Re: Calling all stage iv sisters
 

Thanks for these stories Jackie - I can relate!

Re: Calling all stage iv sisters
 

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!

Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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/ 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)

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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.

Re: Calling all stage iv sisters
 

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

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

Re: Calling all stage iv sisters
 

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!

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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!!!!!!!!!!!!!!!

Re: Calling all stage iv sisters
 

Re: Calling all stage iv sisters
 

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....

Re: Calling all stage iv sisters
 

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

Re: Calling all stage iv sisters
 

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