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Old Sun Feb 12, 2012, 09:50 AM
Greg H Greg H is offline
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Join Date: Sep 2010
Location: North Carolina
Posts: 660
Hey Cheri!

The NIH trial starts out at 800mg/day. Dr. Dumitriu told me that the dosage can be reduced if side effects are a problem.

So far, I haven't had any. My liver counts are fine, my kidney counts are fine, and there don't seem to be any other changes that I can detect. I am completely bald on the top of my head, and have been for years. I've been growing a nice crop of peach fuzz up there, but that started when I began taking a multivitamin that includes saw palmetto. I suppose the Danazol could be escalating the process, but I wouldn't swear to it. My wife thinks it's hilarious to see hair on my head and laughs every time I take off my ball cap.

As for my counts, both my platelets and my neutrophils have increased since I started the drug. On the red cell front, I still need transfusions every other Friday. I have my CBC every other Wednesday, just before transfusion, and my Hgb "in the trough" has gone from 7.1 when I started Danazol to 8.4 this past week. Absolute reticulocytes have gone from 40 to 79. I'm not ready to call that progress yet, but it seems like there is some glimmer of hope in those numbers.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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