Re: Calling all stage iv sisters
 

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_____________ 7 year 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 6 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________3 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 2 months and counting (NED)
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 5 yrs 7 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 6 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 9 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 2 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 3 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 ½ years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 2 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 5 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 6 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 5 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _1 yr 11 months and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 5 yrs 11 months and counting
Jenan _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 3 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________6 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 6 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 4 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 6 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 8 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 1 month and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 9 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)________ 3 yrs 5 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 6 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 2 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 6 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year and counting (4 months NED)
Linda b ___________________________ Er+ Her2+ Jan. 2007 Lower back & Neck ________________4 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 7 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 8 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 4 yrs 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________2 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 5 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 2 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 8 yrs 10 months and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 10 months and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011Vertebrae, Liver ____________________ 4 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 7 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________7 yrs 10 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 7 months and counting
SoCalGal _____________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain ________________4 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 6 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 4 months and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 4 yrs 11 months 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 7 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 6 months and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 4 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 4 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 2 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs and counting (NED)

Total 71 members* and 309* years 5 months as of August 8, 2011
@ - members gleaned from other threads

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."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

Re: Calling all stage iv sisters
 

Diagnosed April 2007 initially with Stage 4. It's been a battle but I have seen my daughter get married and have my first Grandchild! I am living a very full and happy life!

Re: Calling all stage iv sisters
 

Diagnosed February 2009 with stage 4. Doing well so far and quality of life is still great. original dx was march 2006.

Dawn

Re: Calling all stage iv sisters
 

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_____________ 7 year 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 6 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________3 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 2 months and counting (NED)
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 5 yrs 7 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 6 yrs 10 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 9 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 2 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 3 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 6 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 9 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 9 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 ½ years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 1 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 2 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 5 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 6 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 5 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _1 yr 11 months and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 3 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 5 yrs 11 months and counting
Jenan _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 3 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________6 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 6 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 4 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 6 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 8 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 1 month and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 9 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)________ 3 yrs 5 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 6 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 2 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 6 months and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year and counting (4 months NED)
Linda b ___________________________ Er+ Her2+ Jan. 2007 Lower back & Neck ________________4 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 7 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 8 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 4 yrs 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________2 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 5 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 2 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 8 yrs 10 months and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 9 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 10 months and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011Vertebrae, Liver ____________________ 4 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 7 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________7 yrs 10 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 7 months and counting
SoCalGal _____________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain ________________4 yrs 4 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 6 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________3 yrs 10 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 4 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 4 yrs 11 months 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 7 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 6 months and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 4 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 4 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 2 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs and counting (NED)

Total 73 members* and 316* years 1 months as of August 11, 2011
@ - members gleaned from other threads

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."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

Re: Calling all stage iv sisters
 

Wow what a list. I'm another stage iv. It's really interesting when you put it like this. Thanks for all your hard work.

Thanks Jacqui

Re: Calling all stage iv sisters
 

just wanted to say i am 9 years stage4 and ned. herceptin is a wonder drug. " where there is life there is hope"

Re: Calling all stage iv sisters
 

what does NED stand for?
After your original chemo treatment....what happens? Many of you have posted you have been on herceptain for years. Do you continue to take chemo drugs? Curious. My Mom was just diagnosed 2 weeks ago with Stage 4 her2+. Bone mets and 2 spots on liver. She had her first treatment yesterday. 2 chemo drugs IV + herceptain.

Re: Calling all stage iv sisters
 

KG, NED is the Holy Grail as it stands for No Evidence of Disease-what we all aspire to. Unfortunately I and many others still have to take chemo drugs but some lucky folk are stable on Herceptin, Tykerb or a combination, some on anti hormonals and some blessed folk like Steph N and AndiBB are on no cancer drugs. Or to quote Steph N they are on a wing and a prayer.
May NED be your future,
Trish

Re: Calling all stage iv sisters
 

@KG1993--I just want you to know that what it says on this site about liver metastasis may be out of date, or it may only apply to massive metastasis that has progressed to the point of liver failure. I have a few small lesions on my liver. They are now much smaller than when they were found in April. So don't let what this board says about it freak you out.

Re: Calling all stage iv sisters
 

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 2 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 4 months and counting
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 4 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 3 yrs 11 months and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 3 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 4 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 7 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 11 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 __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 3 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 7 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 8 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 7 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 2 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 1 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 ______________________ 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 1 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________7 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) ____________________ 5 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________7 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 8 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 5 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 8 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 10 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 3 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 weeks
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 7 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________7 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 4 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 8 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ (Feb 2008) Aug 2011 Lung _______________________ 3 weeks and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 2 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 11 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_______ 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 2 months and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs 2 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 9 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 1 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 4 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 7 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 4 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 ½ yrs (NED)
Phil (‘s wife) ___________________________________________2006 _____________________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 6 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 9 months and counting (NED since 4-16-2008)
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 9 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 6 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 8 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 6 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 1 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 9 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 8 months and countin
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 6 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 6 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 3 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 2 months and counting (NED)

Total 84 members* and 361 * years 4 months as of Oct 1, 2011
@ - members gleaned from other threads

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."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

Re: Calling all stage iv sisters
 

I'll add myself to the list here - Stage 4 since June 2011 - mets to lungs, skin and axilla node.
This thread gives me hope on days like today when I am battling a temp (struggle with my neutrophil counts on this treatment) to know that it will be worth it. I feel great most of the time. I spent all day yesterday gardening and most of the time still feel pretty good apart from fatigue from the treatment and the odd issue with treatment side effects.
The wonderful sisters on here inspire me daily.

Re: Calling all stage iv sisters
 

Stage 4 since Feb 2007 - almost 5 years!

Re: Calling all stage iv sisters
 

Stage 4 since Jan 08, only on second chemo, expect to see my 9 and 15 year old daughters into adlthood!

Re: Calling all stage iv sisters
 

Thank you all for your reply's, i had a bad day saturday wondering if this chemo will work or not.. I got baptized at church yesterday along with my twin sister and i just have to believe that i will be ok.. Thank you all again and the best of luck to you all... Jeana

Re: Calling all stage iv sisters
 

I am not very adept at this site, but if you search TDM-1 you will find a post of very easy petition to sign attempting to get the FDA to allow access to this fabulous drug for us stage 4 people. I think we all need to sign= it is the best hope out there of NED with minimal side effects! Phil has been amazoing at doing the legwork to get this FDA to wake up and allow access! Than-you Phil!

Re: Calling all stage iv sisters
 

Thank you all!
Your hope-filled stories were exactly what I needed!!
I had a particularly discouraging series of appointments with my various doctors today. They seemed to think that I should be very encouraged by the statistics they quoted: "your chances of 5 year survival are 50/50" ". That won't even get my boys out of high school! What about seeing them married? I want to be a grandmom!
All the joy was sucked out of me. I felt like I'd been hit by a ton of bricks. All this chemo, surgery, radiation...for a 50% chance at surviving 5 years?! I cried all the way home. My husband was pretty shaken up too.

Then, we got home...I logged in here...and my HER2 sisters gave me hope again!! So many success stories! 3 years, 5, 10 years! So much joy!!

And, Tricia K, when I read about you and your beautiful grand, and great-grandchildren...I cried again, but for a MUCH HAPPIER reason!! You are amazing!! Thank you, Thank you!!

I'll remember you all in prayer!
Stay strong!
Denise

Re: Calling all stage iv sisters
 

Hi Lil Sis,

God is good all the timek! Great Attitude! Please know you and your family are in my Prayers also!

Re: Calling all stage iv sisters
 

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 2 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 4 months and counting
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 4 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 3 yrs 11 months and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 3 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 4 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 7 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 11 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 __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 3 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 7 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 8 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 7 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 2 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 1 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 ______________________ 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 1 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________7 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 5 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________7 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 8 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 5 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 8 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 10 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 3 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 weeks
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 7 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________7 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 4 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 8 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ (Feb 2008) Aug 2011 Lung _______________________ 3 weeks and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 2 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 11 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_______ 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 2 months and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs 2 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 9 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 1 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 4 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 7 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 4 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 ½ yrs (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 6 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 9 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 and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 9 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 6 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 8 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 6 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 1 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 9 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 8 months and countin
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 6 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 6 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 3 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 2 months and counting (NED)

Total 85 members* and 370 * years 4 months as of Oct 10, 2011
@ - members gleaned from other threads

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."

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.

Calling all stage iv sisters
 

Well, isn't this the most marvelous post!!!! Add my name, please. Jean you rock, as always!

Andi BB '95 Stage 4 invasive lobular carcinoma (L breast -- 9 cm tumor) + 2 lymph nodes out of 21. ER/PR-. Mastectomy and tram flap reconstruction, Adria x 4, CMF 8 mnths. No one was talking HER2 back then.

'98 metastasized throughout liver. HER2+. Herceptin in clinical trials and unavailable. FDA fast-tracked H and it became available September 28, 1998. (I'd been dx in Aug.) 8 mnths Taxotere, Herceptin added in Nov of '98. Took it for 10 Years. Now 3 yrs FREE. Free of H, free of canser. Feeling great!

Take a gegillion supplements (per NY onc who specializes in this -- including necessary dosages -- ev single day AM & PM since '98) -- MOST important during chemo, to boost your immune system and energy level, keep heart strong, fight off free radicals and way more -- despite other 4 oncs who I love but can't help being mainstream conservative and frankly know little about supplements. They worried the supplements would adversely impact the efficacy of the chemo. I listened to my gut and decided to be extraordinarily brave and trust my instincts. I took the supplements. All of them.

'99 officially considered in cautious remission. It was decided by 2 out of 3 independent radiologists that the spots they see in CTs are not tumors but the dead remains of tumors, necrosis. I remain stable to this day. 12 yrs stable and thriving.

You too can be a miracle, defy the odds, trample on the stats and passionately work at remaining full of the Energy that is composed of: Love, Joy, Kindness, Caring, Thoughtfulness, Forgiveness, Humor and much Laughter, Gratitude (for your many blessings) and Awe. Hug every one, and do it for a few seconds longer than you normally would.

Stand clear of all: anger, resentment, blame, remorse, sorrow, FEAR, worries and uncertainty.

SEE yourself vividly far far into the future. Feel it! KNOW IT! OWN IT! Use the power of the energy of your thoughts positively!

Yes, I know this is a really really really tallllll order -- but YOU CAN DO IT. BELIEVE!

If one person has survived your kind of canser, SO CAN *YOU*!

Sending loving, healing energy to all my Sisters... You are radiant Souls, with a mind and body. Connect with your Spirit. Listen to your Inner Voice, not the voice in your head.

Focus all your energy on healing. And take good care of you.

Omega 3 is essential for so many things -- bc, joint pain, arm and leg pain. Read RB's posts on this, please!!

Re: Calling all stage iv sisters
 

Hi Andy
Really interesting about you taking a supplement for all these years! Some ppl believe that as we live in an eco system we have the cure already but don't know what it is yet! Wonder if some micro-nutrients in your supplement helped to keep you cancer free?
Ellie