Calling all stage iv sisters

[alexandra1]

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]

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/ 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)