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Old 03-20-2013, 02:38 PM   #1
caya
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Re: 8 years since brain mets ... and counting
Great news Steph, thanks for sharing.
Big congrats, you go girl!!

all the best
caya
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ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 03-20-2013, 03:13 PM   #2
nsebesta
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Smile Re: 8 years since brain mets ... and counting
Great news StephN! I too just had check-ups and got the all clear. So that makes me 8 yrs out from liver mets!

I was wondering how often they did scans on you now. I finally talked MDAnderson into every 6 mos. I've been on that schedule for about 1.5 years. Maybe after the next check-up I'll ask for 8 mos.

Thanks for sharing your great news!
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Old 03-20-2013, 03:22 PM   #3
StephN
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Re: 8 years since brain mets ... and counting
Thank you all.

Nsebesta - did you have brain mets or only liver mets? You do not have a signature posted.

My brain MRI has been every 8 months for a couple of years. I get a CT of chest, abdoman and pelvis once a year now. These are two separate doctors - one follows my head and the other follows by body from ears down.

I also have frequent blood draws and 3 different tumor markers checked, so I have a lot of coverage to tip off to any disease getting active again.
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Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 03-21-2013, 01:10 PM   #4
Rolepaul
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Re: 8 years since brain mets ... and counting
8 years is fantastic. Nina will be coming up on May 30 with one year of NED. You are definitely an inspiration to all those who have had Brain involvement.
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Old 03-25-2013, 07:56 AM   #5
rava
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Re: 8 years since brain mets ... and counting
That is so great news!! Congratulations!
I love reading your posts since our initial diagnos is so alike.
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Diagnosed 10.26.11 with IDC Medullary Carcinoma, 2,2 cm, er- pr - her2 pos. 7/13 pos nodes. Stage 2b. Mx 11.8.11. Started FEC 100 x4 12.16.11. Then had 4x taxotere and Herceptin. 25 rads.
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Old 03-25-2013, 01:06 PM   #6
fullofbeans
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Re: 8 years since brain mets ... and counting
StephN this is amazing! Very happy for you XX
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35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies

Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..

superior vena cava blocked: stent but face remains puffy

April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.

Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.



'Under no circumstances should you lose hope..' Dalai Lama
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Old 03-25-2013, 04:00 PM   #7
Jean
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Re: 8 years since brain mets ... and counting
Steph,
Such Happy News! You are always positive and always displaying hope to all. Continued blessings being sent to you.

Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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