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09-18-2012, 10:39 AM
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#241
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
Current stats:
Total 134 members* and 663* years 9 months (and still counting) as of Oct. 22, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads
[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."
Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)
@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 3 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 5 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 2 months and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 10 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 3 years 3 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva ___ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 3 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 10 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 4 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 5 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 4 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 years and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@Cat _____Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 1 months and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 1 month and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 3 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 3 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 3 yrs 8 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane wkly - 16 wks Herceptin every 3rd wk (Sept 26 NED) 1 year 5 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 9 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 year 7 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/ 3years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 11 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung ______ 2 yrs 4 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 8 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 2 yrs 9 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 8 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 4 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 3 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 yrs 2 months and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver ________________________ "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 6 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 4 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 6 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 1 year 8 months and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 5 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 9 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 6 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver______________ 1 year and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 9 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 11 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 3 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 4 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 2 months and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 1 month and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 8 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 7 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 5 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 9 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver __________________ 10 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 8 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 6 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 11 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 years and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 3 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 3 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 10 months and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 6 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 2 months and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 2 months and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 2 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 3 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 5 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 5 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 8 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 3 months and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 7 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 5 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 9 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)__ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 4 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P 8 months and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 8 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 9 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 1 month and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 1 month and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 2 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 5 yrs 9 months and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 7 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 7 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 7 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 2 yrs 11 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 8 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 9 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 3 months and counting (NED since Dec. 2008)
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 11-14-2012 at 11:59 AM..
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11-14-2012, 05:45 AM
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#242
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Calling all stage iv sisters
Wanted to bump this up for any new stage 4 members, and also wanted to update that I got the results of my pet scan yesterday and still NED. 21 months !
The best part always is telling my 10 year old daughter. She is always so excited every time I tell her the cancer is still gone.
Laurie
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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11-14-2012, 11:39 AM
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#243
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Senior Member
Join Date: Sep 2012
Posts: 29
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Re: Calling all stage iv sisters
I've been stage IV since 2009 with bone mets and am doing fine. Currently on Xeloda and Tykerb and all is well. I have two pre-teens and plan to be around to raise them. Prayers to all my stage iv sisters.
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11-20-2012, 11:37 PM
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#244
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
Current stats:
Total 134 members* and 664* years (and still counting) as of Nov. 22, 2012
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads
[Introduced to one of our new members this thread which Jean had started in January [2011]. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters , for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."
Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)
@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 years 3 months and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 5 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 2 months and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 10 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 3 years 3 months and counting
@A. L. Pendley ___________ (1999) 2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva ___ 8 years and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 3 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 5 years 10 months and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 6 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 4 years 9 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 5 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 4 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________4 years and NED (7-2012)
@Calisa71 ______ Er+ Pr+ Her2+(1998) axilla nodes/bones 2000 _GKRS _ Irinotecan, Tykerb, H, Xgeva _ 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@Cat _____Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 1 months and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 4 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 1 month and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 3 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 1 month and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 3 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________1 year 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _______ 3 yrs 8 months and counting
Dawny _________Er- Pr- Her2+ (May 2011) lung nodes chest + neck Abraxane wkly - 16 wks Herceptin every 3rd wk (Sept 26 NED) 1 year 5 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 6 years 9 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 year 7 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __1 2/ 3years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 11 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung ______ 2 yrs 4 months and counting (NED March 2011)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 5 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 8 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 2 yrs 9 months and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ________ 2 yrs and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 8 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 4 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 3 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 yrs 2 months and counting
@Flutterby ____________ Her2+ (2003) 2006 2010 2012 Lung __________________ 9 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _____________ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver ________________________ "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 6 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 years 4 months and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 6 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 1 year 8 months and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 5 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 5 yrs 9 months and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 6 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver______________ 1 year and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 9 months and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 11 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 yr 3 months and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 4 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 2 months and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 1 month and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 8 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 7 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 1 year 9 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 5 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 1 year 9 months and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver __________________ 10 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 8 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 6 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 years 2 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 11 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 years and counting (NED till mid 2012)
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 8 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 1 yr 4 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 yrs 3 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 3 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 10 months and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 6 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 2 months and counting
@MJsHusband (MJ) ____ IBC Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 2 months and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 2 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 year 3 months and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 5 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 yr 8 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 8 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 3 months and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 7 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 5 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 14 yrs 9 months and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 8 yrs and counting
Pam P_________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR) Liver ablation _ 10 yrs and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 7 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 6 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 4 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 1 year 10 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 2 years 10 months and counting
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 4 years 10 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P 8 months and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _________ Er- Pr- Her2+ (Feb 2002) Sept 2003 Neck nodes _______ T-DM1(3) _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 8 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 9 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 1 month and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 1 month and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 year 2 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 2 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 5 yrs 9 months and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 7 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 7 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 7 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 2 yrs 11 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 8 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 9 months and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 yrs 3 months and counting (NED since Dec. 2008)
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 01-04-2013 at 10:46 AM..
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11-21-2012, 03:13 AM
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#245
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Senior Member
Join Date: Oct 2011
Location: Geelong, Australia
Posts: 250
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Re: Calling all stage iv sisters
Thank you Jackie, for keeping track of all of this! It is great to read, thanks for all of your hard work!
Dawn
__________________
Dx May 27 2011, age 43
Stage 1V 3.6cm breast lump, spot on lungs, nodes chest + neck
HER2+ ER/PR-
Abraxane weekly - 16 weeks
Herceptin every third week
September 26 2011 N.E.D!
Herceptin ongoing
8th Dec 2011 Brain MRI - clear
20th Dec 2011 bone/cat scan clear still NED
April 2012 scans show axillary node lump - ? what to do...
June 2012 Axillary node dissection 1/11 nodes affected, a wide local excision shows DCIS. Now what to do again? Watch and scan 3 monthly
April 2013, two spots in nodes to chest wall, start TDM1 (Kadcycla) as part of clinical trial
July 2013 stable
Oct 2013 progression off TDM-1 (Kadcycla)
Nov 2013 radiation to lymph nodes in sternum
Dec 2013. Mastectomy right side, pathology shows tumour was HER-2 negative, no wonder TDM-1 (Kadcycla) didn’t work!
April 2014 NED. On Herceptin only
August 2014 NED. On Herceptin only
March 2015. NED. On Herceptin only
September 2015 NED on Herceptin only
March 2016. Pulmonary embolism, Clexane injections daily forever. Still NED On Herceptin only
Nov 2016. Bone Mets in ribs - Radiation. Don’t know if bone Mets are er-/pr-/HER2+ or triple negative.
Can’t give self injections on to tablets (Xarelto) for blood clots.
2017 NED - On Herceptin only
2018 NED - On Herceptin only
2019 NED - On Herceptin only
2020 NED - On Herceptin only
2021 NED - On Herceptin only
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01-06-2013, 01:43 PM
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#246
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Junior Member
Join Date: Jan 2013
Location: Glenside, PA
Posts: 3
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Re: Calling all stage iv sisters
I was diagnosed with Stage IV @ 34 years old. I just passed my 26 month mark. I've been doing weekly chemo for almost 2 years now, 4th different treatment. I go in this week for my PET/CT scan and am nervous. Although reading all of your posts make me really hopeful! THANK YOU!! Good luck, God Bless, and much love and light to you all.
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01-09-2013, 05:35 AM
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#247
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Calling all stage iv sisters
Hi Jcepregi! I just happened across your post here. I'm glad you found us here as it is indeed a wonderful place to share and gain support and advice.
Perhaps you might like to introduce yourself on the Newcomers/Welcome section of the forum, as perhaps others may not have noticed that you have found us.
Best wishes for your PET/CT - so many of us know how worrying a time this can be. Let us know how you go.....
Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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01-09-2013, 06:25 PM
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#248
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: Calling all stage iv sisters
Current stats:
Total 135 members* and 665* years 11 months (and still counting) as of January 9, 2013
@ - members gleaned from other threads (You can use ‘Search’ to locate their postings)
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads
[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...
Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.
Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]
From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."
Name _____ Er Pr Her2 (Initial Diag) Stage IV Diagnosis ___ Clinical Trial __ Triumph years since StageIV ___ (NED = No Evidence of Disease)
@11yrs5xsr5r (Laurie) __ 1998 Pancreas Peritoneal Lung __ Navel/H, T-DM1, Ixempra, Eribulin __ 14 years and counting
Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung _______T-DM1 ___________ 9 1/2 years and counting
Ahoff (Ann) ________________________ IBC May 2010 __________________________________ 2 year 8 months and counting
Alex1 ___________ Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _____________ 1 year 5 months and counting
Alexandra1('s wife) ___ (stage 3 Dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin __ 1 year 11 months and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver ______________________________ 10 months and counting
@A. L. Pendley ___________ (1999) 4/2004 lungs, bone, lymph, 2012 Brain _ H, Ty, X, Xgeva _ 7 years 9 months and counting
AndiBB _____ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver _ Herceptin 10 yrs __17 years 6 months and counting (NED 1999~)
@ Angela ( - NC) ____ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) ___ 6 years 1 month and counting
Angela R _____________________________ (2009) April 2011 ____________________________ 1 year 9 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 ________ 5 years month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ______________________ 10 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________ 8 years 8 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin_______________ 3 years 7 months and counting
Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _________ 5 years 3 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 1 month (bone clear)
@Cat _____Er- Pr- Her2+ (3/2006 III) Sept 2008 Sternal nodes Feb 2012 Colon Abrxn, Trstzm, Tykrb 2 yrs 4 months and counting
@cdbernal (Charlyn) ______________ Aug? 2006 Liver ___________________________________ 6 yrs 5 months and counting
Ceesun (Cathy) __________________ June 2006 Lung ___________________________________ 6 yrs 7 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone _________________________ 3 yrs 4 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 1 year 6 months and counting
Chrisy ______________ Er- Pr- Her2+ (June2002) Sept. 2004 Liver ______T-DM1_____________ 8 yrs 4 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _____________ 7 years 3 months and counting
Conomyself (Rachael) _ Er+ Pr- Her2+ July 2012 Liver, lungs, spine _ Taxotere/Herceptin/Perjeta _ 6 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) _______ 3 yrs 11 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 8 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR 2008 and 2009 GKRS ___ 7 years (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ________________________ 8 years 3 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ________________________ 2 years 3 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial __ 2 years and counting
@Dearjilly _____________ Er+ Pr- Her2+ (Nov. 2011) Sept. 2012 Brain ____ 4 AC 4 TH _______ 4 months and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 12 yrs and counting
DianaMK _________________________(Dec 2006) June 2010 Skin Lung __ Herceptin ____ 2 yrs 7 months and counting (NED March 2011~2012)
@Dianedack______ Er+Pr+ Oct 2001 2 nodes May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 8 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung __________ 2 years 11 months and counting
elcalabrese (Eleanor) _______________________ 2002 Stage IV ___________ Herceptin ______ 10 years and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _________ 3 yrs and counting (NED till 1-2012)
Emy (Eileen) __________ Er+ Her2+ (2001 DCIS r. Mastmy+Tmxfn) 2010 Lung 2011 Liver ______ 2 yrs 8 months and counting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _______________ 5 yrs 11 months and counting
@fentonlady ____________________________ June 2004 Liver __ Herceptin ______ 8 years 7 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _______ 4 yrs 6 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ___UW peptide trial __ 6 yrs 5 months and counting
@Flutterby ____________ Her2+ 2003 Nerve endings 2006 2010 2012 Lung _________ 9 1/2 yrs and counting
@Georgia Girl (Beth) ______________________ Herceptin, Tykerb, Halaven ________ 11 years and counting
@Gracepang ________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain __T-DM1______ 3 yrs and counting
Hongdo _________________ Her2+ (Sept. 2012) Liver _____________4 months and "Will get through the long journey"
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _________ 1 year 9 months and counting
jamlisaann (Lisa) ________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb ___ 6 1/2 years and (NED)
Jacqueline1102 (Jackie) ____ IBC Oct 2011 Liver _____ Perjeta and Herceptin ____________ 1 year 3 months and counting
Jeana _______________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung ___ 1 year 9 months and counting
jcepregi ____________________ Nov 2010 _________ weekly chemo – 4th different treatment 2 yrs 2 months and counting
jkdowl ________________ Er- Pr- Her2+ (Dec 2010 III) Feb 2011 Spine __ 1 year 11 months and counting (NED since Oct 2011)
@jml (Jessica) ____ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years 8 months and counting
Joan M _______ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) ___________ 6 yrs and counting
Joan S. ______________________ April 2007 ________________________________ 5 yrs 9 months and counting
@KaiM ____ Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver______________ 1 year 2 months and NED (Aug. 2012)
Kathy T ______ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 10 yrs and counting
Kavy _______________ (April 2005) Nov. 2005 Lung Liver ______________________ 7 yrs 2 months and counting
@KayeR _______Er+ Her2+ Jan. 2000 (Stage II) July 2011 Lungs Tamoxifen, Zoladex and H _______ 1 1/2 yrs and counting
KDR(Karen) ___ Er- Pr+ Her2+ June 2010 Liver _________T-DM1________________ 2 yrs 7 months and NED
KG1993 (Kim for her Mom) _Her2+ Aug 2011 Bone Liver ________________________ 1 year 5 months and counting
Kim in CA _____ Er+ Her2+ (Feb 1997) Sept 2001 Liver ___ UW Vaccine _11 yrs 4 months and counting (6 yrs NED)
Kim in DC __ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum ___ T-DM1 (2 yrs) ______ 4 yrs 11 months and counting
kk1 ____________ Er+Pr+ Her2 _ March 2004 spots on liver ____________________ 8 years 10 months and counting (NED 2009~)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones __________ 2 years and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _____________ 1 year 8 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _______________ 2 years and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver Brain _____________ 1 year 1 month and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ______________ 4 years 11 months and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung __________ 3 years 9 months and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) _ U of W vaccine _ 2 1/2 years and counting (NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 3 years 2 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ___ 5 yrs 11 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ___TDM1 _______ 5 yrs 3 months and counting (NED till mid 2012)
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 7 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ____________ 11 1/2 yrs and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin ___________8 yrs 3 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 2 yrs 1 month and counting
@Midwest Alice ____ ER- PR- Her2+ IBC April 2008 Spine ______ Enalaprial for heart ____ 4 years 9 months (NED since 2009)
@MikeF (‘s wife Barb)_____ ER- PR- Her-2 + Aug. 2010 Spine, skin _____ TDM1 ____ 2 yrs 5 months and counting
@MJsHusband (MJ) ____ Er- Pr- Her2+ Aug 3 2010 Liver 2012 Hysterectomy due to mets 2 yrs 5 months and NED
Missyw ______________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _______________ 6 yrs 5 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _ 1 1/2 years and counting
@MommieJamieof2 __ Er+ Pr+ Her2+ (May 2012) bone, lung ___ MO27782 (VELVET) _ 8 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ___________ 1 year 8 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 __________________ 3 yrs 11 months and counting (NED till mid 2012)
NEDenise ___________ Er- Pr- Her2+ (Feb 3, 2011) Jul 23, 2012 Brain ____________ 1/2 year and counting
Ninjalyn ___________ March 2011 lungs and chest wall Navelbine/Herceptin/Arimidex 1 year 10 months and counting
No More Tears ____________________ Oct 2010 Spine Chemo Herceptin Zometa _______ 2 years 3 months and counting NED
Nsebesta ________________ (2001) May 2004 Liver ____________ 8 yrs 8 months and counting (NED since 2005)
PAFB _________________ (Jan. 1997) Jan 1998 Metastasis _ Herceptin 12 1/2 yrs till 4/2011 _ 15 years and counting
@Pamelamary (Pam) ___________ Er+ Her2+ (2004) Feb 2012 Spine, pelvis, ribs ___ Marianne ___ 11 months and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)__ 10 yrs 4 months and counting
PatE _______________________________________ Oct 2007 Liver spine _________ 2005 5 years 3 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver _ 2 years 4 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes _ 2 yrs 9 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________ 6 years and counting
pibikay (Hema) _______ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________ 1 year 10 months and counting
pmoore (Pia) _________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ __ Herceptin ___ 2 years and counting
pwiswell _________________________ (2003) 2006 2009 Bone ____________________ 4 years and counting
Radiant (Kim) _____________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes ____ 2 years and counting
@Redwolf8812 (Penny) _____ Er- Pr- Her2+ (July III) Nov 2010 Skin _Parp inhibitor ___ 2 yrs 2 months and counting
Ricky (‘s wife) _____________________ 2006 Liver ___________________________ 5 1/2 years and counting (3 + years NED)
Rolepaul (‘s wife) __________ (1980’s) 11/2009 Brain (Leptomeningeal), spine ______ 3 years 2 months and counting
Sandra Digilio ______________ (Dec 2009) Sept. 2011 3 spots in bone ___________ 1 year 4 months and counting
Schoolteacher (Amelia) _____ Nov 28. 2007 L4 ____________ WBR ______________ 5 years 2 months and counting (NED 4-16-2008 ~ May 2012)
@Sdgirl ____________________(Feb 2012) brain, leptomenginal , liver, lungs and bone H N T P T-DM1 __ 11 months and counting
@Shaysmom (Kelly) ____________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sherryg683 __________________ Dec 2005 Lungs ___________________________ 6 yrs 9 months and counting
@Sixpack __________ Er- Her2+ (Jan 2012 Stage III) Liver ____ TH + FEC + Tykerb/Xeloda 8 months and counting
SoCalGal (Flori) ______________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 6 months and counting
StephN _________________ (Sept 2000) Jan 2002 Liver _____________________ 10 yrs 9 months and counting (NED since 2005)
Survivor2be (Andrea) _______ triple – (Sept 2010) 9/2011 Her2+ brain ___________ 1 year 4 months and counting (4 months NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________ 5yrs 4 months and NED (1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _____________ 8 yrs and counting
teresalynn ____________________________ July 2011 Liver TCH + Femera + Afinitor ____________1 1/2 years and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far _________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver _______________ Halaven __ 6 years 5 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _______________ 22 years and counting
Turbo ________________________________ Lung 2007 ________ Herceptin only ___ 5 yrs (NED)
@Udith7 (Judith) _______________ 1998 Liver _________________ Herceptin _____ 14 years and counting
Unregistered _____________________ Jan. 2007 _____________________________ 6 years and counting
Unregistered (8-25-2011 #106) ____________________________________________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ______________ 1 year 10 months and counting
Vicky ________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 10 months and counting
Vivienne [Mom of]_________________ March 2011 Liver ____________________ 1 year 10 months and counting
Waterdreamer _________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _____ 3 yrs 2 months and counting
Waytooyoung ______ Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab __ 2 yrs 11 months and counting
@Whonose _________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 6 years and counting (NED since finishing chemo)
Yankeebikachic _________ (April 2006 IIIC) July 2008 Nodes in sup. clav. __________ 4 1/2 yrs and counting (NED since Dec. 2008)
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
Last edited by Jackie07; 02-05-2013 at 11:12 PM..
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01-14-2013, 02:52 PM
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#249
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Junior Member
Join Date: Jan 2013
Posts: 2
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Re: Calling all stage iv sisters
So grateful for this thread. Just found out stage4, has gone into the bone, three yeaRS after being diagnosed stage3a her+++ breast cancer. Thought I might be out of the woods until my recent tumor marker and follow up pet scan. Chemo to start again this friday. Not relishing the idea of being on Herceptin til infinity but not ready for life to be over yet either. Have a quick question....Long term Herceptin users do you have Muga's every 3mths?
Seeing all the wonderful numbers on the above post made my heart sing!
Hugs and Happiness
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01-14-2013, 03:54 PM
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#250
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Calling all stage iv sisters
Hi Pamyjean
sorry that we have to "meet" you here in this thread, but please do take hope from the stats! It is 5 years on January 16 since I commenced Herceptin, and have been having it every 3 weeks ever since - never missed a treatment (even after a major motorcycle accident!) Generally my onc aims that I have a Muga every 3 months, but sometimes that could pan out to 4 or 5 months. Because my scores are always about the same, he is now comfortable if it's not quite every 3 months.
All the best for chemo starting this week - what are they givinig you?
Best wishes
Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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01-14-2013, 05:37 PM
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#251
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Junior Member
Join Date: Jan 2013
Posts: 2
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Re: Calling all stage iv sisters
Hi Bunty,
I am getting the same thing as 3 yrs ago...taxol,carboplatin and herceptin. This time instead of once every 3 weeks I will go every week for 3 weeks with the 4th week off.
I am truly amazed at a mugs every 3mths, lol, with all they have thrown at me it is the one thing I question.
I just called my sister and read off the ladies roll call and how many yrs since diagnosis....she was almost in tears because she was sure I was heading out soon...
so I am so thankful for finding this site. Don't know why it took so long  |
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01-14-2013, 06:08 PM
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#252
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Re: Calling all stage iv sisters
Welcome Pamjean, so sorry that you had to join us....but isn't great to have this site...the ladies here are so informed and encouraging it is a great place to come for a boost. I have had bone mets since 2005 and been on zometa and herceptin ever since without too many problems...I did end up getting osteocrenosis of the jaw in 2010...but that has been dealt with and zometa is now every 9 weeks instead of 4. I get an echo of the heart (ultrasound) every 12 weeks..I did get a weakened heart muscle (2010)but I went off of herceptin, saw a cardiologist, lost 70lbs, took heart meds and then was good to go..no heart problems since. I have been off heart meds for about 3 months now so we'll see how things go.
Anyway glad you found us and that you have been given hope and encouragement here!
All the best when you start chemo!
Tammy
PS Thank you Jackie for starting this thread!!!
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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01-30-2013, 03:23 PM
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#253
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Member
Join Date: Jun 2011
Posts: 5
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Re: Calling all stage iv sisters
Originally diagnosed in Jun 08 with stage IIb. Then Stage IV in Nov 2010. Been NED since Jun 2011 after starting TDM-1 Marianne study!
__________________
Eva Sophia
Jun 08: stage IIb diagnosis at age 36
Jun-nov08: fec+taxol+ herceptin for one year
Dec08: lumpectomy and axillary lymph node dissection
Mar 09: radiation
Feb09-nov10: NED on tamoxifen and zometa every six months
Nov10: stage iv w 2 breast recur and mets to sternum and spine
Dec10: oopherectomy (ovary removal). Started femara
Jan11: cyberknife to spine and sternum
Apr 11: TDM-1plus minus pertuzumab Marianne study
June11: breast lumps gone. Bone activity way down.
Nov11: NED
Jan 13: Still in study. Dose reduce to 3.0 from 3.6
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01-30-2013, 04:33 PM
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#254
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Senior Member
Join Date: Jun 2011
Location: Iowa
Posts: 231
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Re: Calling all stage iv sisters
Thanks Eva- I got an email as soon as someone replied to this thread, and what a joy it was to read your response! I'm a bone only gal too, currently on Herceptin, Tykerb and Faslodex (ovaries out)- but come late Feb, I'm probably going to switch to TDM1 (if this therapy doesn't work anymore). What great news to hear from someone who has had a good response from TDM1, despite rocky responses from other cocktails.
Thanks
Kristin
__________________
[B]Kristin
Aug 2010: diagnosed stage 3b, 4 mo. after birth of son. 29 yrs old and breastfeeding, ER/PR-, Her-2+ started Neoadjuvant therapy: 4x FEC, 10x abraxane & Herceptin
Feb 2011: L mx with recon. Path. showed only DCIS but 4/10+ nodes.
March 2011: 6 wks rads.
Mother passed, lower back pain.
Late May 2011: Bone mets but organs clear; Tykerb, Xeloda, Xgeva. Stopped Herceptin. Implant infected: removed implant.
October 2011: Bone progression; Gemzar and Carboplatin & restarted Herceptin.
Jan 2012: Progression, re-classified as ER+; Tykerb, Herceptin, Zoladex & Femara. Anti-E is working!
May 2012: ovaries out, markers stable but elevated. Cont. Herceptin, Tykerb, Xgeva & Femara.
Dec 2012: aromasin
Jan 2013: faslodex, herceptin, tykerb
Jun: Kadcyla
Aug: Rads to hip, then Perjeta, Herceptin & Taxotere
Nov 2013: Perjeta, Herceptin, Halaven
Early 2014: Affinitor, Aromasin, Perjeta, Herceptin.
June 2014: Estradiol, Perjeta, Herceptin
Aug 14: Tamoxofin, H & P
http://kristin-notdying-blog.blogspot.com/
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01-30-2013, 04:46 PM
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#255
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Member
Join Date: Jun 2011
Posts: 5
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Re: Calling all stage iv sisters
Kristin - Good luck to you! How is the Tykerb? Are they thinking it is going to stop working for you? And the Feb TDM1 date - is that because they except to get approved in Feb?
__________________
Eva Sophia
Jun 08: stage IIb diagnosis at age 36
Jun-nov08: fec+taxol+ herceptin for one year
Dec08: lumpectomy and axillary lymph node dissection
Mar 09: radiation
Feb09-nov10: NED on tamoxifen and zometa every six months
Nov10: stage iv w 2 breast recur and mets to sternum and spine
Dec10: oopherectomy (ovary removal). Started femara
Jan11: cyberknife to spine and sternum
Apr 11: TDM-1plus minus pertuzumab Marianne study
June11: breast lumps gone. Bone activity way down.
Nov11: NED
Jan 13: Still in study. Dose reduce to 3.0 from 3.6
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02-05-2013, 09:06 AM
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#256
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Member
Join Date: Jul 2012
Posts: 14
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Re: Calling all stage iv sisters
I've been stage IV since April 2004 (almost 8 years!). Initial diagnosis 13 years ago. I feel fortunate that I've been doing so well. All over the place from side effects of Tykerb, Xeloda, Geron (clinical trial), paclitaxel.... Had 2 SRS (cyber knife) to brain - about to get another.
Mets in lungs, bones, brain, lymph. I do yoga 4x/week and weight training once a week. Had to give up tennis. Not riding my scooter to work right now, but only because its so cold! Hair has come and gone twice and my weight has varied by 30 pounds depending on what drug I'm taking.
I feel good right now. Working 40-50 hours/week.
I know the brain mets are the highest importance right now - dealing with those. I know I'm not alone. In each yoga class I give thanks to those women upon whose shoulders I stand, those around me now, and those who will continue on after me!
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02-05-2013, 09:49 AM
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#257
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: Calling all stage iv sisters
A-
What a beautiful post. I wish you 30 more years of yoga and as many hours of work as you enjoy! You exemplify "really LIVING every single day"!
All the best to you!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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02-05-2013, 10:28 AM
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#258
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Re: Calling all stage iv sisters
Such wonderful posts by all of you. Given a recent article Lani posted, I am wondering if the data could be sorted for Er+ and Er-? If there are multiple types of her2+ bc it would be interesting to see the numbers....if its a simple excel type addition process.
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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02-05-2013, 04:08 PM
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#259
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Calling all stage iv sisters
Welcome A-L and Eva, wish you weren't here but really liked reading your posts - you both exude great spirit!
Cathya - I think that's a great idea after reading Lani's post as well. Again it reminded me of how fortunate we have Lani in our midst!
Best wishes
Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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02-05-2013, 04:11 PM
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#260
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Member
Join Date: Jul 2012
Posts: 14
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Re: Calling all stage iv sisters
To PWiswell!!
I'm on Tykerb and have done Xeloda before but never together. How are you doing with the combo? Ann
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