Calling all stage iv sisters

[Jackie07]

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/ 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)