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Old 02-20-2012, 04:21 PM   #161
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

Current stats:
Total 103 members* and 453 * years 3 months as of March 6, 2012

@ - members gleaned from other threads
*Including the founder of this group, Christine ((1990) 1999 Chest Brain NED 2001~), those who have posted on this thread, and members gleaned from other threads

[Introduced to one of our new members this thread which Jean had started in January. Then I noticed SoCalGal's tally (145 years for all 33 members) back in March. Thought I'd double check and add the ones after her posting. And I came up with 220 years and three months. (60 members* and 284* years as of July 9, 2011.) And it suddenly downed on me that I have survived my first diagnosis of stage I for 8 years. My recurrence in 2007, a Stage IIb, was caused by a series of failures - the surgeon thought she had had a clean margin, she didn't; the radiologist thought the shadow on the mammograms was 'scar tissue', it wasn't; my oncologist thought I was 'cured', he was wrong; my family doctor thought I was hypochondriac, he was also wrong ...

Will I have another recurence and become stage IV one of these days? Nobody knows. But just knowing the fact that so many of our stage IV sisters have beat the odds/on maintenance/receiving active treatment gives me confidence that whatever happens in the future, there is hope.

Thank you, stage iv sisters, for sharing your fighting spirit and triumph with us. 6-15-2011]

From NancyL: "Go to http://www.mbcnetwork.org/ and read stories about women who have been metastic for many many years. I also have a good friend, Stage IV for 11 years, continuously on Herceptin and doing well."

Name ____________ Er Pr Her2 (Initial Diagn) Stage IV Diagnosis _________ Clinical. Trials _______ Triumph years since StageIV ___ (NED = No Evidence of Disease)

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1___________ 8 year 7 months and counting
Ahoff (Ann) ____________________________May 2010 IBC __________________________________ 1 year 9 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal ____________________ 7 months and counting
AndiBB ______________Er-Pr-Her2+ (1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 6 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) 5 years 2 month and counting
Angela R _____________________________ (2009) April 2011 _______________________________ 10 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 4 years 1 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine ________________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 9 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 4 months and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver __________________________ 5 yrs 6 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung ________________________________ 5 yrs 8 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 5 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial ___ 7 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 5 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 4 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 9 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 10 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 9 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 2 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver _____________________________ 7 yrs 4 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 4 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial _1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung ___________________________ 12 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 8 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 9 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 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 1 month and counting (NED till 1-2012)
Emy ____________________ Er+ Her2+ (2001 DCIS) 2010 Lung 2011 Liver ______________________ 2 yrs and couonting
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver _____________________________ 5 yrs and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 7 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial _____ 5 yrs 6 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 2 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 10 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1__ 6 1/2 yrs and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 8 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 10 months and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 11 years 9 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)_________________ 5 yrs 1 month and counting
Joan S. _____________________________________April 2007 ________________________________ 4 yrs 10 months and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 3 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 1 month and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 3 month and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 8 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 6 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 5 months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____ T-DM1 (2 yrs) ___ 4 yrs and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 1 month and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 9 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 1 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 2 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 7 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 3 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 4 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _____ 7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3 __ 8 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 7 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 7 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year 2 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 6 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 7 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 9 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 9 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 1 month and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 5 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 4 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 5 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 11 months and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 years and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _______________ 1 yr 11 months and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ___________________________ 1 yr 4 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver _________________________________ 5 1/2 years and counting (3 + years NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 5 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 4 yrs 3 month and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum _______ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______ T-DM1(3) ______ 8 yrs 5 months and counting
Sherryg683 __________________________________ Dec 2005 Lungs __________________________ 6 yrs 2 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain ___4 yrs 11 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 1 month and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 5 months and counting (4 weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 5 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 7 yrs 11 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 6 months and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung ____________________________ 21 years and counting
Turbo ________________________________ Lung 2007 ________Herceptin only __________________ 5 yrs (NED)
Unregistered _____________________ Jan. 2007 ____________________________________________ 5 yrs 1 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ ________ 9 years and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_11 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 11 months and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 8 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. _____________________ 3 yrs 7 months and counting (NED)
__________________
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; 03-05-2012 at 11:38 PM..
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