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04-09-2012, 08:49 PM
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#1
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Calling all stage iv sisters
Hi Salli,
I also welcome you. Gods blessings to you and your family. I hope you start a new thread so you will receive alot more welcomes! You will more noticed.
Peace,
Nancy
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04-10-2012, 04:51 AM
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#2
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Calling all stage iv sisters
It's inspiring and uplifting to know so many stories of people living full, courageous lives after a Stage IV diagnosis.
Carpe diem!
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-10-2012, 05:20 AM
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#3
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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
Welcome Salli!
So glad you are doing well!
If you decide to take Nancy's suggestion, and start a new thread to share your inspiring story...may I suggest the Newcomers section on the board. It's easy to start a thread, and I think your story would be so uplifting to many...who may or may not stumble across it here.
Wishing you continued health!
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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04-10-2012, 01:39 PM
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#4
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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 109 members* and 461 * years 10 months as of April 10, 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 9 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 1 year 11 months and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 8 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 9 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) __5 years 4 month and counting
Angela R _____________________________ (2009) April 2011 _____________________________ 1 year and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 3 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 7 yrs 11 months and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 2 years 10 months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 1/2 yrs and counting
@cdbernal (Charlyn) _________________________ Aug? 2006Liver __________________________ 5 yrs 8 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 5 yrs 10 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 7 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial ____ 9 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 7 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 1/2 yrs and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 11 months and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain _________ 4 years and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) _________ 3 yrs 2 month and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ___________________________________ 10 months and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 3 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 1/2 yrs and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 1/2 year 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 10 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 2 yrs 11 months and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 2 month 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 3 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 2 month and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 9 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 8 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 _____________________ 1 year and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 8 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 9 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year 2 month and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 2 month and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 9 years 11 months and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 3 month and counting
Joan S. _____________________________________ April 2007 _______________________________ 5 yrs months and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 5 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 3 month and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 5 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 10 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 8 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 7 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 2 month and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year 2 month and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 1 month and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 3 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 11 months and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 3 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 4 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 2 month 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 9 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 years 5 months and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 2 month and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 1/2 yrs months and counting (NED)
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 __ 10 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 9 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 9 months and counting (NED since Oct 2007)
@Michka______________Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver (NED) June Sternum _________ 1 year 4 month and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 8 month and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 9 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 11 months and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 2 month and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 7 yrs 11 months and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 3 month and counting
Pam P_________________ Er+ Her2+ (June 2001) IBC Sept 2002 Bone Brain (WBR)_______________ 9 yrs 7 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 6 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 7 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 2 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 1 month 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 _______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin _________________________ 1 yr 5 months and counting
Ricky (‘s wife) _______________________________ 2006 Liver ________________________________ 5 1/2 years and counting (3 + years NED)
Salli _____________________ Er+ Her2+ (Nov 2008) Oct 2010 spine, liver _____________________ 3 years 6 months and counting (5 months NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 7 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ___________________________________ 4 yrs 5 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 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs __________________________ 6 yrs 4 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 1 month and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 3 month and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 7 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 7 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 9 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 8 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 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ __________ 9 years and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 1 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 1 month and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 10 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. _____________________ 3 yrs 9 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; 04-11-2012 at 06:37 PM..
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04-11-2012, 11:34 AM
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#5
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Member
Join Date: Jan 2011
Location: Houston, TX
Posts: 9
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Re: Calling all stage iv sisters
Hello everyone. I have been viewing this site for quite a while now but have yet no courage to chime in. I did post a reply once, but that's about it. I have been stage IV since Dec 2010 with mets to left lung, lymph nodes, and bones. I was first diagnosed stage I back in 5/03, NED for 7 years then it came back on annual chest X-ray. Mammograms came back clear, always had been! Strange, huh? My old onc only gave me Xeloda and didn't want to listen to me to retest the receptor status. I left him and went to MD Anderson. After retesting, I was confirmed HER2+ and officially triple positive since then. I am stable now and on Herceptin, Femara, Faslodex, and Zometa.
When I was diagnosed the second time, I was crushed, I couldn't eat, get up, and do my daily stuff. I stumbled upon this site while looking for survivor stories and this group gave me hope. You all have positive way of dealing with this disease and it's contagious! I slowly began to smile again and stand up to what life has dealt me. It's been 17 months now.
Thank you all for such encouraging stories.
Maria
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04-11-2012, 01:03 PM
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#6
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Calling all stage iv sisters
Glad to hear from you, Maria. Welcome to our group.
Amelia
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04-11-2012, 04:58 PM
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#7
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Calling all stage iv sisters
Hi gang!!
I wanted to update the Stage IV survivors list with some good news.
My old friend Abraxane has done the trick one more time.
Although I am completely bald and my finger nails are lifting from their beds (YUK!!)..... As of my April 5, 2012 scan I am back to NED!!! It felt so good to update my lengthy signature with a green, NED status.
Timing is perfect as I get a chemo break and will be off chemo to travel to my nephew's graduation and also for an annual mother/sisters trip. YEA!!! I am day dreaming of all the fun I can pack into a 3 month window before I receive another scan.
For now...I'll take it. Celebrating for sure.
I hope this provides encouragment that and old dog can do old tricks.
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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04-11-2012, 07:01 PM
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#8
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Senior Member
Join Date: Mar 2012
Location: Alabama
Posts: 121
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Re: Calling all stage iv sisters
13 months
March 2011: dx advanced IDC stage 4, PR/ER-, HERC2+, tumor in left breast 11cm, tumor in liver 1cm. 6 rounds Taxotere/Carboplatin & Herceptin. Continue Herceptin every 3 wks to current. Post-chemo/pre-mx scan July showed breast tumor 1.5cm, liver met gone. August: bi-lat mx, path report showed NED. Feb 2012 scan: 6 small mets to liver despite normal tumor markers and no pain. Added Tykerb daily. Next scan will be May 2012.
__________________
Vicki
Lord, give me the comfort of Your embrace and acceptance of Your will.
3/11: DX: IDC, HER2++, ER/PR neg, stage 4, mets to liver. Primary tumor: grade 3; 11 cm. 2nd smaller tumor: ~2.5cm. Multiple affected nodes, 1 spot on liver. 6 rounds TCH prior to bmx.
7/11: Nothing left except Primary breast tumor now 1.5cm.
8/11: BMX, 17/17 nodes clear. No post-op chemo or radiation indicated. NED!
10/11: NED! Continue Herceptin indef.
2/12: Reoccurence of liver mets; both lobes. Tykerb added to Herceptin.
5/12: Progression of liver mets. Stop Tykerb, start Abraxane & Herceptin weekly.
8/12: Progression in liver and lymph nodes around liver and right kidney. Herceptin not working anymore! Stop Abraxane and Herceptin. Start Tykerb and Xeloda.
10/12: Severe side effects. 3 weeks break from everything.
12/12: It's working! All tumors gone except 2 (from 20+) Continue Tykerb and Xeloda. Brain and spine MRIs clear.
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04-11-2012, 07:07 PM
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#9
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Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
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Re: Calling all stage iv sisters
lori, great news, congratulations on getting to NED. I am hoping to meet up with that fella myself soon.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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04-12-2012, 12:08 AM
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#10
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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
Lori- that is fantastic news that you have NED back, congratulations, go a nd have a great time!
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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04-12-2012, 02:24 AM
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#11
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: Calling all stage iv sisters
Awesome, Lori! God is good!
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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04-12-2012, 06:18 AM
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#12
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Calling all stage iv sisters
Lori,
I am so glad to hear your good news this morning. I have been taking Abraxane treatments every two weeks, so far I have taken four treatments. How many months did it take you to get to NED?
I go to the doctor today. Taxol has worked very well in the past for me. I have very little hair left. I have a hat on right now. My toenails look bad. I am going to be glad when summer is here, so I can go bare foot.
Hope to hear your reply soon.
Amelia
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04-12-2012, 09:24 PM
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#13
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Senior Member
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
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Re: Calling all stage iv sisters
Amelia,
Given your previous success with Taxol...I am sure the Abraxane will work for you.
Since tumor markers do not work for me, my Onc scans every 3 months. The tumor flare up had reduced 1/2 by 3 months (3 weeks on / 1 week off) and was NED after 6 months.
Other than the finger nail issues, I've found the treatment to be very manageable. I sure hope you find it tolerable as well. Keep us posted!!!!
Lori
__________________
2007
Oct - Diagnosed - Stage IV 5 c.m. IDC - Left Side er/pr- Her2+++ Node + 2/14 - Single Liver Met Double Mastectomy Nov - Begin T+H 2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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04-13-2012, 12:21 PM
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#14
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Calling all stage iv sisters
Lori,
Thanks for the response. I have taken 5 treatments every two weeks, so I have two months down. I have five more weeks to work at school, and I would like to be NED by the time school starts back.
You have offered me hope. I am feeling better since the days are long, and I can get more sun light. My tumor marker dropped 7 more points two weeks ago, so I am at 54. I took a test yesterday, and I feel like it should be back in the 40 range. You were diagnosed in October 2007 and I was diagnosed in December 2007. I thank God for my four years and 4 months.
Have a great weekend. Please let all of us know how you are doing.
Amelia
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04-14-2012, 02:38 AM
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#15
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Calling all stage iv sisters
Lori
Brilliant news, you have made my day! Long may you stay NED.
Big hugs from across the pond.
Ellie
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04-15-2012, 09:16 AM
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#16
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Senior Member
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
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Re: Calling all stage iv sisters
My wife had brain mets found 11/09. Surgery, gamma knife radiation, Xeloda/Tykerb. Then various radiation hot shots for two years. PET found cancer in the Leptomeningeal area of the spine 20-30 hot spots on MRI on 12/14/2011. Radiation for ten days, then intrathecal Herceptin (40 mg for four weeks and 80 mgs since, with topotecan at the increase). IV Herceptin and Navelbine started on February 22. This is the treatment I came up with by researching in forums like this one, looking at cases studies, contacting patients that had success, and always believing in my wife being able to be cured. The nurses told my wife 50/50 for seven weeks, 5% chance to make it 6 months in mid December. MRIs on 4/8/2012 show spine tumors and brain tumors no longer taking the contrast agent, no tumor cells in the blood or spinal tap, and Nina is enjoying a normal life (except for pain in lower back). In other words, listen to this board, research your options, and keep beating on the tumors like crazy. The doctors quote statistics, while I focus on a single patient. Her case will make medical news, help patients, and further careers. I just get to hug her on a regular basis.
"Never give up" - Untouchables; "I hate to lose" - Star Trek II Wrath of Kahn; "Eye of the Tiger" - Rocky III;
In the movie "The Medicine Man" the cure was in the ants that lived in the flowers, not the flowers. The Medicine Man knew that. The Researcher did not discover this until the end of the movie. Sometimes we can discover cures better than the doctors and others. By the way, I did research on many of these drugs used to treat my wife in the mid to late 1980's. If you help one person, it may pay forward back to you.
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04-15-2012, 11:07 AM
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#17
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Senior Member
Join Date: May 2011
Location: Denver, CO
Posts: 1,427
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Re: Calling all stage iv sisters
Thank you, "Rolepaul." It's great to know stories like this one.
I was switched to Abraxane when I became allergic to the solvent in Taxol. I found it much easier to tolerate.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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04-28-2012, 01:34 AM
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#18
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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 116 members* and 496* years (and still counting) as of May 20, 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 Diag) Stage IV Diagnosis ___ Clinical Trial __ 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 10 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 9 months and counting
Alexandra1('s wife) ____ (stage 3 dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin _ 1 1/2 year and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver _____________________________ 2 years 10 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 10 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 5 month and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 1 month and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 4 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 2 years 11 months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 7 months and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 9 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 5 yrs 11 months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 8 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 10 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 8 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 7 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year and counting
CourtneyL _____________________Er- Pr- Her2+ April 2008 Liver Lung (NED) Bone Brain _________ 4 years 1 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 3 month and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ______ 1 year and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 4 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 7 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 7 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 11 months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 3 month 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 4 months 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 3 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 10 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 9 months and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year 1 month and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 8 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 10 months and counting (NED)
Jacqui ______________Er-Pr- Her2+ (Oct. 2009) Feb. 2011 Brain (VMAT radiation) _____________ 1 year 3 month and counting
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 1 month and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 3 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 4 months and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 1 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 6 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 4 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 1/2 yrs and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 1 yr 11 months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 9 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 8 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 3 months and counting
Kiwigirl _______________Er-Pr- Her2+ (Oct 2009) Feb. 2011 Brain (VMAT radiation) ____________ 1 year 3 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 2 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 4 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 4 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 5 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 3 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 1 month and counting
Lauriesh (Laurie) ____________________________ July 2010 2 Liver mets (RFA) ________________ 1 year 10 months and counting (6 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 1/2 years and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 3 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 7 months and counting (NED)
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 __ 11 months and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 10 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 10 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 yr 5 months and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 9 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 10 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 year and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 3 months and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year 2 months and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 4 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)_______________ 9 yrs 8 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 7 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 8 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 3 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 2 month 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 _______________ 2 years and counting
@Redwolf8812 (Penny) _______ Er- Pr- Her2+ (July III) Nov 2010 Skin ________Parp inhibitor___ 1 1/2 years 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 1/2 years and counting
Salli _____________________ Er+ Her2+ (Nov 2008) Oct 2010 spine, liver _____________________ 3 years 7 months and counting (5 months NED)
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 8 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________________________________ 4 1/2 years 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 8 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 yrs 5 months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 2 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 4 months and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 8 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 8 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 10 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 9 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 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 2 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 2 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 2 month and counting
@Waterdreamer ___________________ June 2008 Nov Lungs and bones ________ T-DM1 _______ 3 yrs 11 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 3 months and counting
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 3 yrs 10 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; 05-20-2012 at 04:21 AM..
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05-17-2012, 12:04 PM
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#19
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Member
Join Date: May 2012
Posts: 14
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Re: Calling all stage iv sisters
My wife had a recurance with brain mets 2 months after completing her wbr. They are now giving her chemo. I have been looking for a survivor stories. I thank this thread as my hope has increased more especially after what jackie has put together. Thank you jackie. I am very afraid as i have 3 little girls.
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06-08-2012, 02:37 PM
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#20
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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 116 members* and 520* years 5 months (and still counting) as of July 3, 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 Diag) Stage IV Diagnosis ___ Clinical Trial __ 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 11 months and counting
Ahoff (Ann) ____________________________May 2010 IBC _________________________________ 2 year 1 month and counting
Alex1 ___________Er- Pr- Her2+ (Feb 2010) Aug 2011 Liver, lymphatic, skeletal _______________ 10 months and counting
Alexandra1('s wife) ____ (stage 3 dec 2010) Feb 2012 brain (wbr) xeloda and tykerb herceptin _ 1 1/2 year and counting
allielala _____________ Her2+ (July 2009) March 2012 Liver _____________________________ 2 years 10 months and counting
AndiBB ________ Er-Pr-Her2+ (July 1995 IV ILC) Aug 1998 Liver ____Herceptin 10 years ______ 16 years 10 months and counting (NED since 1999)
@ Angela ( - NC) ________ Er-Pr-Her2+ (May 2003) Dec 2006 Lung Feb 2007 Brain (Cyber knife) _ 5 years 7 month and counting
Angela R _____________________________ (2009) April 2011 ______________________________ 1 year 2 month and counting
Annmask _________________ DCIS Her2 + (1999) Jan 2008 _______________ MM111 _________ 4 years 5 month and counting
Asahizuru _______________________ (1990, 1996) 2002 Bones Spine _______________________ 9 years and counting
Barbara H ________________________ (May 1998) May 2004 Brain ________________________ 8 years 1 month and counting (NED)
Bevilj _____________ Er- Pr- Her2+ (June 2009) bil. Mast. liver, bone 2011 skin _______________ 3 years months and counting
@Bunty (Marie) ___________________ (Dec. 2000) Oct 2007 Lung June 2011 Liver _____________ 4 yrs 8 months and counting
@Calisa71 ____________ Her2+ Er+ Pr+ (1998) axilla nodes/bones 2000 __GKRS 2007 Irinotecan, Tykerb, Herceptin, Xgeva 12 years and counting
@Caroline96 (Maria) _______________(2003) Dec 2010 lungs, bones ___ XHZ THZ Now HFFZ ___ 9 yrs and NED
@cdbernal (Charlyn) _________________________ Aug? 2006Liver ___________________________ 5 yrs 9 months and counting]
Ceesun (Cathy) _________________________ June 2006 Lung _______________________________ 6 yrs months and counting
Chelee _________ Er+ Pr+ Her2+ (Dec. 2005 IIIA) Sept 2009 Bone ____________________________ 2 yrs 9 months and counting
Choyces (Tina) __________________ July 2011 neck node and lung __ waiting for vaccine trial _ 11 months and counting
Chrisy________________Er- Pr- Her2+ (June2002) Sept. 2004 Liver _________T-DM1____________ 7 yrs 9 months and counting
Colleen007______________________ Er- Pr- Her2+ Oct. 2005 Liver, spine, femur _______________ 6 yrs 8 months and counting
CoolBreeze________________________ (Aug 2009) May 2011 Liver __________________________ 1 year 1 month and counting
Dawn ______________________ (March 2006 IIIA) Feb 2009 Bone Liver (NED April 2011) ________ 3 yrs 4 month and counting
Dawny _________Er- Pr- Her2+ (May 27 2011)lung nodes chest + neck Abraxane weekly - 16 weeks Herceptin every third week (Sept 26 NED) __________________________________________________ ___________________________________ 1 year 1 month and counting
@dchips1 (Darita) ______Er- Pr- Her2+ Jan 2006 Liver/pelvis 2007WBR osteonecrosis 2009 GKRS 6 years 5 months (1/2011 NED)
DEBBIE S ______________________ Er- Pr- Her2+ Oct. 2004 Liver ____________________________ 7 yrs 8 months and counting
Deena H ____________ Er- Pr- Her2+ (March 2010) Oct. 2010 Lung ___________________________ 1 year 8 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 ______________________ 2 yr months and counting (NED March 2011)
@Dianedack__________(Er+Pr+ Oct 2001 2 nodes) May 2009 Liver 2011Lung, Liver, Brain, Neck Node _ 3 yrs 1 month and counting
DQ1____________________ Er+ Her2+ (May 2009) Feb 2011 Mediastinal nodes Lung ____________ 2 years 4 month 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 5 months 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 4 months and counting
Flossie __________________ Er+ Her2+ (Jan 2006) July 2008 Brain Rib neck ____________________ 3 yrs 11 months and counting
Fullofbeans ________ Er-Pr- Her2+ (June 2006) August 2006 Liver ________UW peptide trial ______ 5 yrs 10 months and counting
@Flutterby ____________________ Her2+ (2003) 2006 2010 2012 Lung ______________________ 9 yrs and counting
@Gracepang _________________ Her2+ (Jan 2004) 2009 Liver Lung 2010 Brain ________________ 3 yrs and counting
Hraby73 (Holly) ________________ Er+ Pr+ Her2+ April 2011 Liver Lungs _____________________ 1 year 2 month and counting
Hutchibk ___________ Er+ Pr+ Her2+ (Nov. 2003) Aug. 2005 Chest nodes Bone Brain ___T-DM1___ 6 yrs 10 months and counting
iamlisaann (Lisa) __________ Er- Pr- Her2+ (June) July 2006 Liver Brain ___UCSF Avastin/Tykerb __ 5 years 11 months and counting (NED)
Jeana _______________________ (June 2010 IIIA) April 2011 Brain (WBR) chest wall lung _______ 1 year 2 month and counting
@jkdowl _____________________ (Dec 2010 III) Feb 2011 Bones ____________________________ 1 year 4 months and counting
@jml (Jessica) ________ May 2002 Liver 2007 supclav. Node 2010 Brain Novalis 2010, WBR 2012 _ 10 years and counting
Joan M ______________ Er- Pr- Her2+ (Sept.2003) Jan. 2007 Lung Brain (NED) _________________ 5 yrs 5 months and counting
Joan S. _____________________________________ April 2007 ________________________________ 5 yrs 2 month and counting
@KaiM _________________Er- Pr- Her2+ (Sept 2011) Nov. 2011 Bones and Liver________________ 7 months and counting
Kathy T _____________________ Er+ Her2+ (1984) Jan. 2003 Bone ________T-DM1 (2 yrs) _______ 9 yrs 5 months and counting
Kavy ____________________________ (April 2005) Nov. 2005 Lung Liver ______________________ 6 yrs 7 months and counting
KDR (Karen) __________________ Er- Pr+ Her2 + June 2010 Liver _____________________________ 2 yrs months and counting
KG1993 (Kim for her Mom) _____________Her2 + Aug. 2011 Bone Liver _______________________ 10 months and counting
Kim in CA _______________ Er+ Her2+ (Feb 1997) Sept 2001 Liver ______UW [Seattle]vaccine____ 10 yrs 9 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 4 months and counting
kk1 ___________________Er+Pr+ Her2 ________ March 2004 spots on liver ___________________ 8 years 3 months and counting (NED since 2009)
Kmswilson ____________ Er- Pr- Her2+ (Dec 2010) Jan 2011 Liver Bones ______________________ 1 year 5 months and counting
@KristinSchwick ___________________ (Aug 2010) May 2011 Bones _________________________ 1 year 1 month and counting
Krisvell _____________ Er+ Pr- Her2+ (June 2009) Jan 2011 Brain _____________________________ 1 year 5 month and counting
KsGal _____________ Er-Pr- Her2+ (Oct 2011) Dec 2011 Liver ________________________________ 7 months and counting
kykeon22 (Son of Ha) _________ Er+Pr+Her2+ Feb 2008 Lung Liver ___________________________ 4 years 4 month and counting
Laura4252 ____ (High grade DCIS 2005) recur 2009 April 2011 Left Lung _______________________ 3 years 2 month and counting
Lauriesh (Laurie) ______Er- Pr- Her2+ (March 2005) July 2010 2 Liver mets (RFA) ________________ 1 year 11 months and counting (16 months NED)
Lettik _______________ Er- Pr- Her2+ November 2009 Liver mets _TDM1 2010 ; Everolimus 2011 __ 2 1/2 years and counting
Linda b ___________________________ Er+ Her2+ Feb. 2007 Lower back & Neck ________________ 5 yrs 4 months and counting
Lori R _________________________ Er- Pr- Her2+ Oct. 2007 Liver _____________________________ 4 yrs 8 months and counting (NED)
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 and counting
Marilyn _______________________________ (2000) July 2001 Bones _________________________ 10 yrs 10 months and counting
Mary L _______________________ (Oct 2003 IBC IIIB) July 2004 Skin __________________________ 7 yrs 11 months and counting (NED since Oct 2007)
@Michka_______Er+ Pr+ Her2+ (Aug. 2006) Dec 2010 Liver Lungs Nodes _TDM1 arm (Theresa) __ 1 1/2 yrs and counting
Missyw _____________ Er+ Pr+ Her2+ (Jan. 2001) Aug 2006 Liver _____________________________ 5 yrs 10 months and counting
Mollecat _________________________ July 2011 nodes by lung, above clavicle, in neck _________ 11 months and counting
Mtngrl (Amy) ________________ Er+ (April 2011) May 2011 Liver, lung ________________________ 1 year 1 month and counting (NED 12/05)
Nancy L_______________ Er- Pr- Her2+ (Sept 2004) Feb 2009 _________________________________ 3 yrs 4 months and counting (NED)
Ninjalyn ______________________ March 2011 lungs and chest wall Navelbine/Herceptin now Herceptin/ Arimidex 1 year 2 months and counting
Nsebesta _______________________________ (2001) May 2004 Liver __________________________ 8 yrs 1 month and counting (NED since 2005)
PAFB ____________________________ (Jan. 1997) Jan 1998 Metastasis ____ Herceptin till 4/2011 _ 13 yrs 5 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)_______________ 9 yrs 9 months and counting
PatE _______________________________________ Oct 2007 Liver spine ________________________ 4 yrs 8 months and counting (NED)
@Patrice1968 _______________________________ Sept 2010 Spine, Ribs, Uterus, and Liver ______ 1 year 9 months and counting
@Peggy09 ____________________________________ Feb. 2010 Liver, bone, lymph nodes ________ 2 yrs 4 months and counting (NED)
Phil (‘s wife) ___________________________________________ 2006 ___________________________ 5 years and counting
pibikay (Hema) ____________ Er- Pr- Her2+ (2010) March 2011 Vertebrae, Liver ________________ 1 year 3 month and counting
pmoore (Pia) ______________ Er- Pr+ Her2+ (2003 II) 2010 Lung Er+ Pr+ _______ Herceptin ______ 2 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 7 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 7 months and counting
Sandra Digilio ______________________ (Dec., 2009) Sept. 2011 3 spots in bone _______________ 9 months and counting
Schoolteacher (Amelia) ______________ Nov 28. 2007 L4 ____________ WBR __________________ 4 years 7 months and counting (NED 4-16-2008 ~ May 2012)
@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 9 months 7and counting
Sherryg683 __________________________________ Dec 2005 Lungs ___________________________ 6 1/2 yrs months and counting
SoCalGal (Flori) _________________ (1996; 2002) March 2007 Lung Sternum 2008 NED in Brain _ 5 yrs 3 months and counting
StephN ___________________________ (Sept 2000) Jan 2002 Liver ____________________________ 10 yrs 5 months and counting (NED since 2005)
Survivor2be (Andrea) _________triple – (Sept 2010) 9/2011 Her2+ brain ______________________ 9 months and counting (4+ weeks NED)
SuThorn _______________ Er+ Pr- Her2+ Sept. 2007 Liver ____________________________________ 4yrs 9 months and counting (NED since 1-2008)
tammymarie1971(30) ____ Er+ (Dec 2001) 2004 liver 2005 Spine/Hip _________________________ 8 yrs and counting
teresalynn _________________________ July 2011 Liver TCH + Femera + Afinitor _______ 11 months and counting
@Tiquer505 _____________ Er- Pr- Her2+ (1997) Four recurrences so far ______________________ 5 yrs and counting
Tonya ___________________________ Aug 2006 Liver ________________________________________ 5 years 10 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 3 month and counting
Unregistered (8-25-2011 #106) __________________________________________________ _________ 9 years and counting
Vicki Revised ________________ Er- Pr-, Her2+ March 2011 liver TCH Tykerb ____________________ 1 year 3 months and counting
Vicky ____________________________ March 2011 Liver Spine _T-DM1 lungs brain 2-2012 Halaven_ 1 year 3 month and counting
Vivienne [Mom of]_________________March 2011 Liver_____________________________________ 1 year 3 month and counting
Waterdreamer ___________________ (June 2008) Nov. 2009 Lungs and bones __ T-DM1 _________ 2 yrs 8 months and counting
Waytooyoung _____________Er+ Pr+ Her2+ (Feb 2010) Nov. 2011 chest wall, Pr- T-DM1+Pertuzumab 2 yrs 4 months and counting
@Whonose _________________________________ Jan. 2007 Liver and bones ___ UW vaccine ____ 5 yrs 5 months and counting (NED since finishing chemo)
Yankeebikachic ___________ (April 2006 IIIC) July 2008 Nodes in sup. clav. ___________________ 3 yrs 11 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; 07-10-2012 at 12:33 AM..
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