Calling all stage iv sisters [Archive] - HER2 Support Group Forums

Jackie07

06-15-2011, 04:54 PM

Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.

And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us.

Trish ----------- Dec. 2006 ------------ 4yrs 6 months and counting
Pam P. -------- Sept. 2002 ------------8 yrs 9 months and counting
Colleen007 --- Oct. 2005 -------------5 yrs 8 months and counting
Missyw -------- Aug. 2006 ------------4 yrs 10 months and counting
Joan M -------- Jan. 2007 -------------4 yrs 5 months and counting
Kathy T ------- [Jan. 2003] ------------8 yrs 5 months and counting
Nancy L ------- Feb. 2009 ------------ 2 yrs 4 months and counting
Chelee --------- Dec. 2005 ------------ 5 yrs 6 months and counting
Lori R ---------- Oct. 2007 -------------3 yrs 6 months and counting
Deena H ------- Jan. 2011 --------------------5 months and counting
Barbara H ----- May 2004 ------------7 yrs 1 month and counting
Chrisy ---------- Sept. 2004 -----------6 yrs 9 months and counting
Sheila ---------- Sept. 2003 ------------7 yrs 9 months and counting
Nsebesta ------ May 2004 ------------ 7 yrs 1 month and counting
Mamacze -------------2004 -------------7 years and counting
Ceesun ----------- over 4 years ------- 4 years and counting
Hutchibk ------ Aug. 2005 ------------- 5 yrs 10 months and counting
Emilieb --------- Jan. 2010 ------------- 1 yr 5 months and counting
DEBBIE S ------- Oct. 2004 ------------- 6 yrs 8 months and counting
Krisvell --------- Nov. 2010 -------------------- 8 months and counting
SuThorn --------Sept. 2007 ------------ 3 yrs 9 months and counting
CourtneyL ----- April 2008 ------------ 3 yrs 2 months and counting
Hema ------------ March 2011 -----------------3 months and counting
Schoolteacher - Dec. 2007 ------------3 yrs 6 months and counting
SoCalGal --------- March 2007 ---------4 yrs 3 months and counting
MaryL ------------ July 2004 -------------6 yrs 11 months and counting
PatE -------------- Oct. 2007 -------------3 yrs 8 months and counting
KDR --------------- June 2010 ------------1 yr and counting
Flossie ------------ July 2008 -------------2 yrs 11 months and counting
Marilyn ---------- Jan. 2001 ------------10 yrs 5 months and counting
Kim in CA -------- Sept. 2001 -----------9 yrs 9 months and counting
Adriana Mangus July 2003 ------------7 yrs 11 months and counting
Kim in DC --------- Feb. 2008 ----------- 3 yrs 4 months and counting
Fauxgypsy -------- Feb. 2007 ----------- 4 yrs 4 months and counting
DianaMK ---------- June 2010 -----------1 yr and counting
[SoCalGal counted so far 33 members living 145 total] I counted 35 members living 168 years and 9 months]
Tonya -------------- Aug. 2006 -----------4 yrs 10 months and counting
Asahizuru ---------------- 2002 ---------- 9 yrs and counting
Vivienne [Mom of] March 2011 -------------- 3 months and counting
Radiant ------------------- 2010 -----------1 yr 6 months and counting
Ahoff -----------------------2010 -----------1 yr 6 months and counting
Sherryg683 -------- Dec. 2005 ---------- 5 yrs 6 months and counting
Kavy ----------------- Nov. 2005 ----------5 yrs 7 months and counting
DQ1 ------------------------- 2011 -
Unregistered --------Jan. 2007 --------- 4 yrs 5 months and counting
[DMWARN] [wife] ------ 2000 --------- 11 yrs and counting
Linda b --------------- Jan. 2007 -----------4 yrs 5 months and counting
Angela R ------------------- 2011 ------------------2 months and counting

Total: 48 members living 220 years and three months as of June 15, 2011
[Please add/correct if you notice any errors.]

hraby73

06-16-2011, 09:28 AM

Thanks, Jackie07, for directing me to this thread. Very encouraging to see so many people living with stage iv. I was initially diagnosed on 4/1/11 with stage iv, and I went through a few weeks thinking I had an immediate death sentence. With a 7 year old daughter, that is not what I wanted!
I just had my first set of scans since starting treatment and have had a wonderful response to weekly Taxol and Herceptin. I hope to continue that path and be one of the lucky ones who lives with stage iv for a long time. I am currently reading "Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer" and it is also giving me a lot of hope!
Thanks, ladies, for sharing your stories of strength!

Kmswilson

06-17-2011, 06:51 AM

I found this board and post shortly after I was diagnosed as stage IV in early January 2011. When I received the diagnosis in January, it originally felt like they were telling me there was very little hope and to say my goodbyes. I was devastated for my 4-year-old and 2-year-old. I clung to the fact that my surgeon told me that remission was possible, and however long remission lasted was between me and God. After reading all of the stories on here, I realized it was more than possible, it was going to happen! Every time I read a post from someone else who is stage IV and has beaten the odds, or is around after a long fight, it adds to my resolve to beat this crap into remission until a cure can be found! After my third set of scans, they discovered new liver lesions, and I was scared, wondering if this was the beginning of losing control over this beast. But then I read stories of the many ups and downs throughout these journeys, and it again gives me the boost I need to face it head-on. Thank you all so very, very much for sharing your stories. This is all so scary, but not nearly as much so with so many people to turn to who have gone through the same or a similar experience. I am humbled by all of your courage!

Mtngrl

06-17-2011, 06:57 AM

Hello, Stage IV sisters. I'm one of the newbies. I was Stage IV at diagnosis, on May 24, 2011. I have IDC in my left breast and have confirmed mets to the liver and possible mets to lungs. I have had three treatments of Taxol and Herceptin, with not too many side effects and no follow-up scanning as yet. I don't have any tumor markers.

Mtngrl

06-17-2011, 07:00 AM

Thank you for taking the time to do this tally. It is wonderful to have this information, and it's very encouraging.

Ceesun

06-17-2011, 12:54 PM

Jackie, That count up you did is remarkable--what a kind gal you are...encourages so many. Ceesun

Vicky

06-17-2011, 07:03 PM

Hi everyone, I am a newbie here, although I've been reading for awhile. I was dx stage IV 1 hour before I was due for infusion for what we thought was stage III IDC in my right breast. I felt really fortunate to get on a trial for TDM1 and after 3 treatments my liver mets completely disappeared and there was shrinkage in the mets to my spine (18mm-13mm) and a smaller shrinking in the mass in my right breast from 4.4 cm to 4.2 cm. My onc. seemed pleased with the results and we will stay the course for now with TDM1.

I am also greatly inspired and encouraged to see so many stage IV survivors, thriving and living a good life! Thanks to all the veterans showing up to support and encourage all of us newbies, it truly makes a difference!

Vicky

tammymarie1971

06-17-2011, 09:06 PM

Hi Ladies, I haven't been here in ages!! I also wanted to weigh in here...I was dx'd in Dec.'01 and have been stage 4 since Mar'04 with met to liver and then may'05 with bone mets...I have recently (christmas time) found out that there is once again mets to the liver...I had to go off of H in September'10 because of heart issues, scans showed only bone involvement at this point...however I started having issues and my ca15-3 gradually climbed from 88 to 295, scans showed liver tumor, back on H quick!! tumor markers down to 177 with 1st treatment back. However last week tumor markers back up to 255 now and I just feel yuckier...appetite issues, off and on nausea, excessive heart burn, and just generally don't feel sick enough to stay in bed, but not well enough to do much!! Sound familiar to anyone...
Heart is becoming issue again, but I am afraid to stop again because "the big wigs in charge?" have told my onc that I will lose H permanently if I stop again....Hmmmmm dropping dead suddenly because of heart issues is an easier death than the one I have imagined...LOL... I firmly believe that I will go NO WHERE until my Creator says it's time!!! There is freedom in that!!!!
Anyway, cardiologist will try upping my meds first, and then we'll see.

I am going to do the fish oils though and Omega 3..thanks to the wisdom of you ladies!!
I am now waiting for approval and paper work crap to go through so I can add tykerb to my regime...

Next week I get to see my son get his high school diploma!!! He was 8 when I was dx'd..I got to turn 40 last month and my hubby and I have our 20th anniversary next month!!
God has been faithful and merciful to my family and we will be grateful no matter how things "play out".

Thanks for letting me go on and on (not that you had much choice!! LOL)
I hope this post came across as encouraging to newbies as I meant it!!!
Life has been good to me!! Hey there is a song in there somewhere!!!

Love to you all....

StephN

06-17-2011, 09:37 PM

Hey Tammymarie -
Yes, long time, no see. But sorry to hear you have the stubborn liver met. Outweighing that is all the GREAT news about your family milestones. And I am sure there are more to come.

I have somehow missed adding my two cents and 9 years + worth of stage IV to this thread. But here I am to add one more hopeful story to this group.

We have more than one thread on these boards listing survival stories. Great to have so many add theirs!

Jackie07

06-17-2011, 10:08 PM

Stage IV Diagnosis
Trish – Dec. 2006 4 yr 6 month
Pam P. – Sept. 2002 8 yr 9 month
Colleen007 – Oct. 2005 5 yr 8 month
Missyw – Aug. 2006 4 yr 10 month
Joan M – Jan. 2007 4 yr 5 month
Kathy T – [Jan. 2003] 8 yr 5 month
Nancy L – Feb. 2009 2 yr 4 month
Chelee – Dec. 2005 5 yr 6 month
Lori R – Oct. 2007 3 yr 6 month
Deena H – Jan. 2011 5 month
Barbara H – May 2004 7 yr 1 month
Chrisy – Sept. 2004 6 yr 9 month
Sheila – Sept. 2003 7 yr 9 month
Nsebesta – May 2004 7 yr 1 month
Mamacze – 2004 7 years
Ceesun – over 4 years 4 years
Hutchibk – Aug. 2005 5 yr 10 month
Emilieb – Jan. 2010 1 yr 5 month
DEBBIE S – Oct. 2004 6 yr 8 month
Krisvell – Nov. 2010 8 month
SuThorn – Sept. 2007 3 yr 9 month
CourtneyL – April 2008 3 yr 2 month
Hema – March 2011 3 month
Schoolteacher – Dec. 2007 3 yr 6 month
SoCalGal – March 2007 4 yr 3 month
MaryL – July 2004 6 yr 11 month
PatE – Oct. 2007 3 yr 8 month
KDR – June 2010 1 yr
Flossie – July 2008 2 yr 11 month
Marilyn – Jan. 2001 10 yr 5 month
Kim in CA – Sept. 2001 9 yr 9 month
Adriana Mangus – July 2003 7 yr 11 month
Kim in DC – Feb. 2008 3 yr 4 month
Fauxgypsy – Feb. 2007 4 yr 4 month
DianaMK – June 2010 1 yr
[SoCalGal counted so far 33 members living 145 total] I counted 168 year
Tonya – Aug. 2006 4 yr 10 month
Asahizuru – 2002 9 yr
Vivienne [Mom of] – March 2011 3 month
Radiant – 2010 1 yr 6 month
Ahoff – 2010 18 month
Sherryg683 – Dec. 2005 5 yr 6 month
Kavy – Nov. 2005 5 yr 7 month
DQ1 – 2011
Unregistered – Jan. 2007 4 yr 5 month
[DMWARN] [wife] – 2000 11 yr
Linda b – Jan. 2007 4 yr 5 month
Angela R – 2011 2 month
Hraby73 – April 2011 2 month
Kmswilson – Jan 2011 5 month
Mtngrl – May 2011 1 month
Vicky – March 2011 3 month
tammymarie1971 – Dec 2001, March 2004 7 yr 3 month
Total 54 members and 228 year 5 months as of June 18, 2011 (according to the postings on this thread.)

tammymarie1971

06-17-2011, 10:34 PM

Thanks for adding me Jackie..Don't forget Steph!!!

Jackie07

06-17-2011, 11:54 PM

[Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.

And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong; and the increasingly 'painful' mammagram I'd been experiencing for four years wasn't because 'some women' have painful mammagrams...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

(Initial Diagnosis) Stage IV Diagnosis _______Triumph years since Stage IV

Trish – (May 2004) Dec. 2006______________4 yr 6 month and counting
Pam P. – (June 2001) Sept. 2002____________8 yr 9 month and counting
Colleen007 – Oct. 2005 ___________________ 5 yr 8 month and counting
Missyw – (Jan 2001) Aug. 2006 _____________4 yr 10 month and counting
Joan M – (Sept 2003) Jan. 2007 ____________ 4 yr 5 month and counting
Kathy T – [Jan. 2003] _____________________ 8 yr 5 month and counting
Nancy L – Feb. 2009 ______________________ 2 yr 4 month and counting
Chelee – Dec. 2005 _______________________ 5 yr 6 month and counting
Lori R – Oct. 2007 ________________________ 3 yr 6 month and counting
Deena H – Jan. 2011 ______________________ 5 month and counting
Barbara H – May 2004 ____________________ 7 yr 1 month and counting
Chrisy – Sept. 2004 _______________________ 6 yr 9 month and counting
Sheila – Sept. 2003 _______________________ 7 yr 9 month and counting
Nsebesta – May 2004 _____________________ 7 yr 1 month and counting
Mamacze – 2004 _________________________ 7 yr and counting
Ceesun – over 4 years _____________________ 4 yr and counting
Hutchibk – Aug. 2005 _____________________ 5 yr 10 month and counting
Emilieb – Jan. 2010 _______________________ 1 yr 5 month and counting
DEBBIE S – Oct. 2004 ______________________6 yr 8 month and counting
Krisvell – Nov. 2010 _______________________8 month and counting
SuThorn – Sept. 2007 _____________________ 3 yr 9 month and counting
CourtneyL – April 2008 ____________________ 3 yr 2 month and counting
Hema – March 2011 ______________________ 3 month and counting
Schoolteacher – Dec. 2007 _________________3 yr 6 month and counting
SoCalGal – March 2007 ____________________4 yr 3 month and counting
MaryL – July 2004 ________________________ 6 yr 11 month and counting
PatE – Oct. 2007 __________________________3 yr 8 month and counting
KDR – June 2010 __________________________1 yr and counting
Flossie – July 2008 ________________________ 2 yr 11 month and counting
Marilyn – Jan. 2001 _______________________10 yr 5 month and counting
Kim in CA – Sept. 2001 ____________________ 9 yr 9 month and counting
Adriana Mangus – July 2003_________________7 yr 11 month and counting
Kim in DC – Feb. 2008 _____________________ 3 yr 4 month and counting
Fauxgypsy – Feb. 2007 _____________________4 yr 4 month and counting
DianaMK – June 2010 _____________________ 1 yr and counting
Tonya – Aug. 2006_________________________4 yr 10 month and counting
Asahizuru – 2002 _________________________ 9 yr and counting
Vivienne [Mom of] – March 2011____________ 3 month and counting
Radiant – 2010 ___________________________1 yr 6 month and counting
Ahoff – 2010 _____________________________1 yr 6 month and counting
Sherryg683 – Dec. 2005 ____________________5 yr 6 month and counting
Kavy – Nov. 2005 _________________________5 yr 7 month and counting
DQ1 – 2011 ______________________________ and counting
Unregistered – Jan. 2007___________________ 4 yr 5 month and counting
[DMWARN] [wife] – 2000 __________________ 11 yr and counting
Linda b – Jan. 2007 _______________________ 4 yr 5 month and counting
Angela R – (2009) April 2011________________2 month and counting
Hraby73 – April 2011______________________ 2 month and counting
Kmswilson – (Dec 2010) Jan 2011_____________5 month and counting
Mtngrl – (April 2011) May 2011______________1 month and counting
Vicky – March 2011________________________3 month and counting
tammymarie1971 – (Dec 2001) March 2004____7 yr 3 month and counting
StephN – (Sept 2000) Jan. 2002_______________8 yr 5 month and counting

Total: 53 members (who have posted on this thread) and 236 year 10 months as of June 18, 2011

Trish

06-18-2011, 12:28 AM

Jackie, this calculation will keep you busy but your work is very much appreciated. I certainly hope to keep adding to the burden of calculation! Tammy's ups and downs are very familiar to me (except my tumour marker numbers tend to get into the 4 figures not the 3 figures!) I've enjoyed many family milestones in my Stage IV time and had lots of great experiences. My QOL is as good as, if not better than, many of my friends' and, like Tammy, I plan to continue as long as I can but I will take what comes with grace the help of medical science. Well that is the theory anyway. Newbies, you have a much better chance of being in Steph N's shoes than we did because more options are available sooner.But even if that level of stable disease eludes you, you can still look forward to lots of time as parents, friends, family members, workers -whatever your life offers. And do keep Jackie busy.
Trish

Jackie07

06-18-2011, 03:22 AM

[Introduced this thread to one of our new members. Then I noticed SoCalGal's tally (145 years for all 33 members) Thought I'd double check and add the others following her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (12 years) and AndiBB (13 years), to name a few.

And it suddenly downed on me that I myself have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my family doctor thought I was hypochondriac, he was wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumphs with us. 6-15-2011]

Name________(Initial Dianosis) Stage IV Diagnosis_____Triumph years since Stage IV
__________________________________________________ _________________NED = No Evidence of Disease

Trish____________________(May 2004) Dec. 2006______4 yr 6 month and counting
Pam P______________(June 2001)Sept. 2002___________8 yr 9 month and counting
Colleen007_______________Oct. 2005________________5 yr 8 month and counting
Missyw_____________(Jan. 2001)Aug. 2006___________4 yr 10 month and counting
Joan M__________________(Sept.2003)Jan. 2007_______4 yr 5 month and counting
Kathy T__________________Jan. 2003________________8 yr 5 month and counting
Nancy L__________________Feb. 2009________________2 yr 4 month and counting
Chelee___________________(Dec. 2005) Sept2009______5 yr 6 month and counting
Lori R____________________Oct. 2007________________3 yr 6 month and counting
Deena H_________________(March 2010) Oct. 2010_____9 month and counting
Barbara H________________May 2004 ________________7 yr 1 month and counting
Chrisy______________(June2001)Sept. 2004 ____________6 yr 9 month and counting
Sheila___________________(Feb. 2002)Sept. 2003 ______7 yr 9 month and counting
Nsebesta_________________May 2004 ________________7 yr 1 month and counting
Mamacze ________________(2001)2004________________7 yr and counting
Ceesun___________________over 4 years______________4 yr and counting
Hutchibk_________________(Nov2003)Aug. 2005 _______5 yr 10 month and counting
Emilieb___________________Jan. 2010 ________________1 yr 5 month and counting (14m NED)
DEBBIE S__________________Oct. 2004 ________________6 yr 8 month and counting
Krisvell___________________(June 2009)Nov. 2010 ______8 month and counting
SuThorn__________________Sept. 2007 _______________3 yr 9 month and counting
CourtneyL ________________April 2008 _______________3 yr 2 month and counting
Hema____________________(2010)March 2011_________3 month and counting
Schoolteacher_____________Dec. 2007________________3 yr 6 month and counting
SoCalGal_______(1996; 2002) March 2007______________4 yr 3 month and counting
Mary L___________________(Oct 2003)July 2004________6 yr 11 month and counting
PatE_____________________Oct 2007_________________3 yr 8 month and counting (NED)
KDR______________________June 2010________________1 yr and counting (4 m NED)
Flossie____________________(Jan 2006)July 2008________2 yr 11 month and counting
Marilyn______________July 2001______________________9 yr 11 month and counting
Kim in CA____________(Feb 1997)Sept 2001_____________9 yr 9 month and counting (6 yr NED)
Adriana Mangus______(June 1994)July 2003_____________7 yr 11 month and counting
Kim in DC____________(Aug 1998)Feb. 2008 _____________3 yr 4 month and counting
Fauxgypsy_________________Feb 2007 _________________4 yr 4 month and counting
DianaMK _________________(Dec 2006) June 2010________1 yr and counting
Tonya____________________Aug 2006__________________4 yr 10 month and counting
Asahizuru_____________(1990, 1996)2002 _______________9 yr and counting
Vivienne [Mom of]__________March 2011_______________3 month and counting
Radiant __________________(2005)2010_________________1 yr 6 month and counting
Ahoff ____________________May 2010__________________1 yr 6 month and counting
Sherryg683________________Dec. 2005__________________5 yr 6 month and counting
Kavy_____________________(April 2005)Nov. 2005________5 yr 7 month and counting
DQ1______________________(May 2009)Feb 2011_________4 month and counting
Unregistered_______________Jan. 2007__________________4 yr 5 month and counting
[DMWARN] [wife]______(1999)2000 _____________________11 yr and counting
Linda b___________________Jan. 2007___________________4 yr 5 month and counting
Angela R__________________(2009)April 2011_____________2 month and counting
Hraby73 __________________April 2011__________________2 month and counting
Kmswilson ________________(Dec 2010) Jan 2011 __________5 month and counting
Mtngrl (Amy)______________(April 2011)May 2011 ________1 month and counting
Vicky_____________________March 2011_________________3 month and counting
tammymarie1971___________(Dec 2001) March 2004_______7 yr 3 month and counting
StephN_______________(Sept 2000) Jan 2002______________8 yr 5 month and counting

Total 53 members (who have posted on this thread) and 236 year 10 months as of June 18, 2011

From NancyL: Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well.

ahoff

06-18-2011, 08:06 AM

Diagnosed stage IV 5-2010 IBC, 5 rounds of chemo, surgery, 3 rounds of chemo, then 36 radiation treatments. Pet scan 3-2011 showed no signs of cancer, but a mamogram last week has sent me for a bioposy on Tuesday. I've been on herceptin since June 2010. Tumor markers have been 17. Any thoughts?

yankeebikachic

06-18-2011, 11:07 AM

Gosh, I haven't been on the forum in a while, I have been very busy with work as usual! I quit my job and opened my own business last fall after a nasty incident involving my past employer and my health privacy rights.
Still here, working about 65 hours a week and going strong!!
I take Tykerb every day (sometimes give myself a day or two off) and no tumor markers. Just scans every 9 months or so.
What a wonderful bunch of ladies we have here!

KDR

06-18-2011, 01:14 PM

Hi, Yankeebikachic,
Did you doctors consider you Stage IV when supr. clav. nodes became involved?
I'm on the same regimen as you (with Herceptin) and noticed that you now take Tykerb only...and Ceesun is also less her chemo. Thanks for sharing?
Congratulations on your good decisions and great health outcome!
Karen

CoolBreeze

06-18-2011, 01:42 PM

Well, I belong in this thread now. I got mets to the liver only five months post herceptin. I had a clean scan the week I finished herceptin and five months later, two lesions.

Neither my doctor nor I know if that means herceptin worked for me or not.

yankeebikachic

06-19-2011, 07:52 AM

Yes Karen, I am Stage 4 with that involvement--anything outside of that immediate area they consider a 4. Plus, I did the H for a year after all the chemo, rads, etc and I lit up on my PET very shortly after I finished H whereas before I was clean. Did the X and Ty. and started getting great results immediately but stayed on that combo for a long while after I even was scanning clean. Been on Ty ever since and doc does not want me off of it, period, even though I would sure like too, lol! But so very thankful for great results so far and glad I found my inner you-know-what to get to where I am today. You should have great results with that combo, I'm glad you are on it!

TriciaK

06-22-2011, 12:26 PM

What a wonderful thread! I hope my post will be helpful also. Most of you probably know my history since I think I may well be the oldest survivor on this site, being age 81 and now fighting my 4th round of BC in 26 years. I was diagnosed in 1985 with in situ stage 1 BC in my right breast. The only treatment was a bilateral mastectomy. The cancer returned in my spine (2 vertebras) in 1990. I assume it should have been considered stage 4 then because it had travelled, but don't know for sure. Again no chemo, just tamoxifen and alternate treatment, including self hypnosis and vegetarian diet. Went for 15 years NED. I stopped seeing an oncologist because I moved away. My last MRI report had read "healed metastatic breast cancer", so I just more or less forget about the cancer! Then I had a heart attack in 2004 and in the testing process a CT scan showed that BC was back, in my right lung, and now her2. I have to be thankful for that heart attack! Six months of Navelbine and Herceptin, then herceptin alone for 11 more months stopped the BC. My ejection fraction dropped to 30 so I had to stop the herceptin. I had a triple bypass in 2006. A year ago the BC showed up again in the right lung, and we have tried 5 kinds of chemo since then. I had some bad side effects to the first 4, and am now on halavan alone. I have become weaker with each chemo but am hoping the halavan will do the trick. I am uneasy about not having herceptin too and am considering seeing another oncologist.
I hope my story will be encouraging, even though I am fighting the Beast for the 4th time. I am thankful for the 26 years I have been fighting and all the blessings received. This last month has been the Month of the Babies: 5 new great-grandchildren born in the last 30 days, 3 boys and 2 girls! I have lived long enough to see my children become grandparents! The total now for my husband and me is 9 children, 32 grandchildren and now 48 great-grands! My prayer is that each one of you may continue to win the fight for as many years as I have! This website has been a blessing I am so grateful for and I am thankful for all I have learned and shared here. My advice to you is to keep being a part of this wonderful caring and informative group, and remember faith and fear cannot coexist. There has never been as much hope as there is now for new treatments, even a cure! Hugs, TriciaK

CoolBreeze

06-22-2011, 01:26 PM

Tricia, I had no idea of your story. I've seen you on the various cancer website but didn't know your age or how long you've been dealing with all of this. You are truly an inspiration - and I sure hope I get to be 81! Only 28 years to go...

KDR

06-22-2011, 04:19 PM

Tricia,
Blue ribbon! You should submit this personal interest story to Reader's Digest!
Karen

Mtngrl

06-22-2011, 05:08 PM

Thank you, Tricia K! What an inspiration.

If I get 26 more years I'll be in my 80's too. I'll take it.

harrie

06-25-2011, 12:48 AM

Tricia....I truely love your story.....

Jean

06-25-2011, 07:17 PM

Tricia,
Thank you - for deomonstrating great courage and faith. My son will be getting married next year and
I think about the future, how my family will grow etc.
When reading about your great grandchildren and great grands it filled me with such joy.

You are so beautiful Tricia....
hugs,
jean

Jeana

06-25-2011, 08:28 PM

Hi ladie's, my name is Jeana, I have been on this site many times but i have never replied. I was diagnosed in June 2010 stage 3a and was doing well until April 2011 and was diagnosed with 4
brain mets. I had surgery to remove the 2 that were in the back and then underwent 4 weeks of wbr. Had scans repeated about 4 weeks ago and were all clean. Ihave been really scared about all this but then i get on here and i feel like i have hope. Thank you all so very much.

Trish

06-26-2011, 12:20 AM

Jeana, lots of people on this site are dealing with (or have dealt with) brain mets. Some have already been around a very long time. I'm sure you will be one of those. Good luck with dealing with the treatment,
Trish

Jackie07

06-26-2011, 01:32 AM

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for 33 members) back in March. Thought I'd double check and add the ones after her posting, and I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures: the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

Name___________(Initial Dianosis) Stage IV Diagnosis_______________Triumph years since Stage IV NED = No Evidence of Disease

Trish________________(May 2004) Dec. 2006 Liver__________________4 yr 6 month and counting
Pam P___________(IBC June 2001) Sept. 2002 Bone__________________8 yr 9 month and counting
Colleen007____________________Oct. 2005 Liver, spine, femur _______5 yr 8 month and counting
Missyw_____________(Jan. 2001) Aug. 2006 Liver___________________4 yr 10 month and counting
Joan M_____________(Sept.2003) Jan. 2007 Lung____________________4 yr 5 month and counting
Kathy T_________________(1985) Jan. 2003 Bone____________________8 yr 5 month and counting
Nancy L_________________(2004) Feb. 2009_______________________2 yr 4 month and counting NED
Chelee__________ (Dec. 2005 IIIA) Sept2009 Bone___________________5 yr 6 month and counting
Lori R________________________Oct. 2007 Liver___________________3 yr 6 month and counting
Deena H__________(March 2010) Oct. 2010 Lung____________________9 month and counting
Barbara H_______________(1998)May 2004 Brain___________________7 yr 1 month and counting NED
Chrisy______________(June2001)Sept. 2004 Liver____________________6 yr 9 month and counting
Sheila______________(Feb. 2002)Sept. 2003 Neck nodes______________7 yr 9 month and counting
Nsebesta_____________________May 2004 Liver____________________7 yr 1 month and counting NED since 2005
Mamacze ________________(2001)2004 Liver and lungs_______________7 yr and counting NED
Ceesun___________________over 4 years__________________________4 yr and counting
Hutchibk____________(Nov. 2003)Aug. 2005 Chest nodes Bone Brain___5 yr 10 month and counting
Emelie B______________(Nov. 2006)Jan. 2010 Sternum lung liver bone__1 yr 5 month and counting (14m NED)
DEBBIE S______________________Oct. 2004 Liver ____________________6 yr 8 month and counting
Krisvell_____________(June 2009) Jan. 2011 Brain ____________________5 month and counting
SuThorn______________________Sept. 2007 Liver____________________3 yr 9 month and counting NED since 1-2008
CourtneyL ____________________April 2008 Liver Lung (NED) Bone Brain_3 yr 2 month and counting
Hema__________________(2010)March 2011Vert. Liver________________3 month and counting
Schoolteacher_________________Dec. 2007__________________________3 yr 6 month and counting
SoCalGal___________(1996; 2002) March 2007 Lung Sternum 2008 NED in Brain_____4 yr 3 month and counting
Mary L_______________(Oct 2003) July 2004 Skin_____________________6 yr 11 month and counting (NED 3yr 8 m)
PatE__________________________Oct 2007 Liver spine________________3 yr 8 month and counting (NED)
KDR___________________________June 2010 Liver____________________1 yr and counting (4 m NED)
Flossie_________________(Jan 2006) July 2008 Brain Rib neck___________2 yr 11 month and counting
Marilyn___________________(2000) July 2001 Bones__________________9 yr 11 month and counting
Kim in CA______________(Feb 1997)Sept 2001 Liver___________________9 yr 9 month and counting (6 yr NED)
Adriana Mangus________(June 1994)July 2003 Lung___________________7 yr 11 month and counting
Kim in DC______(Aug 1998) 2004IBC Feb. 2008 Skin Sternum____________3 yr 4 month and counting
Fauxgypsy_______________________Feb 2007 Liver___________________4 yr 4 month and counting
DianaMK _____________(Dec 2006) June 2010 Skin Lung_______________1 yr and counting NED
Tonya_________________________Aug 2006 Liver____________________4 yr 10 month and counting
Asahizuru____________(1990, 1996) 2002 Bones______________________9 yr and counting
Vivienne [Mom of]_______________March 2011 Liver_________________3 month and counting
Radiant __________________(2005) 2010 Liver & Soft Tissue Mediastinal nodes____1 yr 6 month and counting
Ahoff __________________IBC May 2010___________________________1 yr 6 month and counting
Sherryg683__________________Dec. 2005 Lungs_____________________5 yr 6 month and counting
Kavy_____________(April 2005)Nov. 2005 Lung Liver__________________5 yr 7 month and counting
DQ1______________(May 2009)Feb 2011 Mediastinal nodes Lung_______4 month and counting
Unregistered________________Jan. 2007____________________________4 yr 5 month and counting
[DMWARN] [wife]______(1999)2000 Spine Lung______________________11 yr and counting
Linda b_____________________Jan. 2007____________________________4 yr 5 month and counting
Angela R______________(2009)April 2011___________________________2 month and counting
Hraby73 ___________________April 2011 Liver Lungs_________________2 month and counting
Kmswilson _________(Dec 2010) Jan 2011 Liver Bones_________________5 month and counting
Mtngrl (Amy)______(April 2011)May 2011 Liver______________________1 month and counting
Vicky_______________________March 2011 Liver Spine_______________3 month and counting
tammymarie1971___(Dec 2001) 2004 liver 2005 Spine/Hip_____________7 yr 3 month and counting
StephN___________(Sept 2000) Jan 2002 Liver_______________________8 yr 5 month and counting
Yankeebikachic_____(April 2006) July 2008 Nodes_____________________2 yr 11 month and counting (NED)
CoolBreeze_________(Aug 2009) May 2011 Liver______________________1 month and counting
TriciaK_____________(1985) 1990 spine, 2004, 2010 lung_______________21 years and counting
Jenan______________(June 2010) April 2011 Brain____________________2 month and counting

Total: 57 members (in the order of their postings on this thread) and 261 years as of June 26, 2011

From NancyL: Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well.

Lauriesh

06-26-2011, 04:50 AM

This post gives me so much hope. I was diagnosed almost a year ago (July 19) I have been NED for 4 months, after doing chemo and RFA for two liver mets.

Hoping for many more years- My husband said he had a dream that we were dancing at our daughter's wedding (she is 9), so that is my goal.

Laurie

Jackie07

06-26-2011, 06:21 AM

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures of the medical staff - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

Name_________(Initial Dianosis) Stage IV Diagnosis_________Triumph years since Stage IV ___NED = No Evidence of Disease

Adriana Mangus_____________(June 1994) July 2003 Lung_________________7 year 11 months and counting
Ahoff ________________________________May 2010 IBC___________________1 year 6 months and counting
Angela R_______________(2009)April 2011________________3 months and counting
Asahizuru________(1990, 1996) 2002 Bones_______________9 years and counting
Barbara H______________(1998)May 2004 Brain___________ 7 yrs 2 months and counting NED
Ceesun (Cathy)______________ 5 years__________________5 yrs and counting (as of 6-27-2011)
Chelee_________(Dec. 2005 IIIA) Sept2009 Bone___________5 yrs 7 months and counting
Chrisy______________(June2001)Sept. 2004 Liver__________6 yrs 10 months and counting
Colleen007_____________________________Oct. 2005 Liver, spine, femur ____5 yrs 9 months and
counting
CoolBreeze_________(Aug 2009) May 2011 Liver____________2 months and counting
CourtneyL ___________________April 2008 Liver Lung (NED) Bone Brain____3 yrs 3 months and counting
DEBBIE S____________________Oct. 2004 Liver ___________6 yrs 9 months and counting
Deena H_________(March 2010) Oct. 2010 Lung____________9 months and counting
DMWARN] [wife of]________________(1999)2000 Spine Lung________________11 yrs and counting
DianaMK ___________(Dec 2006) June 2010 Skin Lung________1 yr 1 month and counting NED
DQ1_______________(May 2009)Feb 2011 Mediastinal nodes Lung___5 months and counting
Emelie B_____________________(Nov. 2006)Jan. 2010 Sternum lung liver bone______1 yr 6 months and counting (14m NED)
Fauxgypsy___________________Feb 2007 Liver______________4 yrs 5 months and counting
Flossie_____________(Jan 2006) July 2008 Brain Rib neck______3 yrs and counting
pibikay (Hema) _________(2010)March 2011Vert. Liver_______4 months and counting
Hraby73 ____________________April 2011 Liver Lungs________3 months and counting
Hutchibk____________________(Nov. 2003)Aug. 2005 Chest nodes Bone Brain_______5 yrs 11 months and counting
Jenan_____________(June 2010 IIIA) April 2011 Brain________3 months and counting
Joan M_______________________(Sept.2003) Jan. 2007 Lung_____________________4 yrs 6 months and counting
Kathy T________________(1985) Jan. 2003 Bone_____________8 yrs 6 months and counting
Kavy_______________(April 2005)Nov. 2005 Lung Liver________5 yrs 8 months and counting
KDR_________________________June 2010 Liver____________1 yr 1 month and counting (4 m NED)
Kim in CA____________(Feb 1997)Sept 2001 Liver_____________9 yrs 10 months and counting (6 yr NED)
Kim in DC____(Aug 1998) 2004IBC Feb. 2008 Skin Sternum______3 yrs 5 months and counting
Kmswilson __________(Dec 2010) Jan 2011 Liver Bones________6 months and counting
Krisvell________________________(June 2009) Jan. 2011 Brain _________________6 months and counting
Lauriesh (Laurie)________________(July 2010) 2 Liver mets(RFA)________________1 year and counting (4 months NED)
Linda b_______________________Jan. 2007_________________4 yrs 6 months and counting
Lori R________________________Oct. 2007 Liver_____________3 yrs 7 months and counting
Mamacze _________________(2001)2004 Liver and lungs_______7 yrs and counting NED
Marilyn___________________(2000) July 2001 Bones__________10 yrs and counting
Mary L________________(Oct 2003) July 2004 Skin____________7 yrs and counting (NED 3yr 9 m)
Missyw________________(Jan. 2001) Aug. 2006 Liver__________4 yrs 11 months and counting
Mtngrl (Amy)___________(April 2011)May 2011 Liver___________2 months and counting
Nancy L___________________(2004) Feb. 2009_______________2 yrs 5 months and counting NED
Nsebesta_______________________May 2004 Liver____________7 yrs 2 months and counting NED since 2005
Pam P________________________(IBC June 2001) Sept. 2002 Bone___________________8 yrs 10 months and counting
PatE___________________________Oct 2007 Liver spine________3 yrs 9 months and counting (NED)
Radiant __________________(2005) 2010 Liver & Soft Tissue Mediastinal nodes___1 yr 7 months and counting
Schoolteacher (Amelia)____________Nov 28. 2007_____________3 yrs 7 months and counting (NED since 4-16-2008)
Sheila______________(Feb. 2002)Sept. 2003 Neck nodes___________________________7 yrs 10 months and counting
Sherryg683__________________Dec. 2005 Lungs______________5 yrs 7 months and counting
SoCalGal___________(1996; 2002) March 2007 Lung Sternum 2008 NED in Brain_____4 yrs 4 months and counting
StephN___________(Sept 2000) Jan 2002 Liver________________8 yrs 6 months and counting
SuThorn______________________Sept. 2007 Liver_____________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971___(Dec 2001) 2004 liver 2005 Spine/Hip_______7 yrs 4 months and counting
Tonya__________________________________Aug 2006 Liver_______________________4 yrs 11 months and counting
TriciaK_____________(1985) 1990 spine, 2004, 2010 lung_______21 years and counting
Trish__________________________(May 2004) Dec. 2006 Liver______________________4 yrs 7 months and counting
Unregistered_________________Jan. 2007___________________4 yrs 6 months and counting
Vicky_______________________March 2011 Liver Spine_________4 months and counting
Vivienne [Mom of]____________March 2011 Liver______________4 months and counting
Yankeebikachic_____(April 2006) July 2008 Nodes______________3 yrs and counting (NED)

Total 60 members* and 284* years as of July 9, 2011

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

*Including Christine and AndiBB and those who have posted on this thread.

pibikay

06-27-2011, 03:10 AM

wow it is heartening

Ceesun

06-27-2011, 08:49 AM

Jackie you are amazing with your tally just checkin in with Ceesun now at a full five years! Cathy

Jackie07

07-10-2011, 12:01 AM

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. [60 members* and 284* years as of July 9, 2011.]

I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

Name (Age at I.D.) ____Er Pr Her2 (Initial Diagn) Stage IV Diagnosis_________Clinical. Trials______Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus______ Er- Pr- Her2+ (June 1994) July 2003 Lung _____________________________ 7 year 11 months and counting
Ahoff (Ann) _____________________________May 2010 IBC ______________________________ 1 year 6 months and counting
Angela R __________________________ (2009) April 2011 _________________________________3 months and counting
Asahizuru _____________________ (1990, 1996) ....... 2002 Bones Spine ________________________ 9 years and counting
Barbara H _____________________ (May 1998) May 2004 Brain _____________________________ 7 yrs 2 months and counting (NED)
Ceesun (Cathy) __________________________ June 2006 Lung _____________________________5 yrs and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _____________________________ 5 yrs 7 months and counting
Chrisy______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1_______________ 6 yrs 10 months and counting
Colleen007____________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ___________________ 5 yrs 9 months and counting
CoolBreeze_____________________ (Aug 2009) May 2011 Liver _____________________________ 2 months and counting
CourtneyL ___________________ Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ___________ 3 yrs 3 months and counting
DEBBIE S_____________________ Er- Pr- Her2+ Oct. 2004 Liver _____________________________ 6 yrs 9 months and counting
Deena H___________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ______________________________ 9 months and counting
DMWARN [wife of]_________________ (1999) ......... 2000 Spine Lung _________________________11 1/2 yrs and counting
DianaMK _____________________ (Dec 2006) June 2010 Skin Lung ___________________________1 yr 1 month and counting (NED March 2011)
DQ1__________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung _______________ 5 months and counting
Emelie B__________________ Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _______________ 1 yr 6 months and counting (NED)
Fauxgypsy __________________ Er+ Pr+ Her2+ Feb 2007 Liver______________________________ 4 yrs 5 months and counting
Flossie ________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______________________ 3 yrs and counting
Hraby73 (Holly) _____________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________________________ 3 months and counting
Hutchibk (Brenda) ___ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1 ______ 5 yrs 11 months and counting
Jenan ____________________ (June 2010 IIIA) April 2011 Brain (WBR) ________________________ 3 months and counting (all clean)
Joan M ____________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain__________________________ 4 yrs 6 months and counting
Kathy T__________________ Er+ Her2+ (1984) Jan. 2003 Bone _________T-DM1 (2 yrs) _________ 8 yrs 6 months and counting
Kavy _______________________ (April 2005) Nov. 2005 Lung Liver _________________________ 5 yrs 8 months and counting
KDR (Karen) _______________ Er- Pr+ Her2 + June 2010 Liver_______________________________ 1 yr 1 month and counting
Kim in CA ____________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ________ UW [Seattle]vaccine ______ 9 yrs 10 months and counting (6 yr NED)
Kim in DC ___ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs) _______ 3 yrs 5 months and counting
Kmswilson __________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 6 months and counting
Krisvell ___________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 6 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA)_________________1 year and counting (4 months NED)
Linda b ___________________________ Er+ Her2+ Jan. 2007 Lower back & Neck ________________4 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________3 yrs 7 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine ________7 yrs and counting (NED)
Marilyn_______________________________(2000) July 2001 Bones____________________________10 yrs and counting
Mary L____________________________(Oct 2003) July 2004 Skin______________________________7 yrs and counting (NED since Oct 2007)
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver ______________________________4 yrs 11 months and counting
Mtngrl (Amy) (56) _____________ Er+ (April 2011) May 2011 Liver _____________________________2 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 5 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 2 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)______________ 8 yrs 10 months and counting
PatE _______________________________________Oct 2007 Liver spine ________________________3 yrs 9 months and counting (NED)
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011Vertebrae, Liver _________________ 4 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4_____________________________________3 yrs 7 months and counting (NED since 4-16-2008)
Sheila (49.99) ___________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes_______T-DM1(3)________7 yrs 10 months and counting
Sherryg683__________________________________Dec 2005 Lungs ____________________________ 5 yrs 7 months and counting
SoCalGal_____________(1996; 2002) March 2007 Lung Sternum 2008 NED in Brain_______________4 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver (NED) 2005 Brain (NED)_______8 yrs 6 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver__________________________ __________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ____________________________7 yrs 4 months and counting
Tonya ___________________________ Aug 2006 Liver_______________________________________ 4 yrs 11 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone ______________ 4 yrs 7 months and counting
Unregistered _____________________ Jan. 2007 ____________________________________________ 4 yrs 6 months and counting
Vicky____________________________March 2011 Liver Spine________________________________ 4 months and counting
Vivienne [Mom of]_________________March 2011 Liver______________________________________ 4 months and counting
Yankeebikachic (34)________(April 2006 IIIC) July 2008 Nodes in sup. clav.______________________ 3 yrs and counting (NED)

Total 60 members* and 284* years as of July 14, 2011

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

*Including Christine and AndiBB and those who have posted on this thread.

Jean

07-10-2011, 08:28 AM

Jackie you are amazing!!!!!! Just amazing...220
Very impressive.
It is extremely moving to read all the different stories from our sisters. The strength, courage and fighting spirit and beating the odds. God Bless Each One each day.

Jean

Catherine

07-10-2011, 07:18 PM

Great thread...great positive ladies! And it seems there are a lot of very good doctors and nurses out there helping everyone. Congratulations! I feel so lucky to be part of this site.

Jackie07

08-05-2011, 01:47 AM

Name ____________Er Pr Her2 (Initial Diagn) Stage IV Diagnosis_________Clinical. Trials______Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 7 year 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 6 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________3 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 2 months and counting (NED)
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 5 yrs 7 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 6 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 9 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 2 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 3 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 ½ years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 2 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 5 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 6 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 5 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _1 yr 11 months and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 5 yrs 11 months and counting
Jenan _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 3 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________6 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 6 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 4 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 6 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 8 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 1 month and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 9 yrs 10 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 5 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 6 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 2 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 6 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year and counting (4 months NED)
Linda b ___________________________ Er+ Her2+ Jan. 2007 Lower back & Neck ________________4 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 7 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 8 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 4 yrs 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________2 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 5 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 2 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 8 yrs 10 months and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 10 months and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011Vertebrae, Liver ____________________ 4 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 7 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________7 yrs 10 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 7 months and counting
SoCalGal _____________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain ________________4 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 6 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 4 months and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 4 yrs 11 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 7 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 6 months and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 4 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 4 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 2 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs and counting (NED)

Total 71 members* and 309* years 5 months as of August 8, 2011
@ - members gleaned from other threads

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

Joan S.

08-07-2011, 08:46 AM

Diagnosed April 2007 initially with Stage 4. It's been a battle but I have seen my daughter get married and have my first Grandchild! I am living a very full and happy life!

dawn

08-11-2011, 04:54 AM

Diagnosed February 2009 with stage 4. Doing well so far and quality of life is still great. original dx was march 2006.

Dawn

Jackie07

08-11-2011, 05:28 PM

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 7 year 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 6 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________3 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 2 months and counting (NED)
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 5 yrs 7 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 6 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 9 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 2 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 3 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 6 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 ½ years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 2 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 5 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 6 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 5 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _1 yr 11 months and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 5 yrs 11 months and counting
Jenan _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 3 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________6 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 6 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 4 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 6 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 8 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 1 month and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 9 yrs 10 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 5 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 6 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 2 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 6 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year and counting (4 months NED)
Linda b ___________________________ Er+ Her2+ Jan. 2007 Lower back & Neck ________________4 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 7 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 8 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 4 yrs 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________2 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 5 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 2 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 8 yrs 10 months and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 10 months and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011Vertebrae, Liver ____________________ 4 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 7 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________7 yrs 10 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 7 months and counting
SoCalGal _____________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain ________________4 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 6 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 4 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 4 yrs 11 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 7 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 6 months and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 4 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 4 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 2 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs and counting (NED)

Total 73 members* and 316* years 1 months as of August 11, 2011
@ - members gleaned from other threads

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

kiwigirl

08-11-2011, 05:53 PM

Wow what a list. I'm another stage iv. It's really interesting when you put it like this. Thanks for all your hard work.

Thanks Jacqui

Unregistered

08-24-2011, 10:44 PM

just wanted to say i am 9 years stage4 and ned. herceptin is a wonder drug. " where there is life there is hope"

KG1993

09-09-2011, 08:21 PM

what does NED stand for?
After your original chemo treatment....what happens? Many of you have posted you have been on herceptain for years. Do you continue to take chemo drugs? Curious. My Mom was just diagnosed 2 weeks ago with Stage 4 her2+. Bone mets and 2 spots on liver. She had her first treatment yesterday. 2 chemo drugs IV + herceptain.

Trish

09-09-2011, 10:15 PM

KG, NED is the Holy Grail as it stands for No Evidence of Disease-what we all aspire to. Unfortunately I and many others still have to take chemo drugs but some lucky folk are stable on Herceptin, Tykerb or a combination, some on anti hormonals and some blessed folk like Steph N and AndiBB are on no cancer drugs. Or to quote Steph N they are on a wing and a prayer.
May NED be your future,
Trish

Mtngrl

09-11-2011, 11:30 AM

@KG1993--I just want you to know that what it says on this site about liver metastasis may be out of date, or it may only apply to massive metastasis that has progressed to the point of liver failure. I have a few small lesions on my liver. They are now much smaller than when they were found in April. So don't let what this board says about it freak you out.

Jackie07

09-11-2011, 12:56 PM

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 2 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 4 months and counting
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 4 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 3 yrs 11 months and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 3 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 4 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 7 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 11 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 3 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 7 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 8 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 7 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 2 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 1 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 1 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________7 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 5 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________7 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 8 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 5 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 8 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 10 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 3 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 weeks
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 7 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________7 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 4 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 8 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ (Feb 2008) Aug 2011 Lung _______________________ 3 weeks and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 2 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 11 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 2 months and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs 2 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 9 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 1 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 4 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 7 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 4 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 ½ yrs (NED)
Phil (‘s wife) ___________________________________________2006 _____________________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 6 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 9 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 9 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 6 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 8 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 6 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 9 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 8 months and countin
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 6 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 6 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 3 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 2 months and counting (NED)

Total 84 members* and 361 * years 4 months as of Oct 1, 2011
@ - members gleaned from other threads

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

Mandamoo

09-17-2011, 05:43 PM

I'll add myself to the list here - Stage 4 since June 2011 - mets to lungs, skin and axilla node.
This thread gives me hope on days like today when I am battling a temp (struggle with my neutrophil counts on this treatment) to know that it will be worth it. I feel great most of the time. I spent all day yesterday gardening and most of the time still feel pretty good apart from fatigue from the treatment and the odd issue with treatment side effects.
The wonderful sisters on here inspire me daily.

linda b

09-17-2011, 05:54 PM

Stage 4 since Feb 2007 - almost 5 years!

annmask

09-17-2011, 07:10 PM

Stage 4 since Jan 08, only on second chemo, expect to see my 9 and 15 year old daughters into adlthood!

Jeana

09-19-2011, 03:59 AM

Thank you all for your reply's, i had a bad day saturday wondering if this chemo will work or not.. I got baptized at church yesterday along with my twin sister and i just have to believe that i will be ok.. Thank you all again and the best of luck to you all... Jeana

annmask

09-19-2011, 10:00 AM

I am not very adept at this site, but if you search TDM-1 you will find a post of very easy petition to sign attempting to get the FDA to allow access to this fabulous drug for us stage 4 people. I think we all need to sign= it is the best hope out there of NED with minimal side effects! Phil has been amazoing at doing the legwork to get this FDA to wake up and allow access! Than-you Phil!

NEDenise

09-20-2011, 05:56 PM

Thank you all!
Your hope-filled stories were exactly what I needed!!
I had a particularly discouraging series of appointments with my various doctors today. They seemed to think that I should be very encouraged by the statistics they quoted: "your chances of 5 year survival are 50/50" ". That won't even get my boys out of high school! What about seeing them married? I want to be a grandmom!
All the joy was sucked out of me. I felt like I'd been hit by a ton of bricks. All this chemo, surgery, radiation...for a 50% chance at surviving 5 years?! I cried all the way home. My husband was pretty shaken up too.

Then, we got home...I logged in here...and my HER2 sisters gave me hope again!! So many success stories! 3 years, 5, 10 years! So much joy!!

And, Tricia K, when I read about you and your beautiful grand, and great-grandchildren...I cried again, but for a MUCH HAPPIER reason!! You are amazing!! Thank you, Thank you!!

I'll remember you all in prayer!
Stay strong!
Denise

Pray

09-20-2011, 08:16 PM

Hi Lil Sis,

God is good all the timek! Great Attitude! Please know you and your family are in my Prayers also!

Jackie07

10-10-2011, 02:11 PM

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 2 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 4 months and counting
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 4 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 3 yrs 11 months and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 3 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 4 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 7 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 11 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 3 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 7 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 8 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 7 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 2 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 1 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 1 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________7 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 5 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________7 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 8 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 5 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 8 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 10 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 3 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 weeks
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 7 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________7 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 4 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 8 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ (Feb 2008) Aug 2011 Lung _______________________ 3 weeks and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 2 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 11 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 2 months and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs 2 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 9 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 1 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 4 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 7 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 4 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 ½ yrs (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 6 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 9 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 9 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 6 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 8 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 6 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 9 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 8 months and countin
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 6 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 6 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 3 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 2 months and counting (NED)

Total 85 members* and 370 * years 4 months as of Oct 10, 2011
@ - members gleaned from other threads

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

Andrea Barnett Budin

10-11-2011, 08:17 AM

Well, isn't this the most marvelous post!!!! Add my name, please. Jean you rock, as always!

Andi BB '95 Stage 4 invasive lobular carcinoma (L breast -- 9 cm tumor) + 2 lymph nodes out of 21. ER/PR-. Mastectomy and tram flap reconstruction, Adria x 4, CMF 8 mnths. No one was talking HER2 back then.

'98 metastasized throughout liver. HER2+. Herceptin in clinical trials and unavailable. FDA fast-tracked H and it became available September 28, 1998. (I'd been dx in Aug.) 8 mnths Taxotere, Herceptin added in Nov of '98. Took it for 10 Years. Now 3 yrs FREE. Free of H, free of canser. Feeling great!

Take a gegillion supplements (per NY onc who specializes in this -- including necessary dosages -- ev single day AM & PM since '98) -- MOST important during chemo, to boost your immune system and energy level, keep heart strong, fight off free radicals and way more -- despite other 4 oncs who I love but can't help being mainstream conservative and frankly know little about supplements. They worried the supplements would adversely impact the efficacy of the chemo. I listened to my gut and decided to be extraordinarily brave and trust my instincts. I took the supplements. All of them.

'99 officially considered in cautious remission. It was decided by 2 out of 3 independent radiologists that the spots they see in CTs are not tumors but the dead remains of tumors, necrosis. I remain stable to this day. 12 yrs stable and thriving.

You too can be a miracle, defy the odds, trample on the stats and passionately work at remaining full of the Energy that is composed of: Love, Joy, Kindness, Caring, Thoughtfulness, Forgiveness, Humor and much Laughter, Gratitude (for your many blessings) and Awe. Hug every one, and do it for a few seconds longer than you normally would.

Stand clear of all: anger, resentment, blame, remorse, sorrow, FEAR, worries and uncertainty.

SEE yourself vividly far far into the future. Feel it! KNOW IT! OWN IT! Use the power of the energy of your thoughts positively!

Yes, I know this is a really really really tallllll order -- but YOU CAN DO IT. BELIEVE!

If one person has survived your kind of canser, SO CAN *YOU*!

Sending loving, healing energy to all my Sisters... You are radiant Souls, with a mind and body. Connect with your Spirit. Listen to your Inner Voice, not the voice in your head.

Focus all your energy on healing. And take good care of you.

Omega 3 is essential for so many things -- bc, joint pain, arm and leg pain. Read RB's posts on this, please!!

Ellie F

10-11-2011, 10:12 AM

Hi Andy
Really interesting about you taking a supplement for all these years! Some ppl believe that as we live in an eco system we have the cure already but don't know what it is yet! Wonder if some micro-nutrients in your supplement helped to keep you cancer free?
Ellie

Andrea Barnett Budin

10-11-2011, 10:47 AM

YES! I thoroughly believe my multitude of supplements keep me healthy and well. Immune boosters are imperative. Omega 3. C. B-12 for energy. Flaxseed Oil. Co-Enzyme Q10. D-3. E.Green Tea. Resveratrol. Selenium. Zinc.

I am dedicated to staying with my supplements (recommended by one of my oncs who specializes in this, plus meditation, guided imagery, and my firm belief in the mindbody connection!

I KNOW my body hears everything I think and say, everything I whisper, and it responds as I instruct. It seems to have no sense of humor, so I stay clear of, I wish I was dead, You're making me sick, blah, blah.

I troll my brain throughout the day for negativity seeds and consciously choose to reject them. They are poisonous! Whereas loving, compassionate, caring energy draws wellness to you and those around you.

That's my take. And I'm sticking with it!

Jeana

10-11-2011, 04:51 PM

Thank you Jackie for your post...My cancer has spread to my chest wall, and lung... I am back on chemo and have 3 more round's of it and then I will get another scan to see if it is doing any good...I pray that it does. I haven't given up!!! Thank's again, Jeana

Pray

10-11-2011, 10:07 PM

Jeana,

I'm so sorry your cancer has spread! Please know you are in my prayers!

Colleen's sister Nancy

pibikay

10-12-2011, 03:08 AM

Thanks Andi BB. I am dosing Hema with flaxseed added bread.Olive Oil,Canola Oil,Neurobion Forte(a vit B supplement) and graviola.She has calcium for her bones and a multi vitamin without folic acid (aggravates xeloda side efects).She is full of enrgy.All the best

Andrea Barnett Budin

10-12-2011, 06:33 AM

What I've learned since my initial bc dx, and the recurrence -- and what I believe to my core, is that what you want already exists. It blows my mind, but we are each empowered to do more than hope and pray (which are essential as well for sure!).

I saw a troubled young boy on Oprah once who'd been through great emotional upheaval in his young life and had a lot of wonderful therapy. This little boy said (what he'd learned through his trials) DON'T HOPE. DO!

Whatever we focus on all day comes to materialize in our lives. That's both the good news, and the bad. But YOU have the power to harness that.

Granted, it is darn near impossible to wrestle your thoughts, but it can be done. We can consciously choose what we want to be thinking. We have the power to do that! I AM STRONG, BRAVE AND DETERMINED is my mantra. Not that I think I am the first two, but they are precisely what I strive to be. I want to show my daughters how to face adversity, to reach for grace. To be able to find joy and even peace KNOWING what you desire is being magnetized to you by your loving, compassionate, generous, giving, appreciative, forgiving Truest Self. I see myself as a Soul, or a Spirit, with a mind and a body. And that is exactly how I see others...

Brave is not the absence of fear, it is doing what you have to do anyway. I listen to my Inner Voice, which I believe is my divine, God-given Spirit, or Soul. I trust it implicitly. It is the Essence of who I am. It KNOWS and guides me, protects me and loves me more than any one could possibly ever do. It is full of the energy of my sacred Source. It only wants what is best for me.

(Whereas the voice in my head is out for itself and maligns and messes with me, taunting and haunting me.)
I once thought I was the helpless receiver of it's jabs, but now I KNOW I can banish those thoughts. I won't allow them to invade my mind and poison my life.

HEALTHY AND WELL are the words I program into my head each day, instead, as a clear message. The body follows the commands it hears from you. That's its job. I don't want the voice in my head dictating my life. I want to take charge. And whenever I think about that, I realize I am choosing to connect with my Spirit, and let it lead the way. That is the True Me.

Keep making your Intention and Expectation vividly clear, to your body, and to the Universe! Both will respond in kind. Positivity begets positivity. And negativity calls more of the same.

I am sending loving, healing energy to each and every one of you...

Andi

SoCalGal

10-14-2011, 10:56 PM

Gotta love that Andi BB
:-)

Mandamoo

10-15-2011, 02:29 AM

Wow - AndiBB - you are amazing! Thank you so much for your posts this week. A powerful mind and spirit in conjunction with powerful medicine and diet and supplements - now that sounds like a rounded treatment plan to me!
Thank you :-)

kykeon22

10-29-2011, 06:06 AM

thanks jackie for updating the list of stage VI survivors. It's very mood lifting to see so many long positive stories.

There is a misunderstanding about my mother bc though, you wrote that she is stage for since this august, but unfortunately she has been stage for since first diagnosis, that's is since february 2008. Vitamin H and Vitamin T have done a good job in figting the B(east) Cancer.

Thanks again for your huge work.

Kykeon

Mary L

10-29-2011, 09:06 AM

Hi, My name is Mary L and I reached my 8 year cancerversarry Oct 17. I am a survivor of IBC stage IIIb. I was originally given a 28% chance of surviving 2 years and I am still here because of Herceptin and a wonderful onc. I was on Herceptin for over 4 years. I truly believe that you have to really want to survive and think positively during and after your treatment. I am so happy to be alive and watch my grandchildren grow up.

Just recently I was diag. with osteoporis and I will start taking Fosomax on Monday. I was diag. with some compression fractures and have been having back pain but this is just a bump in the road and I will be fine I wish all of you the very best. Mary L

StephN

10-29-2011, 11:19 AM

Mary L -
Was wondering about you recently. Thanks for peeking in and posting that all is well on the cancer front.
Hope your Muga scan will show improved ejection fraction by now.

Have you thought of getting Zometa instead of taking Fosamax every week?

Jackie07

10-29-2011, 07:40 PM

Current stats:

Total 85 members* and 377 * years 1 months as of Oct 29, 2011
@ - members gleaned from other threads

*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. [60 members* and 284* years as of July 9, 2011.]

I also noticed that many other Stage IV sisters are not on the list - the founder of this support group, Christine (NED 10 years) and AndiBB (NED 12 years), to name just a couple.

And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 3 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 5 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ________ 16 years 2 months and counting (NED since 1999)
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 10 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 5 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 4 yrs and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs 2 months and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 1 month and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 6 yrs months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 5 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 6 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 8 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 7 yrs months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1year and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 4 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 8 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 9 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 8 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 3 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 2 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 6 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 2 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________ 8 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 6 months and counting
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________ 8 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 9 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 6 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 9 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 11 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 4 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs 1 month and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 8 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________ 8 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 5 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ____________________________ 3 years 8 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 3 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 9 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 4 yrs months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 3 months and counting
Mary L_______________________(Oct 2003 IBC IIIB) July 2004 Skin___________________________7 yrs 3 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 10 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 2 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 5 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 8 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 5 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs 1 month and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 4 yrs and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year 1 month and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 yr 8 month and counting (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 7 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 8 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 11 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs 1 month and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs10 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 7 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 9 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs 1 month and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 7 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 2 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 10 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 9 months and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 7 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 7 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 4 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 3 months and counting (NED)

fullofbeans

10-30-2011, 04:38 PM

Dx stage 4 in Aug 2006 with 6 tumours (to 3.5cm in teh liver).

It's a rocking boat but I am still afloat.

Wow I have just noticed the compilations above, well done!

dawny

10-30-2011, 10:18 PM

Thank you so much everyone, for this thread, there are some fantastic milestones, it gives us newbies some hope

Dawn

ricky

11-14-2011, 01:37 PM

My wife, first diagnosed stage 4 with liver met 5 and 1/2 years ago, has been disease free for the last 3 plus years. She's getting yet another pet scan as I write. I'd like to hear from other survivors.
Rick

KDR

11-14-2011, 02:59 PM

Rick
That is wonderful news! I am stable, having been diagnosed in July 2010 at Stage 4 with liver mets. What protocols has your wife been on? Wishing your family much continued success.

Jackie07

11-14-2011, 05:04 PM

Below is the information about a research project involving stage IV survivors that was posted in another thread:

http://her2support.org/vbulletin/showthread.php?t=52136&referrerid=2556 (http://her2support.org/vbulletin/showthread.php?t=52136&referrerid=2556)

Jean

11-14-2011, 08:50 PM

Jackie,
You are doll to keep the totals updated.
Thank you.

It certainly does have strong meaning for new members ( older) to see this list.
God Bless All,
Jean

Jackie07

11-22-2011, 04:11 PM

"Happy Thanksgiving!"

Current stats:
Total 87 members* and 383 * years 1 months as of Nov 22, 2011

*Including the founder of this group, Christine ((1990) 1999 Chest, Brain NED 2001~), those who have posted on this thread, and @members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 3 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 5 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ________ 16 years 2 months and counting (NED since 1999)
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 10 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 5 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 4 yrs and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs 2 months and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 1 month and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 6 yrs months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 5 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 6 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 8 months and counting
Dawny _____________________Er- Pr- Her2+ May 27 2011 Lung, nodes chest and neck Abraxane weekly 16 weeks, Herceptin every third week (NED Sept 26 -)
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 7 yrs months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1year and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 4 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 8 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 9 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 8 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 3 months and counting
Fullofbeans _________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 2 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 6 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 2 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________ 8 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 6 months and counting
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________ 8 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 9 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 6 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 9 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 11 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 4 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs 1 month and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 8 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________ 8 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 5 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ____________________________ 3 years 8 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 3 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 9 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 4 yrs months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 3 months and counting
Mary L_______________________(Oct 2003 IBC IIIB) July 2004 Skin___________________________7 yrs 3 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 10 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 2 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 5 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 8 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 5 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs 1 month and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 4 yrs and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year 1 month and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 yr 8 month and counting (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay ('s wife Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ______________ 7 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 8 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ______________________________ 5 1/2 years and counting (3 + years NED)
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 11 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs 1 month and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs10 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 7 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 9 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs 1 month and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 7 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 2 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 10 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 9 months and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 7 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 7 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 4 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 3 months and counting (NED)

CoolBreeze

11-22-2011, 04:23 PM

Thanks Jackie and Happy Thanksgiving to all.

I intend to keep that "and counting" next to my name for a long, long, long time.

hraby73

11-22-2011, 07:29 PM

I am so encouraged by this list! After 8 cycles of 3-weekly Taxol and weekly Herceptin, my CT today showed no measurable tumors! I'll be trading the Taxol for Tamoxifen next week, and can only hope to remain a part of this list for many years to come. Thank you to everyone for sharing their stories- it really does make a difference.

Survivor2be

11-25-2011, 01:41 AM

Jackie, thank you for this list soooo much. It does matter to so many. Please add my info. Original diagnosis: 9/2010 triple negative: chemo, mastectomy, radiation. Breast recurrence 9/2011 HER2+, brain metastasis 10/2011: surgery done. Still in treatment, but cancer-free now 1 week and counting!!!!!!

NEDenise

11-25-2011, 08:50 AM

Survivor2be-
Congratulations on the first of many, many weeks of being cancer-free!! I hope it lasts forever!
Stay strong! Be well!
Denise

PS-You're so right! Jackie is a gem to do this list for us! Thanks Jackie!!

Jackie07

11-25-2011, 08:31 PM

Happy Thanksgiving (again :) !
Current stats:
Total 88 members* and 383 * years 3 months as of Nov 24, 2011

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since Stage IV ___ (NED = No Evidence of Disease)
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 3 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 5 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ________ 16 years 2 months and counting (NED since 1999)
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 10 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 5 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 4 yrs and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs 2 months and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 1 month and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 6 yrs months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 5 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 6 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 8 months and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED)
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 7 yrs months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1year and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 4 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 8 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 9 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 8 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 3 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ________ 5 yrs 2 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 6 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 2 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________ 8 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 6 months and counting
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________ 8 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 9 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 6 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 9 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 11 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 4 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs 1 month and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 8 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________ 8 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 5 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ____________________________ 3 years 8 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 3 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 9 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 4 yrs months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 3 months and counting
Mary L_______________________(Oct 2003 IBC IIIB) July 2004 Skin___________________________7 yrs 3 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 10 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 2 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 5 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 8 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 5 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs 1 month and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 4 yrs and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year 1 month and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 yr 8 month and counting (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 7 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 8 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ______________________________ 5 1/2 years and counting (3 + years NED)
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 11 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs 1 month and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs10 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 7 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 9 months and counting (NED since 2005)
Survivor2be (Andrea) ____________triple – (Sept 2010) 9/2011 Her2+ brain _______________________ 2 months and counting (1 week NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs 1 month and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 7 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 2 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 10 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 9 months and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 7 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 7 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 4 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 3 months and counting (NED)

sandra digilio

12-13-2011, 11:12 AM

All these stories are wonderful to read. I have stage IV metastatic breast cancer and I'm trying to deal with the news. I thought I was fine until I heard the dreaded news in September 2011 that I have it again and in 3 spots in my bones. All your success stories give me hope so thank you all for sharing your thoughts and stories. Peace be with us and lets hope a cure comes around for all of us. God Bless...

KG1993

12-13-2011, 11:58 AM

Agree. Our family has been struck by stage IV as well. I was feeling a little down yesterday about it, and got on here and looked at all the stage IV postings and felt better immediately. Thank you stage IV sisters.
KG

PAFB

12-13-2011, 05:00 PM

In January 2012, I will celebrate 15 years of survival since diagnosis and 14 years since metastasis. After 12 1/2 years, I stopped Herceptin in April 2011. So far, so good.

PAFB

Andrea Barnett Budin

12-13-2011, 05:56 PM

UPDATE on me -- 4th stage lobular breast cancer in July '95. Mastectomy, tram flap reconstruction. 4 Adria 8 CMF. Tamoxifen until -- Aug '98. Bc tumors throughout my liver. Shook me to the core, but I rallied. My Inner Voice told me, Delay is not denial. I worked hard each day, calling my desired goal to me, chasing down all negative thoughts and images and ejecting them from my mind.

Did Taxotere for 8 mnths. The Freight Train drug. Nasty, but highly effective. Began Herceptin (as it just arrived from FDA, fast-tracked out of clinical trials) as well. LUCKY ME. A godsend.

Continued Herceptin from 11/98 - 7/'08. 10 years! I've been off Herceptin for 3 years now. Free. Stable. Tumor markers (CA 27.29) @17 as of today. Graduated to ANNUAL CT scans (chest/abdomen/pelvis). A little scary but I can handle it. Blood work every 6 mnths now. It's a new world out here.

I live grateful for each and every day. Conscious of good fortune. Full of love, compassion, joy and serenity (most of the time).

Lived to see my 2nd dghtr married, and to greet 5 grandchildren since original dx! Yes, I feel so very blessed!

I wish SURVIVAL for you all, my Sisters! Stay strong, brave and determined. Rethink POSSIBLE. Don't just hope -- DO...! We must fully participate in our own wellness -- body, mind and Soul! I believe that with all my heart.

With love,
Andi

choyces

12-13-2011, 06:10 PM

Hey Sisters,
Yesterday I was told I have made a full response to treatment. All the mets in lungs, and all cancer gone. Was diagnosed in July 2011 with 3 large tumors in right breast, lymph in neck etc. Was treated with herceptin, tykerb, and chemo (paclitaxel). I am 50. I now continue with herceptin and head to the Dr. Disis in Seattle for vaccine trial. I am blessed!

sandra digilio

12-14-2011, 08:33 AM

Andrea, your story is inspiring to hear! I just had a bone scan a couple days ago and will know the results this Friday. I'm a little nervous because I'm having pain in my rib where I know there is cancer. I'm trying so very hard to remain hopeful and it's really been a struggle for me. Hearing these stories really helps and for some reason your thread today brightened my day all together so thank you for sharing!
Peace be with you.
Sandra

Mtngrl

12-14-2011, 02:29 PM

I was diagnosed in May 2011 with metastatic bc. PET scan on 12/5 shows no evidence of disease. I will stay on Herceptin at least until it's been a year (late May). One day at a time!

It seems to me (and this is totally unscientific and anecdotal) that maybe with new scanning technology and other diagnostics metastasis is more manageable(?) When I was diagnosed the mets were so small they weren't affecting liver function, which meant I could do chemo. In the old days "advanced cancer" was often very advanced by the time it was diagnosed.

Many of us here were diagnosed with relatively few, small mets. And many have had good responses to chemo and Herceptin. So far, so good, anyway.

Long-term survivors like StephN and AndiBB are certainly inspirational. We can give each other hope and encouragement.

Jackie07

12-15-2011, 01:53 PM

Seasons Greetings!
Current stats:
Total 92members* and 400 * years 5 months as of Dec 15, 2011

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 5 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _______________________________ 1 year 7months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ________ 16 years 4 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___5 years and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 8 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 11 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 7 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 2 months and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver _________________________ 5 yrs 4 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung ______________________________ 5 yrs 6 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 3 months and counting
Choyces ______________________________July 2011 neck node and lung __will do Seattle vaccine trial ___ 5 months and counting (full response to Herceptin, Tykerb and Paclitaxel)
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 3 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 2 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 7 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 8 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 10 months and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial _1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 6 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 7 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 10 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 1 yr 11 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver ____________________________ 4 yrs 10 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 5 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial _____ 5 yrs 4 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 2 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 8 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1__ 6 yrs 4 months and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 10 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 8 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 10 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)_________________ 4 yrs 11 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 8 months and counting
Kaim _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 3 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 8 yrs 11 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 6 yrs 1 month and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver ____________________________ 1 yr 6 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 4 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 3 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)_____ 3 yrs 10 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 10 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 11 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 7 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 11 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 3 years 10 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 5 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck _______________ 4 yrs 11 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 4 yrs 2 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine ______ 7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 6 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 5 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 5 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 4 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver ____________________________ 7 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 ________________________________ 2 yrs 10 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________ 7 yrs 7 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 __ 13 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs 3 months and counting
PatE _______________________________________ Oct 2007 Liver spine ______________________ 4 yrs 2 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 3 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 1 yr 8 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 _________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 9 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 1 yr 10 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ______________________________ 5 1/2 years and counting (3 + years NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 3 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 __________________________________ 4 yrs 1 month and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) ______ 8 yrs 3 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs ________________________ 6 yrs and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain __ 4 yrs 9 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver __________________________ 8 yrs 11 months and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 3 months and counting (4 weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver __________________________________ 4yrs 3 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip __________________________7 yrs 9 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _______________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _____________________________________ 5 years 4 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone ______________ 5 years and counting
Unregistered _____________________ Jan. 2007 ___________________________________________4 yrs 11 months and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________ 9 years and counting
Vicky____________________________March 2011 Liver Spine________________________________ 9 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 9 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 6 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 5 months and counting (NED)

Adriana Mangus

12-17-2011, 06:43 AM

Hi Amy,

I'm also a long term bc survivor --1994 and counting.

Just completed 14 months on the TDM1 trial, looking now to get into a different clinical trial.

I am still here, first on prayers and good friends, 2nd on the excellent care I've received from my oncologist, Doctor Godfrey. God bless him! 3rd and final...life is wonderful, even when things don't seem to go your way, you must continue on keeping your faith, be proactive, educate yourself, participate on clinical trials if you can, after all this is your life, take control of it.

Stay positive.

Love,

Adriana

Jackie07

12-18-2011, 03:51 AM

Saw this very encouraging report of Abraxane by a member of the CancerConnect forum:

"I too have stage 4 ER+ MBC. I was diagnosed in November 2007 (age 49 at the time) with mets in my bones and liver. From January – June 2008 I had 8 treatments of Abraxane (once every 3 weeks). The day after the treatment I had a Neulasta shot to boost my blood count. I lost my hair 14 days after the 1st treatment. The eyebrows and eyelashes went after the 4th treatment. I had bad bone pain and fevers after each treatment that lasted several days. I will say that after those days I felt pretty good. I never had any really bad digestive issues on Abraxane. After the 4th treatment though, I became really tired. I remember there were days where I couldn’t really get off my couch. By the 6th treatment I had lost the feelings in my fingers and my feet. Taxanes will often cause neuropathy in the hands and feet. All of the struggles with chemo were worth it. After chemo I took some time off to recouperate and get my strength back. Then I had breast reconstruction and my ovaries removed. I also started Zometa treatments and Femara pills daily. It took 2 years but by March 2010 I was declared met free. I had 3 tumors (one in each lobe) of my liver that slowly shrank and then disappeared. Since then, I have some bone hot spots in my pelvic and spinal regions, but they come and go. So my point is that I believe Abraxane is worth it. For me, it’s now been 4 years. I think that 6 months of chemo for 4 years of life is a good bargain."

iamlisaann

12-18-2011, 01:39 PM

Hi everyone,
I've recently rediscovered her2support. It's been awhile since I've been on here but know the importance of letting the sisterhood know updates. When I updated my status last I don't believe I even had my first surgery...oh how time flies. Well, after all of this, my most recent scans Dec 1st show NED.

My story:
I'm now 46. First diagnosed at 41 ER/PR neg, Her2+++, fish pos. No history of breast cancer or any cancer for that matter in my family. June 06 found lump in right breast, size of a walnut & felt lump under right armpit. Grew to 4.7cm in a very short time. July 06 diagnosed Stage IV BC also large node (3.3cm) right axilla & small liver METS. Started neoadjuvent chemo 8/06. 4 X Adriam/Cytox., 12 weeks Taxol/Herceptin weekly. Will continue Herceptin for 1 year. Right Breast Lumpectomy and Lymph node dissection 6/07 and 36 rounds of radiation. Complete clinical remission!?!? During Herceptin treatment discovered Brain Mets 4.7cm frontal lobe. Decided it was time to leave my town and head to UCSF (where my breast surgery was performed). Brain
surgery 1/08 and 5 days of Cyberknife to follow. Met with my new UCSF Oncologist 3/08 and started Avastin/Tykerb trial 4/08. Continue Brain MRI and CT Scans Thorax every 3-4 months. Treatment every 2 weeks. To date NED.

I've been reading such wonderful inspirational posts on here and hopefully I can be an inspiration to some of you as well.

Keep up the fight!

Lisa

elcalabrese

12-19-2011, 04:12 PM

Hi Everyone.
I found this board years ago when I was dx stage 4 back in 2002. It was a lifeline for me. Here I am, now, almost 10 years later. Still on herceptin, but considered NED.
Eleanor

Pmoore

12-19-2011, 07:21 PM

Hi All, I am fairly new to the site .I was dx stage IV 2010 after almost 7 years from my initial dx in 2003. Pia

Jackie07

12-26-2011, 03:07 PM

Seasons Greetings!
Current stats:
Total 97 members* and 414 * years 1 months as of Jan 28, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 6 months and counting
Ahoff (Ann) ____________________________May 2010 IBC __________________________________ 1 year 8 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 5 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) 5 years 1 month and counting
Angela R _____________________________ (2009) April 2011 _______________________________ 9 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 4 years and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ________________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 8 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 3 months and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver __________________________ 5 yrs 5 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung ________________________________ 5 yrs 7 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 4 months and counting
Choyces ____________________ July 2011 neck node and lung __will do Seattle vaccine trial ___ 6 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 4 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 3 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 8 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 9 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 11 months and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 8 months and counting
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver _____________________________ 7 yrs 3 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 3 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial _1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 7 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 8 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 11 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 yrs and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 4 yrs 11 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 6 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial _____ 5 yrs 5 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 2 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 9 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1__ 6 yrs 5 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 7 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 11 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 9 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)_________________ 5 yrs and counting
Joan S. _____________________________________April 2007 ________________________________ 4 yrs 9 months and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 3 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 2 month and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 7 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 5 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 4 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 3 yrs 11 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 11 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 8 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 1 month and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 3 years 11 months and counting
@Laura4252 ________ (High grade DCIS 2005 recur 2009) April 2011 Left Lung __waiting for vaccine __ 9 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 6 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 4 yrs 11 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 3 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 7 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 6 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 6 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year 1 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 5 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 7 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 8 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 2 yrs 11 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 8 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 4 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 3 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 4 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 1 yr 11 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 10 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 1 yr 11 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver _________________________________ 5 1/2 years and counting (3 + years NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 4 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 4 yrs 2 month and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 4 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 yrs and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _4 yrs 10 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 4 months and counting (4 weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 4 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ________________________ 7 yrs 10 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 5 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 yrs and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________ 9 years and counting
Vicky ____________________________ March 2011 Liver Spine ________T-DM1 ________________ 10 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 10 months and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1________ 3 yrs 7 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav.___________________ 3 yrs 6 months and counting (NED)

LizDT

02-03-2012, 06:55 PM

Reading your posts, every one of them, gives me hope and faith. I am Liz T, Mary Ann D's sister of the heart and friend forever. She would have derived great joy in reading these posts, she loved you all... I am not (and pray I will never be) stage 4, I was dxed in May, 1999, had 19 positive nodes and was told by first surgeon "you have 18 months to live". Yesterday I was informed by onc that I am still NED, Praise the Lord!!!... I discovered, through sisters like all of you and my dear Mary Ann , that bc is not a death sentence. There is life after dx. So sisters, thank you for telling your stories... Bless you all, this is a tough journey, but, we are not alone. So many shoulders to lean on, so many voices raised in prayer, and so many survivors saying NO to the beast and YES to life.

KsGal

02-04-2012, 12:50 AM

Jackie, I just want you to know how much your work on this thread has been appreciated. I came to this site thinking I had something like 9-18 months to live, end of story. This thread and the statistics have given me so much hope. It used to be that the thought "I am dying" when through my head several times a day. It doesn't happen like that anymore.
Im still just a baby in the stage IV game, having an initial BC diagnosis in October, and getting a stage IV diagnosis in December with mets to liver. I have a long road ahead of me, but I have hope and faith after reading all of your stories, and I want to be someone who can inspire others some years down the road. Im on taxotere, carboplatin and herceptin right now, and Im doing pretty well after my second treatment. Hoping beyond all hope that Herceptin works for me. Big hugs to you all, I appreciate you so much.

Lettik

02-20-2012, 12:55 AM

Hello all, I am relatively new to this site, but I was diagosed with Stage IV er-/pr- Her2+ grade3 in November 2009.

I was in shock and didn't have a personal computer at the time, so I read everything, and I mean everything I could. Sometimes, I was sorry I did because I didn't know what to think about treatment, survival, doctors, and advice, so I went into overload. Since we are all different, what worked for one may not work for another.

Then there were times, when I was very discouraged and so, I wrote. I wrote about all of it. I wrote when I was angry, when I didn't understand what was going on with my body. I wrote when I was depressed and I wrote trying to change my attitude. Then, I just stopped!?

I made an appontment to see a therapist, but she was 20 or more years younger than I was, and wanted to know what I was hoping to get out of the sessions.
What? See you later.

Then it was going to the breast cancer support group, but they really didn't want someone who was Stage IV and facing "no cure" as they called it.

In Octobger, 2011, my older brother sent me a laptop as a surprise gift. I was also thankful, grateful, and blessed, not only to him, but because I found this site.

Even though I didn't post, I read most everything on this site. When I found this thread, I could not believe the heartfelt stories and how much, some of you have been through. It has been my motivation, inspiration, and comfort, on those days when I just cannot stop the mind from thinking about cancer. I would like to get to the day when "cancer" it is not on my mind, when I wake in the morning and when I go to bed at night.

Thanks to this site, and all of you, I believe I will get there.

Healing energy to all,
Lettik

Jackie07

02-20-2012, 04:21 PM

Current stats:
Total 103 members* and 453 * years 3 months as of March 6, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 7 months and counting
Ahoff (Ann) ____________________________May 2010 IBC __________________________________ 1 year 9 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal ____________________ 7 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 6 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) 5 years 2 month and counting
Angela R _____________________________ (2009) April 2011 _______________________________ 10 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 4 years 1 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ________________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 9 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 4 months and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver __________________________ 5 yrs 6 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung ________________________________ 5 yrs 8 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 5 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial ___ 7 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 5 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 4 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 9 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 10 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 9 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 2 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver _____________________________ 7 yrs 4 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 4 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial _1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 8 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 9 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 yrs 1 month and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ______________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 7 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial _____ 5 yrs 6 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 2 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 10 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1__ 6 1/2 yrs and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 8 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 10 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 11 years 9 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)_________________ 5 yrs 1 month and counting
Joan S. _____________________________________April 2007 ________________________________ 4 yrs 10 months and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 3 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 1 month and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 3 month and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 8 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 6 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 5 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 1 month and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 9 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 1 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 2 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 7 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 3 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 4 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 8 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 7 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 7 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year 2 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 6 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 7 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 9 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 9 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 1 month and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 5 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 4 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 5 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 11 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 1 yr 11 months and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ___________________________ 1 yr 4 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver _________________________________ 5 1/2 years and counting (3 + years NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 5 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 4 yrs 3 month and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 5 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs __________________________ 6 yrs 2 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain ___4 yrs 11 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 1 month and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 5 months and counting (4 weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 5 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 7 yrs 11 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 6 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ____________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 yrs 1 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________ 9 years and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_11 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 11 months and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 8 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. _____________________ 3 yrs 7 months and counting (NED)

laura4252

02-20-2012, 08:54 PM

I have been Stage IV since 2009. I am on Herceptin every 3 weeks, and just started Xeloda three weeks ago. Lung mets, two tumors in right breast. No MX. It's good to hear that we can live fully even with this diagnosis.

Jean

02-21-2012, 01:41 AM

To all the stage IV sisters....

"You are amazing" AMAZING....heartfelt thanks to all of you who have taken the time to share your feelings, thoughts and experiences so that so many others can learn from you. God Bless All.

Special thanks to Jackie "our own dear record keeper"

turbo

02-21-2012, 09:45 AM

stage !V lung mets 5years on Herception only NED

mschwab

02-21-2012, 03:20 PM

You are all so fantastic. Your unbelievable courage and strength is an inspiration to me. Thank you so much for sharing your struggles and triumphs with all of us in this community.

Maryann

Pray

02-22-2012, 01:44 AM

What Maryann said! Thank you each and everyone of You!

Emy

03-04-2012, 01:23 PM

I was diagnosed in 2001 with ductal ca...had rt mastectomy...In 2010 incorrectly diagnosed with primary lung cancer, removed lower right lobe of lung and received 16 weeks of chemo for lung ca(wrong chemo....should have been for breast ca)....In 2011 had liver mets, retested all tissues...never had lung cancer, wrong chemo....was breast cancer..in aug 2011, started taking letrozole daily and every 3 weeks Herceptin...tumor markers went down by Dec 2011, now are doubling higher every 3 weeks...dr said letrazole stopped working....any options???
er+, Her2+, PR-

Lorraine

03-05-2012, 08:32 PM

Thank you Nsebeste, for your inspiring words to us newbees! I receive so much information on this site. Yes, it is advanced and the medical linguistics are a bother to try and follow but....I learn the reality of being dx HER2nue+ and the importance of keeping a sharp eye on all new and developing Rx's.
Lorraine

alex1

03-05-2012, 09:31 PM

15 Aug 2011 – Oral chemotherapy started – Tykerb 250, Xyloda 500
28 Feb 2012 – PET-CT Scan –hepatic metastasis,lymphatic
metastasis,skeletal metastasis

I.V. 3 weekly chemo started PacliALL given as suggested by Onco . What are other options ?

_________________________________________________
Age 38 years
17 Feb 2010 – Mammography – Mass in right breast suspicious of malignancy
19 Feb 2010 – FNA from right breast – Duct carcinoma cells seen
04 Mar 2010 – Right radical modified mastectomy – tumor 3X3X2, LN1/19 +ve
15 Mar 2010 – Hormone receptor – ER negative, PR negative, c erb B2 –
positive score3
25 Mar 2010 – Detection of HER-2/neu by FISH - positive
1 Apr 2010 – Chemotherapy Started – 3 CEF + 4 Docetaxel + Herceptin (3wkly X 17)
30 May 2011 – Course of Herceptin completed
9 Aug 2011 – CT Scan – focal lesion 3.2X2.9cm in segment IV of liver
10 Aug 2011 – PET-CT Scan – solitary hepatic metastasis, precaval LN
suspicious mets
15 Aug 2011 – Oral chemotherapy started – Tykerb 250, Xyloda 500
28 Feb 2012 – PET-CT Scan –hepatic metastasis,lymphatic
metastasis,skeletal metastasis

Jackie07

03-05-2012, 11:28 PM

Alex1,

Penny has just started PARP trial. And T-DM1 has been the buzz word for a couple of years. You can go to the clinical trials board and browse. You can do a 'Search'. You might want to check with your hospital/clinic for clinical trials available in your area, or go directly to the clinicaltrials.gov website.

Hang in there. There are a lot of options available these days. I'm sending you good vibes.

bevilj

03-06-2012, 10:21 AM

2.5 years and counting! Some 'inconvenient' moments along the journey for sure but still going strong~

Never, never, never give up!

Jackie07

03-06-2012, 09:42 PM

Current stats:
Total 108 members* and 458 * years 5 months as of March 25, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 8 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 1 year 10 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 7 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 8 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) __5 years 3 month and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 11 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 2 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 7 yrs 10 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 2 years 6 months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 5 months and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver __________________________ 5 yrs 7 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 5 yrs 9 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 6 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial ____ 8 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 6 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 5 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 10 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain _________ 3 yrs 11 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _________ 3 yrs 1 month and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ___________________________________ 10 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 2 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 5 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 5 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 9 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 10 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 1 month and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 yrs 2 month and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 1 month and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 8 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 7 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 2 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 11 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 7 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 8 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year 1 month and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 11 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 1 month and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 9 years 10 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 2 month and counting
Joan S. _____________________________________ April 2007 _______________________________ 4 yrs 11 months and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 4 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 2 month and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 4 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 9 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 7 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 1/2 yrs and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 1 month and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year 1 month and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 2s months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 10 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 2 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 3 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 1 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 8 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 4 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 1 month and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 5 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 9 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 8 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 8 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year 3 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 7 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 8 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 10 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 1 month and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 10 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 2 month and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 1/2 yrs months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 5 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 6 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 1 month and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1year and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin _________________________ 1 yr 4 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 6 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ___________________________________ 4 yrs 4 month and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 1/2 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs __________________________ 6 yrs 3 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 2 month and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 6 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 6 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 8 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 7 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 yrs 2 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 9 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. _____________________ 3 yrs 8 months and counting (NED)

Salli

04-09-2012, 04:49 PM

Hi everyone. I just joined this site after a couple of days of browsing. What a great group of women. I am Stage IV with mets to bone and liver. First diagnosis was 2 cm, left breast, no node activity. Did a mastectomy. Was never given an option for further treatment at that time. This was back in November, 2008. In October 2010, due to excruciating pain in my spine, discovered bone mets to T11 and T12 area of spine. Also found liver mets with PET scan. I've been on Anastrazole and Zometa infusions since October, 2010. Last PET scan done 5 months ago showed NED. Will continue with Anastrazole and Zometa. Just for some added encouragement, in my oncologist's office there is a board with patient diagnosis and years since diagnosis. There is a mets board with patients stating 14 years and one stating 19 years. Go sisters......

Jean

04-09-2012, 08:16 PM

Hi Salli,
Welcome and thank you for your up lifting story.
So happy for you and that you are dancing with NED.

Hugs and Blessings being sent your way.
Jean

Pray

04-09-2012, 08:49 PM

Hi Salli,

I also welcome you. Gods blessings to you and your family. I hope you start a new thread so you will receive alot more welcomes! You will more noticed.

Peace,

Nancy

Mtngrl

04-10-2012, 04:51 AM

It's inspiring and uplifting to know so many stories of people living full, courageous lives after a Stage IV diagnosis.

Carpe diem!

NEDenise

04-10-2012, 05:20 AM

Welcome Salli!
So glad you are doing well!
If you decide to take Nancy's suggestion, and start a new thread to share your inspiring story...may I suggest the Newcomers section on the board. It's easy to start a thread, and I think your story would be so uplifting to many...who may or may not stumble across it here.

Wishing you continued health!
Denise

Jackie07

04-10-2012, 01:39 PM

Current stats:
Total 109 members* and 461 * years 10 months as of April 10, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 9 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 1 year 11 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 8 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 9 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) __5 years 4 month and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 1 year and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 3 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 7 yrs 11 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 2 years 10 months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 1/2 yrs and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver __________________________ 5 yrs 8 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 5 yrs 10 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 7 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial ____ 9 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 7 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 1/2 yrs and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 11 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain _________ 4 years and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _________ 3 yrs 2 month and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ___________________________________ 10 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 3 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 1/2 yrs and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 1/2 year and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 10 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 11 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 2 month and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 yrs 3 month and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 2 month and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 9 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 8 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 2 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 8 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 9 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year 2 month and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 2 month and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 9 years 11 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 3 month and counting
Joan S. _____________________________________ April 2007 _______________________________ 5 yrs months and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 5 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 3 month and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 5 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 10 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 8 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 7 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 2 month and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year 2 month and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 1 month and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 3 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 11 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 3 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 4 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 2 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 9 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 5 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 2 month and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 1/2 yrs months and counting (NED)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 10 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 9 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 9 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year 4 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 8 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 9 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 11 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 2 month and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 11 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 3 month and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 7 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 6 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 7 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 2 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 1 month and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin _________________________ 1 yr 5 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Salli _____________________ Er+ Her2+ (Nov 2008) Oct 2010 spine, liver _____________________ 3 years 6 months and counting (5 months NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ___________________________________ 4 yrs 5 month and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs __________________________ 6 yrs 4 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 1 month and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 3 month and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 7 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 7 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 9 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 8 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 yrs 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ __________ 9 years and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 1 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 1 month and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 10 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. _____________________ 3 yrs 9 months and counting (NED)

caroline96

04-11-2012, 11:34 AM

Hello everyone. I have been viewing this site for quite a while now but have yet no courage to chime in. I did post a reply once, but that's about it. I have been stage IV since Dec 2010 with mets to left lung, lymph nodes, and bones. I was first diagnosed stage I back in 5/03, NED for 7 years then it came back on annual chest X-ray. Mammograms came back clear, always had been! Strange, huh? My old onc only gave me Xeloda and didn't want to listen to me to retest the receptor status. I left him and went to MD Anderson. After retesting, I was confirmed HER2+ and officially triple positive since then. I am stable now and on Herceptin, Femara, Faslodex, and Zometa.

When I was diagnosed the second time, I was crushed, I couldn't eat, get up, and do my daily stuff. I stumbled upon this site while looking for survivor stories and this group gave me hope. You all have positive way of dealing with this disease and it's contagious! I slowly began to smile again and stand up to what life has dealt me. It's been 17 months now.

Thank you all for such encouraging stories.

Maria

schoolteacher

04-11-2012, 01:03 PM

Glad to hear from you, Maria. Welcome to our group.

Amelia

Lori R

04-11-2012, 04:58 PM

Hi gang!!

I wanted to update the Stage IV survivors list with some good news.

My old friend Abraxane has done the trick one more time.

Although I am completely bald and my finger nails are lifting from their beds (YUK!!)..... As of my April 5, 2012 scan I am back to NED!!! It felt so good to update my lengthy signature with a green, NED status.

Timing is perfect as I get a chemo break and will be off chemo to travel to my nephew's graduation and also for an annual mother/sisters trip. YEA!!! I am day dreaming of all the fun I can pack into a 3 month window before I receive another scan.

For now...I'll take it. Celebrating for sure.

I hope this provides encouragment that and old dog can do old tricks.

Vicki revised

04-11-2012, 07:01 PM

13 months

March 2011: dx advanced IDC stage 4, PR/ER-, HERC2+, tumor in left breast 11cm, tumor in liver 1cm. 6 rounds Taxotere/Carboplatin & Herceptin. Continue Herceptin every 3 wks to current. Post-chemo/pre-mx scan July showed breast tumor 1.5cm, liver met gone. August: bi-lat mx, path report showed NED. Feb 2012 scan: 6 small mets to liver despite normal tumor markers and no pain. Added Tykerb daily. Next scan will be May 2012.

Delaney

04-11-2012, 07:07 PM

lori, great news, congratulations on getting to NED. I am hoping to meet up with that fella myself soon.

dawny

04-12-2012, 12:08 AM

Lori- that is fantastic news that you have NED back, congratulations, go a nd have a great time!
Dawn

Redwolf8812

04-12-2012, 02:24 AM

Awesome, Lori! God is good!

schoolteacher

04-12-2012, 06:18 AM

Lori,

I am so glad to hear your good news this morning. I have been taking Abraxane treatments every two weeks, so far I have taken four treatments. How many months did it take you to get to NED?

I go to the doctor today. Taxol has worked very well in the past for me. I have very little hair left. I have a hat on right now. My toenails look bad. I am going to be glad when summer is here, so I can go bare foot.

Hope to hear your reply soon.

Amelia

Lori R

04-12-2012, 09:24 PM

Amelia,
Given your previous success with Taxol...I am sure the Abraxane will work for you.

Since tumor markers do not work for me, my Onc scans every 3 months. The tumor flare up had reduced 1/2 by 3 months (3 weeks on / 1 week off) and was NED after 6 months.

Other than the finger nail issues, I've found the treatment to be very manageable. I sure hope you find it tolerable as well. Keep us posted!!!!

Lori

schoolteacher

04-13-2012, 12:21 PM

Lori,

Thanks for the response. I have taken 5 treatments every two weeks, so I have two months down. I have five more weeks to work at school, and I would like to be NED by the time school starts back.

You have offered me hope. I am feeling better since the days are long, and I can get more sun light. My tumor marker dropped 7 more points two weeks ago, so I am at 54. I took a test yesterday, and I feel like it should be back in the 40 range. You were diagnosed in October 2007 and I was diagnosed in December 2007. I thank God for my four years and 4 months.

Have a great weekend. Please let all of us know how you are doing.

Amelia

Ellie F

04-14-2012, 02:38 AM

Lori
Brilliant news, you have made my day! Long may you stay NED.

Big hugs from across the pond.

Ellie

Rolepaul

04-15-2012, 09:16 AM

My wife had brain mets found 11/09. Surgery, gamma knife radiation, Xeloda/Tykerb. Then various radiation hot shots for two years. PET found cancer in the Leptomeningeal area of the spine 20-30 hot spots on MRI on 12/14/2011. Radiation for ten days, then intrathecal Herceptin (40 mg for four weeks and 80 mgs since, with topotecan at the increase). IV Herceptin and Navelbine started on February 22. This is the treatment I came up with by researching in forums like this one, looking at cases studies, contacting patients that had success, and always believing in my wife being able to be cured. The nurses told my wife 50/50 for seven weeks, 5% chance to make it 6 months in mid December. MRIs on 4/8/2012 show spine tumors and brain tumors no longer taking the contrast agent, no tumor cells in the blood or spinal tap, and Nina is enjoying a normal life (except for pain in lower back). In other words, listen to this board, research your options, and keep beating on the tumors like crazy. The doctors quote statistics, while I focus on a single patient. Her case will make medical news, help patients, and further careers. I just get to hug her on a regular basis.

"Never give up" - Untouchables; "I hate to lose" - Star Trek II Wrath of Kahn; "Eye of the Tiger" - Rocky III;

In the movie "The Medicine Man" the cure was in the ants that lived in the flowers, not the flowers. The Medicine Man knew that. The Researcher did not discover this until the end of the movie. Sometimes we can discover cures better than the doctors and others. By the way, I did research on many of these drugs used to treat my wife in the mid to late 1980's. If you help one person, it may pay forward back to you.

Mtngrl

04-15-2012, 11:07 AM

Thank you, "Rolepaul." It's great to know stories like this one.

I was switched to Abraxane when I became allergic to the solvent in Taxol. I found it much easier to tolerate.

Jackie07

04-28-2012, 01:34 AM

Current stats:
Total 116 members* and 496* years (and still counting) as of May 20, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 10 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 9 months and counting
Alexandra1('s wife) ____ (stage 3 dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin _ 1 1/2 year and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver _____________________________ 2 years 10 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 10 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 5 month and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 1 month and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 4 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 2 years 11 months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 7 months and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 9 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 5 yrs 11 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 8 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 10 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 8 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 7 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain _________ 4 years 1 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 3 month and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 1 year and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 4 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 7 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 7 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 11 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 3 month and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 yrs 4 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 3 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 10 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 9 months and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year 1 month and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 8 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 10 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year 3 month and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 1 month and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 3 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 4 months and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 1 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 6 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 4 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 1/2 yrs and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 11 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 9 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 8 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 3 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year 3 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 2 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 4 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 4 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 5 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 3 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 1 month and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 10 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 1/2 years and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 3 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 7 months and counting (NED)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 11 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 10 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 10 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 5 months and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 9 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 10 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 year and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 3 months and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year 2 months and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 4 months and counting
@Pamelamary (Pam)_____________Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___Marianne______ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 8 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 7 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 8 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 3 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 2 month and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ________Parp inhibitor___ 1 1/2 years and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) ____________________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 1/2 years and counting
Salli _____________________ Er+ Her2+ (Nov 2008) Oct 2010 spine, liver _____________________ 3 years 7 months and counting (5 months NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 8 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 4 1/2 years and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 8 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 yrs 5 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 2 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 4 months and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 8 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 8 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 10 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 9 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 yrs 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 2 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 2 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 2 month and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 11 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 3 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 3 yrs 10 months and counting (NED)

alexandra1

05-17-2012, 12:04 PM

My wife had a recurance with brain mets 2 months after completing her wbr. They are now giving her chemo. I have been looking for a survivor stories. I thank this thread as my hope has increased more especially after what jackie has put together. Thank you jackie. I am very afraid as i have 3 little girls.

Jackie07

06-08-2012, 02:37 PM

Current stats:
Total 116 members* and 520* years 5 months (and still counting) as of July 3, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year 1 month and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 10 months and counting
Alexandra1('s wife) ____ (stage 3 dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin _ 1 1/2 year and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver _____________________________ 2 years 10 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 10 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 7 month and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 2 month and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 5 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years 1 month and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 3 years months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 8 months and counting
@Calisa71 ____________ Her2+ Er+ Pr+ (1998) axilla nodes/bones 2000 __GKRS 2007 Irinotecan, Tykerb, Herceptin, Xgeva 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 9 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 6 yrs months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 9 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 11 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 9 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 8 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year 1 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 4 month and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ___________________________________ 1 year 1 month and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 5 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 8 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 8 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 2 yr months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 1 month and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 4 month and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 yrs 5 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 4 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 11 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 10 months and counting
@Flutterby ____________________ Her2+ (2003) 2006 2010 2012 Lung ______________________ 9 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year 2 month and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 10 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 11 months and counting (NED)
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 2 month and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 4 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 5 months and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 2 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 7 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 5 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 7 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 2 yrs months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 10 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 9 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 4 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 3 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 5 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year 1 month and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 5 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 7 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 4 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 2 month and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) ________________ 1 year 11 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 1/2 years and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 4 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 8 months and counting (NED)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 10 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 11 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 1/2 yrs and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 10 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 year 1 month and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 4 months and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year 2 months and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs 1 month and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 5 months and counting
@Pamelamary (Pam)_____________Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___Marianne______ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 9 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 8 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 9 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 4 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 3 month and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ________Parp inhibitor___ 1 year 7 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) ____________________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 7 months and counting
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 9 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________ WBR __________________ 4 years 7 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 9 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 1/2 yrs months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 3 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 5 months and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 9 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 9 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 11 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 10 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 yrs 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 3 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 3 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 3 month and counting
Waterdreamer ___________________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _________ 2 yrs 8 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 4 months and counting
@Whonose _________________________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 5 months and counting (NED since finishing chemo)
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 3 yrs 11 months and counting (NED since Dec. 2008)

waterdreamer

06-10-2012, 04:39 PM

Hi, I have been stage IV since late 2009.
I go for a brain MRI on Wednesday, and a CT next month.
Life is better than ever, and my quality of life is great.
We have lots of options, eat well, exercise, only work on relationships that nurture you, and help you heal.

Lauriesh

06-20-2012, 04:57 PM

HI, I just wanted to update my stats. I got the results of my pet scan today and I am still Ned.

I have been Ned for 16 months now.

Laurie

mamacze

06-20-2012, 06:40 PM

WHOO HOO! You go girl! Nothing beats a good long dance with NED!
Enjoy every minute and thank you for updating us with this bucket full of hope!!

Love and hugs,
Kim From CT

Jackie07

06-23-2012, 09:51 PM

Congratulations! Laurie.

Waterdreamer, how did the MRI go? [I'd presume 'No news is good news'?]

Jackie07

06-27-2012, 11:30 PM

Saw this nice article in CancerConnect:

http://cancerconnect.com/groups/breast-cancer/topics/living-with-metastatic-breast-cancer

One woman shares some hard-won wisdom from years of living with metastatic cancer—and encourages laughter along the way.
by Teri Cooper
Borrowed time—technically, that’s what I’m living on. Diagnosed a second time with Stage IV breast cancer metastases to brain, liver, lung and bones, research told me I had two years to live. Fortunately for me, new treatments and good doctors have kept me alive beyond the two years and have inspired the hope of many more. The reality is I can still get hit by a bus tomorrow regardless of my cancer diagnosis, so how has a cancer diagnosis changed my perspective?
For me cancer has been both a blessing and a curse. It has allowed me to get back to things I love, like painting, which is the most relaxing and gratifying thing I can do for myself. I also keep busy with civic groups, ballroom dancing classes, seeing friends, and writing; in other words, “living my life.” In my journey the important thing has been to focus on what I really love and to make time to do it…like traveling and eating ice cream for breakfast! Cancer has taught me what is important to me and how I want to live the rest of my life, regardless of how long it is.
I have also learned that though I haven’t chosen the journey I’m on, I can choose to share the discoveries I’ve made along the way. In some small way, these experiences may help someone else struggling to find their path.
My hair, or the lack thereof, has taught me more than I could have imagined. When I was diagnosed the first time, I started to prepare for the road ahead: I spent a fortune on a wig made of real hair only to find it hot and uncomfortable. In its place, on hot days, I would wear a scarf, and people would inevitably recognize the telltale “cancer coif.” In fact, while out shopping one day, a woman came up to me and identified herself as a fellow survivor: “I recognize that hairdo…I had that too!” She hugged me, and instantly I felt part of a sisterhood.
When I did choose to wear my wig, I found that wearing a wig is very different when you have hair and when you don’t. I found salvation from the irritation the wig caused my skin by placing paper towels between my scalp and the wig to form a cushion to the scalp and absorb the perspiration. (If paper towel manufacturers only knew how thankful I was for the help!)
And finally, having found a wig that is not uncomfortable—it’s synthetic, well-aerated, and looks very natural—people now approach me to ask where I get my hair colored or just to compliment me on my hair. I pause before I answer, but I guess it is mine since I bought it—online, of course!
Since those first days of wig shopping and hair dilemmas, I have finally lost all of my hair. The eyebrow issue was easily solved with an eyebrow pencil, but the trick was finding the eyebrow pencil with the brush attached. Penciling the brow in a shape I liked and using the brush to soften the lines created a more natural look. As for lashes, boy am I glad I had tattoo eyeliner years ago. At last count, I had about five lashes on each eye. (Adding insult to injury, when they fall out, they fall into your eye.) Arm and finally leg hair is gone too. It had seemed so unfair to have to shave my legs and armpits when I had no hair on my head. Now there is equity! On the bright side, I consider how much money I save on hair care products and hair removal.
And yes, years of teasing my husband about being bald finally caught up with me; there I was, post-chemo, with less hair than him. We now joke and say our hair color is “clear.”
Coming to terms with hair loss—and learning to laugh along the way—has been a journey in itself; coping with my prosthetic breast has provided a whole new set of lessons…and laughs. Initially, I went to get my prosthesis and the necessary bras only to end up feeling like I had missile-shaped breasts. I switched back to my regular bras after my incision healed, at first sewing a pocket in for the prosthesis.
After years of doing this I got lazy and would just place the breast in my bras, against the skin, which provided a few memorable moments, like the day I was vigorously digging a hole while gardening and saw what looked like a chicken breast in the dirt. Puzzled, I went to move it with the shovel. Thank goodness I recognized what it was before I touched it: my prosthesis had popped out unnoticed. I stood in the yard laughing at myself; I’m sure the neighbors thought I had lost my mind!
The comic moments that the prosthesis provided were joined by genuine discomfort as I tried to develop a comfortable way to “wear” my new breast. Now, though I still wear my usual bras, I have found a solution for the discomfort of the prosthesis against the skin: I buy a pair of ankle socks and put one on the side that touches the skin. For me this works—as long as I am not doing anything like digging!
Helping my family come to terms with my illness and managing the emotional aspects of this journey has not always been as easy as having a good laugh, but we’ve still managed to find our way. I am a caretaker. I find it eases my mind to look after others, and I’m calmed knowing everyone else is going to be fine. My husband and I talk frequently about cancer and mortality—fortunately for me, he is a psychologist and a good man. My son can question my husband about the cancer without feeling uncomfortable. My stepson calls regularly. I send e-mail updates to my sisters, cousins, and friends because it allows me to give the information without getting emotional. My mother died of AML a few years ago, and my father is a cancer survivor and shows me every day how important it is to enjoy your life. Both have provided good models not only in how to live but in how to say goodbye. Ultimately, I have my faith, and I feel immense support from friends and loved ones.
Managing my hair loss and my prosthetic breast has provided me with just a few of the discoveries I’ve made on this journey, and knowing that my loved ones are taken care of has given me peace at home. The view from the IVth floor is not always pretty, but I hope by sharing what I see, I can help others and maybe share a laugh along the way. There is still joy and hope in my life, and I wish the same thing for all of my fellow survivors.
Outside the Box of a Metastatic Cancer Diagnosis
Remembering that there are exceptions to every rule keeps hope alive in the face of Stage IV breast cancer.

Jackie07

06-27-2012, 11:31 PM

Also from CancerConnect:

Outside the Box of a Metastatic Cancer Diagnosis
Remembering that there are exceptions to every rule keeps hope alive in the face of Stage IV breast cancer.
By Diana Price

When Kaillee Perry was diagnosed with Stage IV breast cancer at 34, it wasn’t the first time she would have to hear a dire prognosis—and then make up her mind to beat it. When she was 13, Kaillee suffered a head injury that caved in one side of her skull (to this day she has no bone there) and caused the treating physician in the emergency room to read her a laundry list of things she would never be able to do again. “Well,” says Kaillee, describing the fighting spirit that refused the grim forecast, “I’ve done every one of those things—with the exception of scuba diving—at least twice. There were so many things they told me that I couldn’t do; I think I lived to spite that doctor.”
Now, facing another tough road when an initial Stage IIB diagnosis of breast cancer metastasized to her liver, lungs, and brain, Kaillee warned her oncologist that she might just be around a while this time, too. In this case, however, she had a supportive doctor on her side as she came to terms with her Stage IV diagnosis: statistics are not set in stone, and there’s no one-size-fits-all strategy here, he told her; every case is different, and everybody responds differently to treatment.
Kaillee respected this response, noting, “In my life I’ve found that more often than not I’m the exception to the rule, whether that works in my favor or not.”
In Kaillee’s family, cancer has appeared often enough that she was aware that it was a possibility. Her maternal grandmother and two aunts were all diagnosed with breast cancer; her father passed away at age 33 from testicular cancer that had metastasized to his kidney and lung before being properly diagnosed; and she has a cousin who currently has thyroid cancer. But again, she was the exception to the pattern where breast cancer was concerned: she was diagnosed 20 years earlier than the other women in her family.
With her initial diagnosis, she says, she felt that “my body was acting funny” as early as two years before she went to the doctor; but at the time she thought that the symptoms she was experiencing were perhaps early signs of menopause (although at 30 she knew that was strange). She felt a lump in her breast, but she thought that it didn’t feel like a cancer lump should—it was soft and more fleshy than she thought was “normal” for cancer, and she figured it might be a cyst similar to those that an aunt had had removed. In addition, she had recently seen her doctor and had not raised any red flags.
By the time she was diagnosed, in January 2003, she had a tumor the size of a robin’s egg and lymph node involvement. Now, she says, she urges women to go to the doctor early. “If it doesn’t feel like a cancer ‘should,’ it doesn’t mean it’s not a cancer,” she cautions. “If you’ve got a lump in there—even if it’s soft—or if you even feel like something is just off, get it checked out.”
Because of her youth and the advanced stage of her cancer, Kaillee’s treatment plan was intense from the beginning. The dose-dense chemotherapy that she endured made her extremely ill and was followed by a mastectomy, reconstruction, and radiation. The process, Kaillee says, was overwhelming and confusing. “There’s nobody there to guide you after you leave your oncologist,” she says, “and we were at a bit of a loss.”
To add to the trauma, the first reconstruction was not done correctly, and she ultimately had to undergo a second surgery to repair it. Here too she cautions other women to listen to their instincts and be proactive: “There were warning signs there,” she says, hints that the reconstruction plan was not going well and that the doctor was not as qualified as he should have been. “He didn’t have photos to show of previous surgery results,” Kaillee says, thinking of the signs that in retrospect may have tipped her off. “He took weeks to return calls; his waiting room was always overly crowded, which I though meant he was good but which I think actually probably meant he was burning the candle at both ends and couldn’t really fully assess a patient’s history properly before making recommendations. But at the time I just didn’t know what to look for.”
Following her treatment and reconstruction ordeal, and after making the decision with her doctor to stop the series of Lupron® (leuprolide) shots because they were causing her too much pain, Kaillee had a brief period of respite. Brief, it turns out, because by summer her blood count was off, although it would take several months to determine where the cancer had metastasized. By October doctors found a few spots on her liver and one on her lung. Kaillee recalls her initial hopefulness—as she told her doctors, “Oh, great, you caught them early; it’s Stage I, right?”—and then the disappointment and the regrouping that followed the doctor’s explanation of metastases and the fact that this was actually a Stage IV breast cancer diagnosis.
Doctors prescribed Herceptin® (trastuzumab), which had a positive effect on her liver right away—two spots went away, and one shrunk considerably. The spot on her lung, however, was not affected and in fact grew a bit after nearly a year on Herceptin. It was biopsied to determine if it was a separate cancer but was found to be of the same origin. It was while Kaillee was in for a CT scan to further investigate her lung that shadows were detected at the base of her skull.
It was back to the drawing board. Facing an entirely new treatment plan, from the beginning Kaillee was clear about her priorities for this new challenge. She would pursue treatment, but she would also focus on her family—including her husband, Rich, and her sons, Pat and Devin—and take the time to enjoy her life. She and Rich decided to take out a life insurance line of credit offered by Fifth Season Financial, a process that they say was made extremely easy and taken care of quickly by the company, as they planned Kaillee’s treatment and thought about how they would like to proceed. With the funds from Fifth Season, the family brought over relatives from England for a family vacation and were also able to buy their elder son Pat the car he needed to commute to work, which they presented to him on his nineteenth birthday. Life was made a little sweeter and easier as they looked down the road toward the treatment that lay ahead.
This time what lay ahead was full brain radiation followed by an oral chemotherapy plan and Tykerb® (lapatinib). And though she was ready to begin this next stage, Kaillee was determined to enjoy her family vacation before embarking on the journey before her. “I plan for the worst, but I don’t lay down to it or live in constant fear of it either,” Kaillee says, referring to her diagnosis with metastatic disease and the many challenges she has encountered already. “There’s still a good fight in me yet.”
The fighting spirit that Kaillee has demonstrated throughout her life—from the childhood injury that she refused to let sideline her to the challenges of her metastatic diagnosis today—is bolstered by the inspiring advances being made in breast cancer research. Her transition from Herceptin to Tykerb, she says, demonstrates the speed at which research is accommodating cases like hers. “Herceptin was just in time for me, and I had very little trouble with it for 15 months; and now Tykerb, which works by breaking through the blood-brain barrier, is helping me along at this stage. There is new stuff happening every day, and they are getting closer to a cure.”
Ultimately, Kaillee says, she encourages women who are delivered a metastatic diagnosis to remain hopeful and to think outside the box. “It’s not that cut and dried,” she says of the statistics about Stage IV disease that they might be handed. “Don’t read too much into it. It’s a very good guideline, but if you buy into it as is, you’ve already lost the fight.” Powerful words, spoken directly from the front lines.

Mandamoo

06-28-2012, 12:47 AM

Thanks for these stories Jackie - I can relate!

No More Tears

06-28-2012, 09:07 AM

Diagnosed stage 4 on Oct 26, 2010 with bone mets. I had a weird experience. The bone mets had caused a pseudo-stress fracture of a vertebra, the pain was so bad, I couldn't get out of bed in the morning, my husband had to lift me out. I had to be lifted on and off the toilet! Had my first chemo in early November, after not being able to move on my own for 2 weeks at all. Got out of the chair after a 4.5 hour infusion on my own! It started working that fast-no one could understand it but I could get in and out of the car the day after my first chemo!

They declared me in full remission after my second chemo in Dec. 2010. Onc could no longer feel the HUGE lump that had been there. Onc is predicting that I will go 4 or 5 years without having to change medication, however he assures me that if anything does come back, there are "12 other drugs we can use". He had one patient who was stage 4 and lived 23 years. She died at the age of 80+ from cardiac issues not related to cancer!

Finished the chemo, had a masectomy in April 2011, and now get herceptin and zometa every three weeks. Just had my bi-annual bone and PET scans and am still NED and feel great!

Andrea Barnett Budin

06-28-2012, 12:45 PM

PLEASE SEE MY -- THIS IS MY NOW time -- thread. I wrote it with all you in mind!

Stay strong, brave and determined...

LOVE ALWAYS AND FOREVER,

ANDI BB

Jean

06-28-2012, 03:37 PM

Jackie,
All I want to say to you is, "Thank you" you are one very special lady and I am so humbled by your strength, love of life and the good strong energy that you share with us.

God Bless,
Hugs,
Jean

Jackie07

07-16-2012, 07:08 PM

Current stats:
Total 118 members* and 539* years 2 months (and still counting) as of July 21, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 9 years and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year 2 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 11 months and counting
Alexandra1('s wife) ____ (stage 3 dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin _ 1 1/2 year and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver _____________________________ 2 years 10 months and counting
@A. L. Pendley ________________ (1999) 2004 lungs, bone, lymph, 2012 Brain _H, Ty, X, Xgeva _ 8 years and counting.
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 years till 2008 _ 17 years and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 7 months and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 3 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 6 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years 2 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 3 years 1 month and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 9 months and counting
@Calisa71 ____________ Her2+ Er+ Pr+ (1998) axilla nodes/bones 2000 __GKRS 2007 Irinotecan, Tykerb, Herceptin, Xgeva 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 11 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 6 yrs 1 month and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 10 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 9months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year 2 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 5 months and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 1 year 2 month and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 1/2 years (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 2 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 2 month and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 5 month and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 1/2 yrs and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 5 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 4 yrs and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 11 months and counting
@Flutterby ____________________ Her2+ (2003) 2006 2010 2012 Lung ______________________ 9 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 11 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 6 years and counting (NED)
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 3 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 5 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 2 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 1/2 yrs and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 3 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 8 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 1/2 yrs and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 8 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 2 yrs 1 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 11 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 10 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 5 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 4 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 1/2 year and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year 2 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 6 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 7 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 5 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 3 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 8 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 5 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 9 months and counting (NED)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 1 month and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 11 yrs and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 8 yrs and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 7 months and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 11 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 1 year and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 yr 2 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 5 months and counting (NED till mid 2012)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 4 months and counting
No More Tears _____________________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 1 year 9 months and counting NED
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs 2 months and counting (NED since 2005)
PAFB _______________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 13 1/2yrs and counting
@Pamelamary (Pam)_____________Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___Marianne______ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 10 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 10 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 5 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 6 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 4 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ________Parp inhibitor___ 1 year 8 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) ____________________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 8 months and counting
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 10 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________ WBR __________________ 4 years 8 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 10 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 yrs 7 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 ½ yrs and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 10 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 1year and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 11 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 ½ yrs month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 4 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 4 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 4 month and counting
Waterdreamer ___________________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _________ 2 yrs 8 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 5 months and counting
@Whonose _________________________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 6 months and counting (NED since finishing chemo)
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 4 yrs and counting (NED since Dec. 2008)

KDR

07-16-2012, 07:11 PM

I have to pin a gold medal on AndiBB. Our Olympian.
Love
Karen

Nancy L

07-21-2012, 02:25 PM

FYI-sadly, I am no longer NED. In limbo for next treatment option.

StephN

07-21-2012, 04:59 PM

Sorry to learn of non-NED status, Nancy.

He WILL come back to you. You responded well before and can do it again.

Keep us updated on the treatment you go with.

Andrea Barnett Budin

07-23-2012, 09:56 AM

Oh, Nancy. Try to think of NED as being on vacation. He'll write. He'll call. He'll return.

I posted a new thread (below) -- with you, Nancy in mind.

Finding your power...! - HER2 Support Group Forums (http://her2support.org/vbulletin/showthread.php?t=55253)

I pray my words, and experience, bring you some degree of comfort and inspiration, my dear Sister Nancy. I surely know how sorely you are needing these at this scary moment. And it is my prayer that many can draw strength and courage from all the stuff in that thread.

Apologies for so much info. Just please take the time to trudge on through it all. I promise, I believe it will buoy you!

Don't give up. Never give in...

Much Love and Light,
Andi

KristinSchwick

07-24-2012, 10:45 AM

Great news everyone! Waterdreamer- what subtype are you? ER/Her2?

It's been alittle over a year for me with the bone mets. No pain, great quality of life, only a few chemo related side effects (mild shits). Jogging and biking 3x week!

NEDenise

07-24-2012, 05:22 PM

Jackie,
I guess it's time for me to join this elite group of beautiful warriors.
Initial diagnosis Feb 3, 2011 ER/PR- Stage 3c
Stage IV diagnosis Jul 23, 2012

I leave the months and years to you...your much better at than I am. :)
Denise

Delaney

07-24-2012, 07:52 PM

I got clear brain mri today. Battle on to deal with skin and lung mets, onto Myocet, then TDM1 if that does not work. Really only got six week break between Early Stage 11 and incurable Stage 4. BooHoo

Pray

07-24-2012, 08:33 PM

Nancy L. I m so sorry you are back at the fight. Your in my prayers. Gods blessings to you.

Dense, I couldn't be more proud to know you and consider you a goto friend. Being dx. yesterday and declared your status today! You are so much younger than me and so unbelievably strong!

Delaney, How wonderful for you with the MRI! One down! Gods blessings to all of you inspire me so! I'm sure everyone else her also! Peace My Friends

NEDenise

07-25-2012, 09:03 AM

Yay, Helen!
We Irish ladies are tough!!
So happy to hear your great news! You inspire me to fight on!
Hugs
Denise

Ellie F

07-25-2012, 11:49 AM

Denise, really glad you're back on the board after a horrible shock. Pleas let us know how your consultation and treatment plan goes as we care a lot and want to be there for you.

Nancy, sorry to hear that you need to change your herceptin/ tykerb combo but I am sure you will soon be back to NED. I remember you posting that Dr Slamon was your onc so I know you will receive the most current options available and the best advice.

Delaney, really very glad about your brain MRI especially as you are only a little bit of water away! I pray that you can now get these other mets under control and especially hopeful as I didnt know T-DM1 was available in Ireland. Let's hope England catches up soon.

Ellie

Delaney

07-25-2012, 07:30 PM

TDM1 not available in Ireland just yet Ellie, but my oncologist tells me its on the way - soon - and its so very welcome, we are talking Autumn!!!!!!!!!!!!!!!

Jackie07

07-26-2012, 08:01 PM

Current stats:
Total 122 members* and 555* years (and still counting) as of August 26, 2012
@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."
Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)
@11yrs5xsr5r (Laurie) _________ 1998 Pancreas Peritoneal Lung ______ Navel/H, T-DM1, Ixempra, Eribulin 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 9 years and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year 2 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 11 months and counting
Alexandra1('s wife) ____ (stage 3 dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin _ 1 1/2 year and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver _____________________________ 2 years 10 months and counting
@A. L. Pendley ________________ (1999) 2004 lungs, bone, lymph, 2012 Brain _H, Ty, X, Xgeva _ 8 years and counting.
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 years till 2008 _ 17 years and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 7 months and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 3 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 6 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years 2 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 3 years 1 month and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 9 months and counting
@Calisa71 ____________ Her2+ Er+ Pr+ (1998) axilla nodes/bones 2000 __GKRS 2007 Irinotecan, Tykerb, Herceptin, Xgeva 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 11 months and counting
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 6 yrs 1 month and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 10 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 9months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year 2 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 5 months and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 1 year 2 month and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ______ 6 1/2 years (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 2 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 2 month and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 5 month and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ________ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone ___________ 2 1/2 yrs and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver _____________________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs 5 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 4 yrs and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 11 months and counting
@Flutterby ____________________ Her2+ (2003) 2006 2010 2012 Lung ______________________ 9 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 11 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 6 years and counting (NED)
@Jacqueline1102 (Jackie) _______ IBC Oct. 2011 Liver ________ Perjeta and Herceptin _________ 10 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 3 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 5 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 2 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 1/2 yrs and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 3 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 8 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 1/2 yrs and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 8 months and counting
@KayeR_______ Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs __tamoxifen, Zoladex and H 1 yr 1 month and counting
(Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 2 yrs 1 month and counting KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 11 months and counting Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 10 months and counting (6 yr NED) Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs 5 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 4 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 1/2 year and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year 2 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 6 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 7 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 5 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 3 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 8 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 5 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ________ Taxol + TDM-1 _________ 4 yrs 9 months and counting (NED)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 1 month and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 11 yrs and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 8 yrs and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 7 months and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 11 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 1 year and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 yr 2 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 5 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain __________________________ 1 month and counting
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 4 months and counting
No More Tears _____________________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 1 year 9 months and counting NED
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs 2 months and counting (NED since 2005)
PAFB _______________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 13 1/2yrs and counting
@Pamelamary (Pam)_____________Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___Marianne__ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 10 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 10 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 5 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 6 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 4 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ________Parp inhibitor___ 1 year 8 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) ____________________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 8 months and counting
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 10 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________ WBR __________________ 4 years 8 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 10 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 yrs 7 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 ½ yrs and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 10 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 1year and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 11 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ___________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 ½ yrs month and counting
Unregistered (8-25-2011 #106) __________________________________________________ __________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 4 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 4 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 4 month and counting
Waterdreamer ___________________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _________ 2 yrs 8 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 5 months and counting
@Whonose _________________________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 6 months and counting (NED since finishing chemo)
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 4 yrs and counting (NED since Dec. 2008)

Emy

08-08-2012, 07:40 PM

Was diagnosed with ductal ca in 2001...had right mastectomy, on tamoxifen for 5 years....in feb 2010, incorrectly diagnosed with lung ca..never smoked...had right lower lobe of lung removed and 16 weeks of carboplatin chemotherapy...in mar 2011, found spot in my liver....redid all tests...found I never had lung cancer, but her2 positive, estrogen positive, program neg...fish5.4.....started herceptin sept 2011..diagnosed stage 4.....feb2012 herceptin stopped working...mar 2012 started taking 6 pills tykerb daily and herceptin every 3 weeks along with fulvestant...with tykerb and herceptin last pet scan showing liver spots decreased and spots on bone disappeared....

Andrea Barnett Budin

08-08-2012, 08:04 PM

Oh Emy! We're all here with you.

They did a biopsy of lung tumor/tissue? Pathology report turned out to be wrong? How could such a thing happen??? 16 wks of carbo. Unnecessarily???

Estrogen positive. Progesterone negative????

Don't know what fulvestant is. Surely know HER2 positive and Herceptin. Not familiar with it stopping being effective so fast. But with Tykerb liver spots shrinking and bone spots disappeared. Fabulous news.

Finally, good news! Loks like you've found you're recipe for success.

How do you misdiagnosis lung ca? or was it bc in the lung????

Please keep us all posted on what is happening now.

Where do you live? Did you get 2nd opinions? All around? And 3rd??? I've learned quickly to educate myself as best I could, in a New York minute as they say, by gathering opinions. 2 path reports. Collect ev test report from everyone. Keep on top of everything and in charge while dealing with frantic feelings and shock. You just have to do what you have to do?

Are you doing all this with a husband, friend, family member? 4 ears and 2 heads are so much better than going it alone.

We are all here -- with you -- to help, support, share our experience... all the time.

Loving energy coming at you,
Andi

Andi

NEDenise

08-09-2012, 06:13 AM

Jackie,
I am so touched that you have gone to the trouble to update my Stage IV survival by the day! You are certainly a devoted and caring friend! Thank you!
Hopefully, one day I'll be in the decade counting category!
Big hug headed your way!
Denise

Redwolf8812

08-22-2012, 03:32 AM

Stage 4 as ER-/PR-/HER2+ AND BRCA2+
Anyone else have this charming combo? I was told it's a rare mix. So far I know of two other women on another board with it. Was just wondering if there's anyone else and what you're doing for treatment (I'm too lazy to "search").

Penny

pibikay

08-23-2012, 03:30 AM

What is BRCA2+

Jackie07

08-26-2012, 06:23 PM

Current stats:

Total 127members* and 648* years 10 months 9 days (and still counting) as of Sept. 2, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)

*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ______ 9 years 2 months and counting
Ahoff (Ann) ____________________________ May 2010 IBC ____________________________ 2 year 4 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal ________________ 1 year 1 month and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin ________ 1 year 9 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ____________________ _________ 3 years 2 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva __________ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 years __ ____ 17 years 2 months and counting (NED since 1999)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________ ________________1 year 5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ____________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ___________ 8 years 4 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______ 3 years 3 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 yrs 11 months and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ________ 9 yrs and NED
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ____________________ _________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ____________________ _________________ 6 yrs 2 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone __________ _________________ 3 yrs and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _______ 1 year 2 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________ 6 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver ____________1 year 4 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ___ 3 yrs 7 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) 1 year 4 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 8 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 7 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ______________ 2 year 6 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung _____________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______ 2 yrs 3 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung _________ 2 years 7 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _ 2 yrs 8 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 7 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 2 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 2 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6yrs 1 month and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_ 7 yrs 1 month and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 3 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________11 months and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _ 1 year 5 months and counting
@jkdowl ________________ (Dec 2010 III) Feb 2011 Bones ____________________ 1 year 7 months and counting
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 4 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 8 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 5 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 10 months and counting
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 8 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 10 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 2 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 3 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 1 month and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 7 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver _______________ 8 years 6 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 4 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 8 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver _________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 7 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 5 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 10 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 7 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 4 yrs 11 months and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 2 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 2 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 9 months and counting
@Midwest Alice ____ ER- PR- Her2+ April 2008 IBC Spine ______ Enalaprial for heart ____ 4 years 5 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 1 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 1 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 2 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 5 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 7 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 1 month 10 days and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 6 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 1 year 11 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 4 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 7 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 4 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin _ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec., 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 8 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 ____________________________ 5 yrs 8 months and counting
Unregistered (8-25-2011 #106) __________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb __________ 1 year 6 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 6 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 6 months and counting
Waterdreamer ___________________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _________ 2 yrs 10 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 7 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 8 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 2 months and counting (NED since Dec. 2008)

Bunty

09-01-2012, 06:43 AM

Hi Jackie, I wondered whether I should have my 'membership' updated to NED since my PET/CT results from July scans showed no active cancer at all (just evidence of previous mets, but not sure if that actually means NED)? I just thought it gives a bit of hope to see another NED.... Fingers crossed it lasts a lonnnnnggg time!

Cheers Marie

Jackie07

09-01-2012, 03:41 PM

Congratulations! I'm so happy for you!

Certainly. And I've removed the '@' by your name! :)

pibikay

09-04-2012, 05:58 AM

All the best Bunty

capburke

09-07-2012, 08:35 AM

It's been a roller coaster but it hasn't slowed me down :) Primary dx and 2 lymph recurrences in two years hasn't been fun but it's not all been bad. I've had more time for my two small children, I've had time to work on my dissertation (should be finished by December!!), and I've spent a lot more time doing what I want to do. I've also developed closer relationships with family and rediscovered friends that I hadn't had time for during my chaotic corporate/commuter existence.

I hope and pray that this is it for me--that I beat the odds of the diagnosis and that I'm NED forever. But without this experience I wonder if I would have ever realized how much life I was wasting on stupid things.

vonny

09-08-2012, 07:03 AM

So many names Jackie, fantastic. Thank you for pointing me in this direction, I certainly needed it!!

Andrea Barnett Budin

09-08-2012, 01:03 PM

Hooray for you, Cristina! In fact for everyone on this board!!!!!

I tell myself every single day, Remember to say Thank You. I look at the little pewter figurine I have on bended knee, arms outstretched, palms and forehead to the floor -- then I look up, and say out loud -- THANK YOU FOR MY LIFE. I smile joyfully. My voice quivers on the word Life.

Then, I instruct my body and announce to the Universe -- HEALTHY AND WELL. NO MORE CANSER. I do these things several times a day.

That figurine sits next to my sink, on a little onyx colored marble sample as a kind of pedestal. We must all continue to be grateful for every little blessing in our lives. And, just like Carla, I began to notice them more once I was diagnosed. As I found myself with the time to ponder, hug more, receive more love...

Sure our world is turned upside down, but there's a remarkably wondrous side to that too...

Andi

NEDenise

09-08-2012, 02:36 PM

Vonny,
I agree...Our Jackie Rocks!!
Thanks again, Jackie for maintaining this wonderful list!
I re-read it every time I need a reminder that I CAN do this...I WILL be a 10, 20, maybe even 30 year survivor someday!
Denise

Andrea Barnett Budin

09-08-2012, 02:49 PM

Oh gosh, YES. Our Jackie is beyond wonderful to us and for us!! Blessings on your head. http://cdn-cf.aol.com/se/clip_art/peeps-emt/dating/clips/greatest-clip, Jackie. Truly. Genuinely. You rock all our worlds. You keep us focused. You help make and keep us strong. With your living proof list of those who have defied the stats and created new stats...

These days, Denise, I figure -- I'm going for 100. And of course the way to do that is to be a Betty White vigorous and spry. Sharp mind, full of spit and vinegar... Oh and humor. An essential to good health.

I used to give myself mini goals. At 50 when dx, I aimed big -- for Medicare age. Well, I am more than here! I envisioned myself at my first grandchild's Bat Mitzvah (which occurs at the ripe old age of 13). I lived to see her born, but I was picturing myself far, far into the future in vivid detail. And I lived that dream!!!!!!!!!!!! She will be 16 in November.

So, then I started seeing myself at grandchild #2's big day, which will happen next month, in October. And I'm going for GRADUATIONS, FROM HIGH SCHOOL -- AND COLLEGE. I'm seeing myself at WEDDINGS. Becoming a Great Grandmother (a Gigi -- GG, get it?!). Presently, I am a Mima. So, I'm planning.

Don't sell yourSelves short, Ladies. Think BIG...!!!!!!!

Andi

Jackie07

09-09-2012, 09:12 AM

Current stats:

Total 130 members* and 651* years 3 months 25 days (and still counting) as of Sept. 18, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)

*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 2 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 4 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 1 month and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 9 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 3 years 2 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva ___ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 2 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 9 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 4 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 4 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 3 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 yrs 11 months and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 2 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 2 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 6 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 4 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 3 yrs 7 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) 1 year 4 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 8 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 7 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 year 6 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______ 2 yrs 3 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 7 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 2 yrs 8 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 7 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 2 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 2 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6yrs 1 month and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver ________________________ "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_ 7 yrs 1 month and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 3 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________11 months and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 5 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine ____________________ NED since Oct 2011
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 4 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 8 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 5 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 10 months and counting
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 8 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 10 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 2 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 3 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 1 month and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 7 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 6 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 4 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 8 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver __________________ 9 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 7 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 5 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 10 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 7 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 4 yrs 11 months and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 2 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 2 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 9 months and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 5 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 1 month and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 1 month and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 1 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 2 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 4 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 5 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 7 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 1 month 10 days and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 6 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 1 year 11 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 4 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 7 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)__ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 4 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec., 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 8 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 5 yrs 8 months and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 6 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 6 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 6 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 2 yrs 10 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 7 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 8 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 2 months and counting (NED since Dec. 2008)

evergreen

09-10-2012, 10:08 PM

I am not stage 4 yet, but am realistic about my prognosis. My question to you... Did you suspect mets because you had symptoms? What kind of symptoms? Or was it found in routine tests? I feel selfish asking this of you, but I wonder about every ache, and am unsure if it is getting older, or my exercise program, or stress, or past chemo effexts or mets, etc. Etc.

vonny

09-11-2012, 11:06 AM

Hi evergreen
When my daughter was diagnosed with Breast cancer and secondary to the spine all in the same week, she had no symptoms at all. She found a lump in her breast, that was it!! Secondary only showed up on the mri scan, she still doesn't have any symptoms i.e. pain etc. Before she started her treatment she looked and felt a picture of health.....very strange!

Andrea Barnett Budin

09-11-2012, 04:20 PM

Hi Ever! Hi Vonny!!

As patients we're part of a team. And what we choose is the result of our gathered expert opinions and our understanding of studies.

I had bld work done ev 3 mnths back in '96. I would compare ea # w/the last time I was time I was tested and w/the normal ranges. In '98 my liver enzymes were "slightly elevated". Docs said, I wouldn't worry about it. 3 mnths later -- same scenario. What could be causing that?, I asked. Lots of things. The statin you take for example. I wouldn't worry about it.

3 mnths later -- same deal. I proclaimed that I was officially worried and asked for a sonogram.

That was approved as something that could be substantiated (to the ever-loving insur co) and that led to the CT scan which led to the biopsy. There were multiple tumors, too many to count, throughout my liver.

I felt great! No symptoms. Healthy and well.

When I was initially dx (in '95) I felt a general hardness in my breast. I could fit this hardness in the palm of my hand. And it seemed to move when I manipulated it. I assumed it was a cyst or the like and would probably require surgery to be removed. It was NOT a lump, a little hard pea or marble as others had described what I should look for in my mnthly self-exams...

I called my gyn who couldn't see me for over a wk. Even though I was concerned! I should have known to push his assistant harder. I learned that after the fact. Sometimes we must speak up. Not yell, but human to human appeal a bit enthusiastically and emphastically. It's okay to do that. It's our responsibility to do that!

I called her back and suggested I move my mammo up a few mnths. She said that sounded like a good idea. She was dispassionate and disinterested I noted.

When I called my Imaging Center they couldn't see me for 2 wks! (I wanted the doc to have as much information as I could gather.) I was increasingly feeling alarmed. My Inner Voice was pushing me. I still felt healthy and well...

My friend suggested I call her Imaging Center. I did, and they said, That's amazing! We JUST had a cancellation! It's for Friday at 4 o'clock. I'll take it!, I yelped.

Turned out to be a 9 cm tumor. The Radiologist was obviously shaken. She did a sono after she read the mammo. She did it twice. Then, she told me to get dressed and meet her in her office.

She told me breathlessly, as I sat across from her, her eyes locked on mine -- YOU NEED A BREAST SURGEON. Ok. Is it a cyst? WHAT YOU HAVE IS A SOLID MASS!!! I wasn't sure what that meant. No mention was made of cancer. But she did offer to call an excellent breast surgeon for me. His name was the same as the one I'd already gathered from friends who'd had need of such of a person.

I never had a lump. Ever. "This" wasn't a lump, a marble or a pea! A solid mass sounded ominious though I had no understanding at the time!

It was then 5 o'clock of 4th of July weekend, 1995. She called and found his office was closed. She turned to me, very anxious, till Tuesday! Suddenly she remembered, I have his home phone number. I nodded. Do you want me to call him? I managed to say, YES. She did and I heard what she said and I was shivering in my boots/heels when I overheard her descriptive words. She turned to me and said, His office is closed till Tuesday -- but -- he will meet you at his office tomorrow (Saturday) if you'd like. Yes!

He opened his darkened empty office just for me at 10 in the morning. I knew I was in big trouble.

I never had any pain. I felt healthy and well, joyful and excited. We'd just seen our 2nd dghtr graduate from Law School, sold our 26 yr old house and found a new home closer to the city where my husband worked. Life was grand... The contracts were signed on Wed and Thurs. And then, our lives turned upside down...

You've all been there. You know...

Somehow we keep putting one foot in front of the other and move onward, forward and upward... as clear-headed as we can possible manage, cause we understand our lives depend on it. God bless you all!

Love and Light,

Redwolf8812

09-11-2012, 05:00 PM

Wow, Andi! That is one impressive story! Thanks for sharing!

Andrea Barnett Budin

09-11-2012, 07:37 PM

Ever,

You are not selfish! You are concerned. And rightly so. And we are all here because we want to share our experience, in the hopes of helping others see what we didn't see ourselves before we were far along in this journey. We were newbies, naive in ways medical.

Once dx we must learn a whole new vocabulary. Educate ourselves about things we never had any need or desire to learn about. And now it has become of vital importance for us to grasp so much, beyond the lingo, into the whys, the what ifs, the unimaginable.

It is our honor to serve to reach out to you. Others did so for us. It is now our turn to give back.

Yes, every ache and pain causes clutching worries. What does it mean? Is this something I should report to my doc? Probably yes. Cause she can't read your mind. He shouldn't have to anticipate what may or may not occur.

My friend w/pancreatic ca collapsed in the streets of Manhattan, where she lived, on a weekend. She didn't tell her docs till Monday. She didn't want to bother them. They were upset -- because that's what they do. They are there to help when things turn sour. They are open on the weekends so that when situations arise, they can help.

Collapsing, especially after such an adverse reaction to so many mnths of intense chemotherapies, is serious. You aren't bothering docs with your ailments. That is their job. And they would be the first the tell you this.

I would call and ask, I just want to know if this or that is a normal reaction, cause it is what I am experiencing. I feel doubled over with pain in my abdomen. I feel spacey and out of it. I feel confused and shaky. I feel as if my knees are going to give way any moment. And my docs would advise me accordingly.

Once I said, I know it sounds crazy but even though it's been yrs since I had Taxotere, I sometimes feel that same deep muscle pain in my arms and legs that aches so fiercely I can't find a place for myself. He answered, No, that isn't crazy. A number of my patients report the same thing.

And then the pain didn't bother me as much. It was normal. Others were experiencing the same thing. It was an indication of some good awful problem. A lingering side effects, even yrs later, than eventually did disappear btw.

Never feel guilty asking questions, Ever or anyone on this board. Please. No question is stupid. Or crazy. And you deserve answers!

And Red, I think we could all benefit for sharing our experiences... Don't you?

Andi

Mandamoo

09-11-2012, 07:54 PM

As Andi said - it can't hurt to ask. I had no symptoms to speak of apart from a change on my skin during chemotherapy (I had stage 2b and w being treated with fec) - thought it was chemo related, it didn't go away and started to change when I had taxotere - I again showed my onc who ordered a biopsy straight away - results more cancer, PET scan following day revealed innumerable small spots in my lungs. I still have spots in my lungs but I have no symptoms - I look and feel (mostly apart from drug side effects) perfectly healthy!
I not believe you can live your life in fear though - information is good but I try to only look at today.

Sharing is wonderful.

Hongdo

09-14-2012, 07:39 AM

Hello,
I am new here, looks like I am a stage iv sister are have a 9cm tumour in my left breast, with lymphs involved (don't know how many) and liver met.
I am 42 with 3 children aged 14, 12 & 8 who I am bringing up on my own.
I know I have a long journey ahead but will get through it. I have been very encouraged by all the stories I have read on here.

jkdowl

09-18-2012, 03:02 AM

Dx 12/10 stage4 to spine Er/Pr neg her2pos Ned since 10/11

Jackie07

09-18-2012, 10:39 AM

Current stats:

Total 134 members* and 663* years 9 months (and still counting) as of Oct. 22, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 3 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 5 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 2 months and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 10 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 3 years 3 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva ___ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 3 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 10 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 4 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 5 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 4 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 years and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@Cat _____Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 1 months and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 1 month and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 3 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 3 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 3 yrs 8 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane wkly - 16 wks Herceptin every 3rd wk (Sept 26 NED) 1 year 5 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 9 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 year 7 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/ 3years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 11 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung ______ 2 yrs 4 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 8 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 2 yrs 9 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 8 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 4 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 3 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 yrs 2 months and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver ________________________ "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 6 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 4 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 6 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 1 year 8 months and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 5 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 9 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 6 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver______________ 1 year and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 9 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 11 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 3 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 4 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 2 months and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 1 month and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 8 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 7 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 5 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 9 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver __________________ 10 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 8 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 6 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 11 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 years and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 3 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 3 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 10 months and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 6 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 2 months and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 2 months and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 2 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 3 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 5 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 5 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 8 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 3 months and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 7 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 5 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 9 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)__ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 4 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P 8 months and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 8 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 9 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 1 month and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 1 month and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 2 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 5 yrs 9 months and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 7 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 7 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 7 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 2 yrs 11 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 8 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 9 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 3 months and counting (NED since Dec. 2008)

Lauriesh

11-14-2012, 05:45 AM

Wanted to bump this up for any new stage 4 members, and also wanted to update that I got the results of my pet scan yesterday and still NED. 21 months !

The best part always is telling my 10 year old daughter. She is always so excited every time I tell her the cancer is still gone.

Laurie

pwiswell

11-14-2012, 11:39 AM

I've been stage IV since 2009 with bone mets and am doing fine. Currently on Xeloda and Tykerb and all is well. I have two pre-teens and plan to be around to raise them. Prayers to all my stage iv sisters.

Jackie07

11-20-2012, 11:37 PM

Current stats:

Total 134 members* and 664* years (and still counting) as of Nov. 22, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January [2011]. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 3 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 5 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 2 months and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 10 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 3 years 3 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva ___ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 3 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 10 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 4 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 5 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 4 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 years and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@Cat _____Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 1 months and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 1 month and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 3 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 3 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 3 yrs 8 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane wkly - 16 wks Herceptin every 3rd wk (Sept 26 NED) 1 year 5 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 9 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 year 7 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/ 3years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 11 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung ______ 2 yrs 4 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 8 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 2 yrs 9 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 8 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 4 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 3 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 yrs 2 months and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver ________________________ "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 6 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 4 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 6 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 1 year 8 months and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 5 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 9 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 6 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver______________ 1 year and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 9 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 11 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 3 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 4 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 2 months and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 1 month and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 8 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 7 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 5 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 9 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver __________________ 10 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 8 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 6 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 11 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 years and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 3 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 3 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 10 months and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 6 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 2 months and counting
@MJsHusband (MJ) ____ IBC Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 2 months and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 2 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 3 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 5 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 8 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 8 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 3 months and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 7 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 5 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 9 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR) Liver ablation _ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 4 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P 8 months and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 8 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 9 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 1 month and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 1 month and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 2 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 5 yrs 9 months and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 7 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 7 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 7 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 2 yrs 11 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 8 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 9 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 3 months and counting (NED since Dec. 2008)

dawny

11-21-2012, 03:13 AM

Thank you Jackie, for keeping track of all of this! It is great to read, thanks for all of your hard work!
Dawn

jcepregi

01-06-2013, 01:43 PM

I was diagnosed with Stage IV @ 34 years old. I just passed my 26 month mark. I've been doing weekly chemo for almost 2 years now, 4th different treatment. I go in this week for my PET/CT scan and am nervous. Although reading all of your posts make me really hopeful! THANK YOU!! Good luck, God Bless, and much love and light to you all.

Bunty

01-09-2013, 05:35 AM

Hi Jcepregi! I just happened across your post here. I'm glad you found us here as it is indeed a wonderful place to share and gain support and advice.

Perhaps you might like to introduce yourself on the Newcomers/Welcome section of the forum, as perhaps others may not have noticed that you have found us.

Best wishes for your PET/CT - so many of us know how worrying a time this can be. Let us know how you go.....

Marie

Jackie07

01-09-2013, 06:25 PM

Current stats:

Total 135 members* and 665* years 11 months (and still counting) as of January 9, 2013
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ (http://www.mbcnetwork.org/) and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)

@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 1/2 years and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 8 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 5 months and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 11 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 10 months and counting
@A. L. Pendley ___________ (1999) 4/2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva _ 7 years 9 months and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 6 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 6 years 1 month and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 9 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 5 years month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 10 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 8 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 7 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________ 5 years 3 months and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) __Er+Pr+(Her2- May 2003) Dec 2010 lung/nodes, bone ___ XHZ THZ Now HFFZ ___ 2 yrs and 1 month (bone clear)
@Cat _____Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 4 months and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs 5 months and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 7 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 4 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 6 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 4 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years 3 months and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 6 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 8 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 3 yrs 11 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane wkly - 16 wks Herceptin every 3rd wk (Sept 26 NED) 1 year 8 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 7 years (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years 3 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 years 3 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __ 2 years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 4 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung __ Herceptin ____ 2 yrs 7 months and counting (NED March 2011~2012)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 8 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 11 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 3 yrs and counting (NED till 1-2012)
Emy (Eileen) __________ Er+ Her2+ (2001 DCIS r. Mastmy+Tmxfn) 2010 Lung 2011 Liver ______ 2 yrs 8 months and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 11 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 7 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 6 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 yrs 5 months and counting
@Flutterby ____________ Her2+ 2003 Nerve endings 2006 2010 2012 Lung _________ 9 1/2 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain __T-DM1______ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver _____________4 months and "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 9 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 1/2 years and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year 3 months and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 9 months and counting
jcepregi ____________________ Nov 2010 _________ weekly chemo – 4th different treatment 2 yrs 2 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 1 year 11 months and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 8 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 6 yrs and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 9 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver______________ 1 year 2 months and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 10 yrs and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 7 yrs 2 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 1/2 yrs and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 7 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 5 months and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 4 months and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 11 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 10 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 2 years and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 8 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 2 years and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver Brain _____________ 1 year 1 month and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 11 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 9 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 1/2 years and counting (NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 3 years 2 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 11 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 yrs 3 months and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 years and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 7 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 1/2 yrs and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 3 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 2 yrs 1 month and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 9 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 5 months and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 5 months and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 5 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 1/2 years and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 8 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 year 8 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 11 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 1/2 year and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 10 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years 3 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 8 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 15 years and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 11 months and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)__ 10 yrs 4 months and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years 3 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years 4 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 9 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 10 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 4 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 2 yrs 2 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 3 years 2 months and counting
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year 4 months and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 5 years 2 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P T-DM1 __ 11 months and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 8 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 9 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 4 months and counting (4 months NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 4 months and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 1/2 years and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 5 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 6 years and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 10 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 10 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 10 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 3 yrs 2 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 11 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 6 years and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 1/2 yrs and counting (NED since Dec. 2008)