Re: Calling all stage iv sisters
 

I am going to tally all the Stage IV years....I'll bet the number will be astounding!

Re: Calling all stage iv sisters
 

I have followed this site for my wife and used it to pass on all the good news that I received from it. My wife is a 11.5 year surviver. She was 51 years old when Breast cancer struck her in 1999. After standard treatment the cancer re-appeared one year later in her spine and lungs. Her Doctor then did another pathology test on the breast tissue and determined that she could quilify for a new drug called Herceptin. That drug along with Zometa has kept the cancer at bay or stabilized for 10 years. I know that Herceptin along with lots of prayers and family love as well as using this site to pass on hope has kept her alive to enjoy our 8 grand children, five of them born after her first diagnoises. She is still with us this mothers day and doing fine. She wanted to pass on to all of you that one of the key pieces of advice she gleened from this site was the information to keep using fish oil and COQ10. Two years ago she got a low MUGA score and the doctor was concerned and thouht he would have to stop the Herceptin treatment. After reading one of the posts on this site I told her about the use of fish oil and COQ10 used by some of your members. She took another MUGA test 3 months later and her heart was back up to satisfactory strength and she has not had a problem since. I just wanted all you wonderful fighters out there to know that there is hope and everyday you fight and live is one day closer to the cure. When my wife was first given the bad news there was only Herceptin. Now there are two or three more drugs of choice to fight with. My wife's doctor has said that she will out live him espcially now with all the options he has to go to in the future. God bless you all and all the support you give to all of us and that includes us husbands who use this site also.

From one loving husband.

Re: Calling all stage iv sisters
 

I can't think of a better mother's day greeting... WOW....11.5 years. Such a bucket full of hope. A gift that just can't be beat! Thank you so much for sharing this wonderful tidbit about your wife. How lucky she is to have such a supportive husband and family. Godspeed and continued good health!
Love Kim from CT

Re: Calling all stage iv sisters
 

stage 4 for 4 years

Re: Calling all stage iv sisters
 

Dear ladies.
I can't tell you how much I appreciate this thread. I just joined yesterday. My initial diagnosis and treatment was in 2009 but a nasty recurrence this April has bumped me along the staging scale and I'm very aware of my mortality. Every day is precious and I thank you all so much for reminding me that many more precious and fulfilling days/months/years are possible.
Much love
Angela
Melbourne, Australia

Re: Calling all stage iv sisters
 

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.]

Re: Calling all stage iv sisters
 

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!

Re: Calling all stage iv sisters
 

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!

Re: Calling all stage iv sisters
 

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.

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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....

Re: Calling all stage iv sisters
 

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!

Re: Calling all stage iv sisters
 

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.)

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

[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/ 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.

Re: Calling all stage iv sisters
 

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?