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Old 10-10-2011, 02:11 PM   #118
Jackie07
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Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
Re: Calling all stage iv sisters

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

Adriana Mangus__ Er- Pr- Her2+ (June 1994 Er+Pr+) July 2003 Lung ________T-DM1_____________ 8 year 2 months and counting
Ahoff (Ann) ____________________________May 2010 IBC ______________________________ 1 year 4 months and counting
@ Angela ( - NC) __________Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife)____4 years 9 months and counting
Angela R _____________________________ (2009) April 2011 _____________________________5 months and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 __________ 3 years 8 months and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _________________________9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain _________________________ 7 yrs 4 months and counting (NED)
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver ______________ 3 yrs 11 months and counting
@cdbernal (Charlyn)_________________________Aug? 2006Liver __________________________5 yrs and counting]
Ceesun (Cathy) _________________________June 2006 Lung ______________________________5 yrs 3 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur ________________ 5 yrs 11 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver _________________________ 4 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain ________ 3 yrs 5 months and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 2 yrs 7 months and counting
DEBBIE S______________________Er- Pr- Her2+ Oct. 2004 Liver ___________________________ 6 yrs 11 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 11 months and counting
@Delaney _________________ Er- Pr- Her2+ (2008) 2010 Nodes Skin Lung Hip Brain __ Allto Trial ___ 1 2/3 years and counting
DMWARN [wife of]___________________ (1999) 2000 Spine Lung __________________________ 11 yrs and counting
DianaMK ________________________ _(Dec 2006) June 2010 Skin Lung ______________________ 1 yr 3 month and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _2 yrs 4 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 7 months and counting
Emelie B____________________Her2+ (Nov. 2006) Jan. 2010 Sternum lung liver bone _____________ 1 yr 8 months and counting (NED)
Fauxgypsy ____________________ Er+ Pr+ Her2+ Feb 2007 Liver____________________________ 4 yrs 7 months and counting
Flossie__________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck _____________________ 3 yrs 2 months and counting
@Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 1 month and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain _________________ _2 yr and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs ______________________ 5 months and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1_____ 6 yrs 1 month and counting
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) ________________7 months and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _________ 5 months and counting (all clean)
@jkdowl _____________________(Dec 2010 III) Feb 2011 Bones _____________________________7 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED)___________________ 4 yrs 8 months and counting
Joan S. _____________________________________April 2007 _____________________________ 4 yrs 5 months and counting
Kathy T_____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs)_________ 8 yrs 8 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver _____________________ 5 yrs 10 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver____________________________ 1 yr 3 month and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver ________________________2 weeks
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine______ 10 yrs months and counting (6 yr NED)
Kim in DC ____ Er- Pr- Her2+ (Aug 1998) 2004IBC Feb. 2008 Skin Sternum _____T-DM1 (2 yrs)________ 3 yrs 7 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) _______________7 months and counting
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ________________________ 8 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 4 months]
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain ______________________________ 8 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ (Feb 2008) Aug 2011 Lung _______________________ 3 weeks and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 2 months and counting (6 months NED)
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________4 yrs 8 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver ____________________________ 3 yrs 11 months and counting
Mamacze _____________________________ (2001) 2004 Liver and lungs ___Seattle Vaccine _______7 yrs and counting (NED)
Mandamoo (Amanda)___Er-Pr-Her2+ 2B (Feb 2011) June 2011 skin, axilla node, lung ___Bolero3_______ 3 months and counting
Marilyn _______________________________ (2000) July 2001 Bones ________________________ 10 yrs 2 months and counting
Mary L____________________________(Oct 2003) July 2004 Skin____________________________7 yrs 2 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum ___________ 9 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 1 month and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver _____________________________ 4 months and counting
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________2 yrs 7 months and counting (NED)
Nsebesta _______________________________ (2001) May 2004 Liver _________________________7 yrs 4 months and counting (NED since 2005)
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_________________ 9 yrs and counting
PatE _______________________________________Oct 2007 Liver spine ______________________ 3 yrs 11 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ________ 1 year and counting
@Peggy09____________________________________Feb. 2010 Liver, bone, lymph nodes _________ 1 ½ yrs (NED)
Phil (‘s wife) ___________________________________________2006 _________________________5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ___________________ 6 months and counting
Radiant __________________ (2005) 2010 Liver & Soft Tissue Mediastinal nodes _________________ 1 yr 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 3 yrs 9 months and counting (NED since 4-16-2008)
@Shaysmom (Kelly) _______________ (2001 Stage III) 2002 Ovaries 2009 Mediasternum ____________ 9 yrs and counting
Sheila _______________ Er- Pr- Her2+ (Feb 2002) Sept. 2003 Neck nodes _______T-DM1(3) _________ 8 yrs and counting
Sherryg683 __________________________________ Dec 2005 Lungs _________________________ 5 yrs 9 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _______ 4 yrs 6 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ___________________________ 8 yrs 8 months and counting (NED since 2005)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver____________________________________ 4yrs months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip ______________________________7 yrs 6 months and counting
@Tiquer505 _____________Er- Pr- Her2+ (1997) Four recurrences so far _________________________5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ____________________________________ 5 yrs 1 month and counting
TriciaK ________________ Er+ (1985) 1990 spine, 2004, 2010 lung _____________________________ 21 years and counting
Trish ____________ Er (2+) Pr (3+) Her2 (3+)(May 2004) Dec. 2006 Liver 2008 Bone _________________ 4 yrs 9 months and counting
Unregistered _____________________ Jan. 2007 __________________________________________ 4 yrs 8 months and countin
Unregistered (8-25-2011 #106) __________________________________________________ ________9 years and counting
Vicky____________________________March 2011 Liver Spine_______________________________ 6 months and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 6 months and counting
@Waterdreamer___________________June 2008 Nov Lungs and bones ________T-DM1___________3 yrs 3 months and counting
Yankeebikachic ___________(April 2006 IIIC) July 2008 Nodes in sup. clav._______________________ 3 yrs 2 months and counting (NED)

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

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

*Including Christine ((1990) 1999 Chest Brain NED 2001~) and AndiBB ((1995 Lobular) 1998 Liver NED 1999~), those who have posted on this thread, and members gleaned from other threads.
__________________
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; 10-28-2011 at 11:52 PM..
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