Re: Calling all stage iv sisters
 

Not sure if I'm in the right spot. But here is my story. Diagnosed in Aug/2009 with Her2+ Stage 4 breast cancer with mets to the liver. Did 10 months of TCH and now on herceptin only every 3 wks. No surgery was ever offered, 2 years ago was told not a candiate for surgery or for mammograms (was never explained why). Oncologist ordered mammograms & biopsy in Oct/2012 came back as positive. Now offered surgery, after 3 1/2 years, only offered because liver is now clear (no tumors--had 14 tumors) CT scans show all is clear. Has this happened to anyone else. I'm new to this forum. Had a hard time finding some support where I live.

Re: Calling all stage iv sisters
 

To Pamy (?) - I've taken Herceptine on and off for years. sometimes for 1-2 years at a time. Had a reaction only once (after loading dose). Otherwise, no problems with it!!!

Re: Calling all stage iv sisters
 

Hi LauraG, as I have often written to new members, I'm glad you have found this wonderful place of support and information.

It sounds like you are doing very well, and no, I've never heard of anyone being offered surgery after a few years at stage iv - I presume you mean surgery to your original breast tumour. I think that means that your medical teams have some renewed faith in your future. You mention your curiosity about why you weren't a candidate for mammograms or surgery... from my experience I was told 'there wasn't any point' to continue mammograms. However, the longer I stayed stable at stage iv, they reintroduced the mammograms and ultrasounds - 'would hate that you got another primary as you are doing so well', they said. However, when active disease in my liver appeared, no more mammograms or ultrasounds for the time being!

Wishing you all the best Laura.

Cheers Marie

Re: Calling all stage iv sisters
 

Jackie,
You can add me to the Stage IV list as I was diagnosed with mets to uterus last September. Thanks for all your hard work on this, Joanne

Re: Calling all stage iv sisters
 

wow, thank you all so much. These posts really help! Stage IV in Aug. 2012. finished 16 rounds of chemo(taxol). Having ovaries out next month. Trying to decide what to do with the breast mass...two surgeons one suggests lumpectomy, the other mastectomy...Was just told that they want me to stay with Heceptin and perjeta forever...Glad to hear finally there is a forever, tempered by the idea of being "tied" to treatment long term...your comments are a huge help in hearing normal life with BC.

Re: Calling all stage iv sisters
 

Current stats:

Total 142 members* and *701 years (and still counting) as of March 4, 2013
@ - members gleaned from other threads (You can use ‘Search’ or 'Members List' 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 __ 15 years and counting
4angel _______________ August 2012 3 chemos – 2 w/ Herceptin 1 w/ Perjeta 16 Taxol ______ 6 months and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 7 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 9 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 1/2 years and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 2 years and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 11 months and counting
@A. L. Pendley ___________ (1999) 4/2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva _ 7 years 10 months and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __ 17 1/2 years and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 6 years 2 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 10 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 5 years 1 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 10 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 9 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 8months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _Abraxane, H__ 5 years 4 months and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) __Er+Pr+(Her2- May 2003) Dec 2010 lung/nodes, bone ___ XHZ THZ Now HFFZ ___ 2 yrs and 2 months (bone clear)
@Cat _____ Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 5 months and counting
Cathya (Cathy) __ Er+ Pr+ Her2+ (Oct. 2004 3 cm IDC) Jan 2005 superclavicular node 4AC 4T Actonel 9m H 8 yrs 1 month and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 1/2 yrs months and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 8 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 5 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 7 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 5 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years 4 months and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 7 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 8 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 4 yrs 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 9 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 7 years 1 month (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years 4 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 years 4 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __ 3 years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 5 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung __ Herceptin ____ 2 yrs 8 months and counting (NED March 2011~2012)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 9 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 3 years and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 11 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 3 yrs 1 month and counting (NED till 1-2012)
Emy (Eileen) __________ Er+ Her2+ (2001 DCIS r. Mastmy+Tmxfn) 2010 Lung 2011 Liver ______ 2 yrs 9 months and counting
Eva Sophia ________ Her2+ (June 2008 IIb) Nov 2010 Sternum & Spine Cyberknife, T-DM1 Plus __ 2 yrs 3 month and NED (since Nov 2011)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 6 yrs and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 8 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 7 months and counting
@Flutterby ____________ Her2+ 2003 Nerve endings 2006 2010 2012 Lung _________ 9 yrs 7 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 1/2 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 12 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain __T-DM1______ 4 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver _____________ 5 months and "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 10 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 7 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year 4 months and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 10 months and counting
jcepregi ____________________ Nov 2010 _________ weekly chemo – 4th different treatment 2 yrs 3 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 2 years and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 9 months and counting
@jmihay _______________ (1986 double Mastmy)2001Stage IVone round of chemo + Herceptin 12 years GKRS 2009 NED
Joanne S ____________ Er+ Pr+ Her2+ (Aug 2006 III) Sept. 2012 Uterus (Her2-, ILC) _________ 6 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 6 yrs 1 month and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 10 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011 IIB) Nov. 2011 Bones and Liver______________ 1 year 3 months and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 10 yrs 1 month and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 7 yrs 3 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 7 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 8 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver Spine 10 WBR ______________ 1 1/2 year and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 5 months and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 5 yrs and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 11 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 2 years 1 month and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 9 months and counting
KsGal (Jody) _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver Brain WBR Dec 2012_______ 1 year 2 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 5 years and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 10 months and counting
Laura G ________ Aug 2009 Liver 10 month TCH + H now liver clear ready for surgery 3 ½ years and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 7 months and counting (NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 3 years 3 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 6 yrs and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 yrs 4 months and counting (NED till mid 2012)
Mahshadp ('s Mom) __________________________________________________ ____ 10 WBR _____
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 years and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 8 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 7 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 7 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 2 yrs 2 month and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 10 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 1/2 yrs and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 1/2 yrs and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 1/2 yrs and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 7 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 9 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 year 9 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 4 yrs and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain GKRS __________ 7 months and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 11 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years 4 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 9 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 15 years 1 month and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 1 year and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR 2010) __ 10 yrs 5 months and counting
Pamyjean ______________________ (2010 IIIA) Jan 2013 Bone __________________ 2 months and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years 4 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years 5 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 3 yrs and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 11 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 3 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 7 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 3 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 2 yrs 3 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 7 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 3 years 3 months and counting
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year 5 months and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 5 years 3 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P T-DM1 __ 1 year and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 7 yrs 2 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 9 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 11 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver Brain GKRS 2005 ________ 11 yrs 1 month and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 5 months and counting (4 months NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 5 months and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 9 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 7 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 6 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 1/2 years and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 23 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 6 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 15 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 6 years 1 month and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 11 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 11 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 11 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 3 yrs 3 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 3 yrs and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 6 years 1 month and counting (NED since finishing chemo)

Re: Calling all stage iv sisters
 

I would like to update my profile, but can not figure out how...I find this site very difficult to navigate. Could someone please point me in the right direction? I like the way many members have their cancer journey tx changes etc. listed here. I would like to include mine as well.

Re: Calling all stage iv sisters
 

Hi Ann,
If ou mean you want to update your signature...that's a piece of cake.
Just scroll to the top of any page and find the thin purplish stripe.
Find the "Quicklinks" drop down...all the way on the right side.
One of the options that will drop down is 'edit signature'.

From there you should be fine! :)
Good luck!
Denise

Re: Calling all stage iv sisters
 

Thanks! I was thinking of it as my profile, and did not look for signature. I updated it, and will work on the format, then try to attach it to my profile.

Re: Calling all stage iv sisters
 

OK, I updated it, but it seems to not appear anywhere. I like the way many on this site seem to have their hx automatically appear with posts. Sorry I am a bit lame regarding this site. Thanks for your help.

Re: Calling all stage iv sisters
 

Ann,

After you 'edit' your signature, be sure to scroll down and click on 'Save signature'. Also, there's a limit of 1000 (?) characters which includes color codes and anything 'fancy'. That's why most of us use a lot of abbreviations/acronyms ...

Re: Calling all stage iv sisters
 

Thanks Jackie! I will work on it tomorrow. Thanks so much for keeping track of all this!

Re: Calling all stage iv sisters
 

Hello everyone,

My name is Michele and I just found this site! I am not a newby to breast cancer since I've been fighting this dreadful disease for the past 20 months. I stumbled on this site because I was googling the drug herceptin. So a little history before my questions. I was diagnosed with IBC stage IV with bone mets on November 3, 2011. I started FEC mid Novembre and had 4 cycles, then changed my treatment to weekly taxol for 18 weeks as well as herceptin every three weeks after seeking a second opinion. I finished the taxol in June 2012 and had a mastectomy of the right breast and full nodes removal under the arm. I decided not to do the radiation at this time, I chose to go on tamoxifien and continue with the herceptin because my cancer is HER2Neu+++ and hormone +++. In November 2011 my markers were in the 1000 and my tumor markers were about 21. Today everything is very well, no more pain and my markers are back to normal; 30 and tumor markers are 1.8!! YOUPPI! I continue on the herceptin every three weeks, tamoxifen every day and Xjeva injection (donosomab) once a month for the bones. My question to you ladies is how long can you remain on the herceptin if you are NED? If I was stage III, they would stop the herceptin after one year, but for stage IV what is the protocal??? I've spoken to a few oncologist and not one can agree on what to do? Please help me, I'm looking for other ladies in my situation that have been on herceptin for a while!!
Thanks

Re: Calling all stage iv sisters
 

Hi Michelle,

Here's a thread discussing the length of Herceptin treatment:

http://her2support.org/vbulletin/sho...long+herceptin

Re: Calling all stage iv sisters
 

I just recently came across this site and you have no idea how happy it’s made me!!!

I’m 38 years old (39 this June) and was officially dx’d with stage IV, HER2+ bc with mets to the liver and spine at the get go in the beginning of January (I new it was bc in mid-December but had to wait for my Oncologist appointment in January for the official news). I was heartbroken to hear the news! It was one of those moments that I never thought could happen to me, this kind of thing only happens to other people right???? I was a mess and honestly all I could think about was that I was dying. I couldn’t sleep for weeks and when I tried, I woke up almost every hour crying. Why me? What did I do to deserve this? What could I have done to avoid this??

Even though it’s only been just under two months from getting the official diagnoses, my attitude has changed for the better and it keeps getting better every day. I know I will still have my bad days but for the most part, I have “accepted” my disease and have decided to move forward with my life and try to live it to the fullest without regret. I decided I had no desire to live in depression and waste the years I have left, I want to love life and get as much out of it while I can!!!

Even though I know what I have has been labeled as “terminal” and I considered my life over in the beginning, I now prefer to look at this as a chronic disease. Medicine is making new discoveries all the time and my hope is that the longer I hang on and fight, the more options I will have to keep going with a good quality life!!!!

I had a week of radiation for my spine in the beginning and it worked wonders!!!!! I can freely move around again and I’m now at about an 85%-90% comfort level whereas before I was lucky to have a “good day” at 50%-60%. Before radiation, I was in bed most of the time since the pain was just horrible and now I can walk without pain and for the first time in ages, I can actually bend over without having to grab onto something for support just to do something as simple as picking something up off the ground.

I just finished round two of chemo (Tatotere) this past Tuesday along with Herceptin and will be doing this every three weeks for 6-8 treatments (length depends on how my body reacts and the cancer cells respond). I will be on Herceptin for many treatments after my chemo is finished as well as on a pill a day if everything goes well. So far, I have been VERY lucky and have had minimal side effects from the treatments. Other than hair loss, some slight/temporary changes in my taste buds, some water retention and the occasional aches and pains, I have been pretty much side effect free which I think is really helping with my attitude. I know that each treatment can be different and I may not feel this well every time but I will happily take it when I can get it!!

My Oncologist didn’t give me a time frame on how long I have to live (and of course it was the very first question I asked!). She explained to me that it’s different for each person and how their body reacts to the treatments. At first I wasn’t sure if I was happy with her answer. I was torn between wanting to “know” so I could prepare, to not wanting to know so I didn’t stress out about it every moment of the life I have left. Now I am glad that she can’t tell me because it gives me hope of many years to come!

Coming across this site has now given me even more hope and motivation to keep going! To be able to read the stories, updates and progress of other women in the same or similar situation has been amazing. It shows me that no one has an expiry date as so many people (including us) like to think with a disease like this. It also shows that a positive attitude can make such a difference in this journey. To know that so many women have been living well with this for 10+ years has just made my day, thank you!!!!!

Re: Calling all stage iv sisters
 

Current stats:

Total 145 members* and *704 years 6 months (and still counting) as of March 8 , 2013
@ - members gleaned from other threads (You can use ‘Search’ or 'Members List' 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 __ 15 years and counting
4angel _______________ August 2012 3 chemos – 2 w/ Herceptin 1 w/ Perjeta 16 Taxol ______ 6 months and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 7 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 9 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 1/2 years and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 2 years and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 11 months and counting
@A. L. Pendley ___________ (1999) 4/2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva _ 7 years 10 months and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __ 17 1/2 years and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 6 years 2 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 10 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 5 years 1 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 10 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 9 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 8months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _Abraxane, H__ 5 years 4 months and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) __Er+Pr+(Her2- May 2003) Dec 2010 lung/nodes, bone ___ XHZ THZ Now HFFZ ___ 2 yrs and 2 months (bone clear)
@Cat _____ Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 5 months and counting
Cathya (Cathy) __ Er+ Pr+ Her2+ (Oct. 2004 3 cm IDC) Jan 2005 superclavicular node 4AC 4T Actonel 9m H 8 yrs 1 month and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 1/2 yrs months and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 8 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 5 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 7 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 5 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years 4 months and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 7 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 8 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 4 yrs 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 9 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 7 years 1 month (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years 4 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 years 4 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __ 3 years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 5 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung __ Herceptin ____ 2 yrs 8 months and counting (NED March 2011~2012)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 9 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 3 years and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 11 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 3 yrs 1 month and counting (NED till 1-2012)
Emy (Eileen) __________ Er+ Her2+ (2001 DCIS r. Mastmy+Tmxfn) 2010 Lung 2011 Liver ______ 2 yrs 9 months and counting
Eva Sophia ________ Her2+ (June 2008 IIb) Nov 2010 Sternum & Spine Cyberknife, T-DM1 Plus __ 2 yrs 3 month and NED (since Nov 2011)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 6 yrs and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 8 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 7 months and counting
@Flutterby ____________ Her2+ 2003 Nerve endings 2006 2010 2012 Lung _________ 9 yrs 7 months and counting
Forever Fighting ___ Her2+ January 2013 Liver & Spine (radiation) Taxatere Herceptin __ 2 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 1/2 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 12 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain __T-DM1______ 4 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver _____________ 5 months and "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 10 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 7 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year 4 months and NED (since March3, 2012)
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 10 months and counting
jcepregi ____________________ Nov 2010 _________ weekly chemo – 4th different treatment 2 yrs 3 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 2 years and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 9 months and counting
@jmihay _______________ (1986 double Mastmy)2001Stage IVone round of chemo + Herceptin 12 years GKRS 2009 NED
Joanne S ____________ Er+ Pr+ Her2+ (Aug 2006 III) Sept. 2012 Uterus (Her2-, ILC) _________ 6 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 6 yrs 1 month and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 10 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011 IIB) Nov. 2011 Bones and Liver______________ 1 year 3 months and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 10 yrs 1 month and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 7 yrs 3 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 7 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 8 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver Spine 10 WBR ______________ 1 1/2 year and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 5 months and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 5 yrs and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 11 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 2 years 1 month and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 9 months and counting
KsGal (Jody) _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver Brain WBR Dec 2012_______ 1 year 2 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 5 years and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 10 months and counting
Laura G ________ Aug 2009 Liver 10 month TCH + H now liver clear ready for surgery 3 ½ years and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 7 months and counting (NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 3 years 3 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 6 yrs and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 yrs 4 months and counting (NED till mid 2012)
Mahshadp ('s Mom) __________________________________________________ ____ 10 WBR _____
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 years and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 8 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 7 months and counting
Marttalam (Michele) ___ Er+ Her2+ Nov 3, 2011 IBC Bone _ 4 FEC 18 w Taxol Tmxfn + Herceptin + m Xjeva __ 4 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 7 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 2 yrs 2 month and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 10 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 1/2 yrs and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 1/2 yrs and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 1/2 yrs and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 7 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 9 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 year 9 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 4 yrs and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain GKRS __________ 7 months and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 11 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years 4 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 9 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 15 years 1 month and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 1 year and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR 2010) __ 10 yrs 5 months and counting
Pamyjean ______________________ (2010 IIIA) Jan 2013 Bone __________________ 2 months and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years 4 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years 5 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 3 yrs and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 11 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 3 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 7 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 3 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 2 yrs 3 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 7 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 3 years 3 months and counting
Salli (C) ___ Er+ Pr+ Her2+ (Nov 2008) Oct 2010 spine, Zometa 2011 liver lung H+T+ P 3 years and counting (will test if NED in April)
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year 5 months and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 5 years 3 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P T-DM1 __ 1 year and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 7 yrs 2 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 9 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 11 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver Brain GKRS 2005 ________ 11 yrs 1 month and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 5 months and counting (4 months NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 5 months and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 9 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 7 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 6 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 1/2 years and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 23 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 6 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 15 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 6 years 1 month and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 11 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 11 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 11 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 3 yrs 3 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 3 yrs and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 6 years 1 month and counting (NED since finishing chemo)

Re: Calling all stage iv sisters
 

Hi Jackie, please add me to the list of Stage IV sisters. I'll try to put this in a format that's easily understood.

Salli C....2008 HER2+ ER+PR+......Arimidex 2 years....2010 Stage IV mets to spine, Zometa 1 year, 2011, Stage IV mets to liver, lung and spine. Now on Herceptin, Taxol, Perjeta. Do not know yet whether I'm NED. Test in 1 month. Surviving 3 yrs with Stage IV mets.

Re: Calling all stage iv sisters
 

Current stats:

Total 144 members* and *767 years 8 months (and still counting) as of April 29 , 2013
@ - members gleaned from other threads (You can use ‘Search’ or 'Members List' to locate their postings)
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~2013), 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 almost 10 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 triumphs 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 __ 15 years and counting
4angel _______ Er+ Her2+ Liver August 2012 3 chemos – 2 w/ Herceptin 1 w/ Perjeta 16 Taxol ______ 8 months and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 9 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 11 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 8 months and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 2 years 2 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 1 year 1 month and counting
@A. L. Pendley ___________ (1999) 4/2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva _ 9 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __ 17 years 8 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 6 years 4 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 2 years and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 5 years 3 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 10 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 11 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 10 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _Abraxane, H__ 5 1/2 years and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 13 years and counting
@Caroline96 (Maria) __Er+Pr+(Her2- May 2003) Dec 2010 lung/nodes, bone ___ XHZ THZ Now HFFZ ___ 2 yrs 4 months and counting (bone clear)
@Cat _____ Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb; colon; kidney -> Kadcyla 4 yrs 7 months and counting
Cathya (Cathy) __ Er+ Pr+ Her2+ (Oct. 2004 3 cm IDC) Jan 2005 superclavicular node 4AC 4T Actonel 9m H 8 yrs 3 months and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs 8 months and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 10 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 7 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 9 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 1/2 years months and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 9 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 11 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 4 yrs 2 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 11 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 7 years 3 months
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 1/2 years and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 1/2 years and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __ 3 years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 7 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 13 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung __ Herceptin ____ 2 yrs 10 months and counting (NED March 2011~2012)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 11 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 2 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 11 years and counting
Emy (Eileen) __________ Er+ Her2+ (2001 DCIS r. Mastmy+Tmxfn) 2010 Lung 2011 Liver ______ 3 yrs and counting
Eva Sophia ________ Her2+ (June 2008 IIb) Nov 2010 Sternum & Spine Cyberknife, T-DM1 Plus __ 2 yrs 5 months and NED (since Nov 2011)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 6 yrs 2 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 10 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 9 months and counting
@Flutterby ____________ Her2+ 2003 Nerve endings 2006 2010 2012 Lung _________ 9 yrs 9 months and counting
Forever Fighting ___ Her2+ January 2013 Liver & Spine (radiation) Taxatere Herceptin __ 3 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 yrs 8 months and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 12 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain __T-DM1______ 4 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver _____________ 7 months and "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 2 years and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 9 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 1/2 years and NED (March3, 2012)
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 2 years and counting
jcepregi ____________________ Nov 2010 _________ weekly chemo – 4th different treatment 2 yrs 5 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 2 years 2 months and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 11 months and counting
@jmihay _______________ (1986 double Mastmy) 2001Stage IV one round of chemo + Herceptin 12 years GKRS 2009 NED
Joanne S ____________ Er+ Pr+ Her2+ (Aug 2006 III) Sept. 2012 Uterus (Her2-, ILC) _________ 7 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 6 yrs 3 months and counting
Joan S. ______________________ April 2007 ________________________________ 6yrs and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011 IIB) Nov. 2011 Bones and Liver______________ 1 year 5 months and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 10 yrs 3 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 7 yrs 5 months and counting
@KayeR ______ Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 9 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1 Perjeta __________ 2 yrs 10 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver Spine 10 WBR ______________ 1 year 8 months and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 7 months and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (1 yr) ______ 5 yrs 2 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 9 years 1 month and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 2 years 3 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 11 months and counting
KsGal (Jody) _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver Brain WBR Dec 2012_______ 1 year 4 months and counting
kstrahm _________________ Er+ Pr+ Her2+ (April 2006) Liver ___________________ 7 years and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 5 years 2 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 4 years and counting
Laura G ________ Aug 2009 Liver 10 month TCH + H now liver clear ready for surgery 3 years 8 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 9 months and counting (NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 3 years 5 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 6 yrs 2 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 1/2 yrs and counting (NED till mid 2012)
Mahshadp ('s Mom) ________________________ 2013 Brain _______ 10 WBR 4 months and still counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 9 years and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 10 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 9 months and counting
Marttalam (Michele) ___ Er+ Her2+ Nov 3, 2011 IBC Bone _ 4 FEC 18 w Taxol Tmxfn + Herceptin + m Xjeva __ 5 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 9 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 2 yrs 4 month and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 5 years (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 8 months and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 8 months and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 8 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 9 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 2 years and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 4 yrs 2 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011 IIIC) Jul 23, 2012 Brain GKRS __________ 9 months and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 2 years 1 month and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 1/2 years and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 11 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 15 years 3 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 1 year 2 months and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR 2010) __ 10 yrs 7 months and counting
Pamyjean ______________________ (2010 IIIA) Jan 2013 Bone __________________ 3 months and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 1/2 years and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years 7 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 3 yrs 2 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 7 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 2 year 1 month and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 3 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 7 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 3 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 2 yrs 5 months and counting
Ricky (‘s wife Marsha) _____________________ 2006 Liver ___________________________ 7 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 3 years 5 months and counting
Salli (C) ___ Er+ Pr+ Her2+ (Nov 2008) Oct 2010 spine, Zometa 2011 liver lung H+T+ P 3 1/2 years and counting (will test if NED in April)
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year 7 months and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 5 years 5 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P T-DM1 __ 1 year 2 months and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 11 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 7 yrs 4 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 11 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 6 yrs 1 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver Brain GKRS 2005 ________ 11 yrs 3 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 7 months and counting (4 months NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 7 months and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 9 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 9 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 6 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 8 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 23 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 6 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 15 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 6 years 3 months and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 2 year 1 month and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 2 year 1 month and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 2 years 1 month and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 3 yrs 5 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 1 yr 5 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 6 years 3 months and counting (NED since finishing chemo

Re: Calling all stage iv sisters
 

Just wanted to share good news! Pathology from my mastectomy came back clear of any cancer. The chemo worked! Surgeon is very hopeful that if as large a breast mass as I had was killed completely that the small spots still on my liver may also be scar tissue...though they won't give me the all clear yet, they are very positive. A huge change from fall when they would not even talk about future!
FYI Stage 4, large breast mass- her2+, er+, many liver spots...feeling thankful! currently healing and starting reconstruction, still on Herceptine and perjeta and zometa every third week and orally an estrogen reducer...

Re: Calling all stage iv sisters
 

4angel - wonderful! Thank You, Lord!