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Old 07-01-2012, 12:26 PM   #36
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: THIS IS MY NOW time...!!!!!!!!!!

Dear Andi of Rarified Womanhood -

Yes, I have also heard the oncologists start to use the "other C word" for us long time remission types. Two years ago at the San Antonio Breast Cancer Symposium, those words were said out loud and the doctors who know the likes of us are in the process of gleaning info to share with each other as to our paths to this point. (Up to the point HIPA allows.)

I had a very interesting chat with a Senior Staff Scientist at Genentech who wants to know more about those of us who had many years of Herceptin, went off it and have remained NED. I told him there are several of us who share this previously unbelieved path.

At five years out, they were mildly interested and now some of us are at 10 years, off our precious Vitamin H, and this has them really curious.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
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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