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Old 10-21-2009, 12:09 PM   #16
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: I just hate this part of the whole thing....

EDEMA question. Forgot to answer that part.

The edema is some inflammation surrounding the tumors and this is the reason they give us the the Decadron (dexamethesone), which is a steroid and will reduce that inflammation.

I was started on Decadron IMMEDIATELY - the same night as my MRI result came in. I had a few pills left from when I had to premed for Taxotere. I had some edema beginning to encroach on my left brain ventracle. (The ventracles act as in the heart and are little pumps to move the cerebral spinal fluid through the brain area.)

Please get in to see a radiation oncologist THIS WEEK, OK? Then make your decision about taking Tykerb or whatever.
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"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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