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Old 10-30-2013, 11:37 AM   #3
StephN
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Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Re: NEDenise Downer Alert!

Dear Denise -

I guess you have seen a good endocrinologist, but I wanted to mention it anyway. Maybe your hormones are also on the fritzz?

You must have been tested for diabetes by now. I recall the the dreaded Decadron kicked our dearly departed Christine into diabetes. She actually telephoned me to warn me about that when I started treatment for my brain mets.

There has to be something that can be found as the reason for your symptoms and not just surmises.

So, in the meantime, keep watching feel-good movies, go to physical therapy and enjoy the wonder of the change of seasons. Or have a massage therapist come to you. Maybe something like massage therapy couldl unlock some of those areas of nerve knots?
__________________
"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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