Calling all stage iv sisters

[Mary L]

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]

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]

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/ 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)