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Hi Michal!
Danazol does have some potentially nasty side effects, including both acne and seborrhea -- though what happened to you sounds more like an allergic reaction.
Even scarier are the very rare Peliosis hepatis (blood bubbles in the liver) and benign hepatic adenoma (tumors in the liver), either of which can suddenly cause internal bleeding, as well as pseudotumor cerebri, where you get pressure on the brain that acts like a tumor, but isn't. These are both pretty rare, but are associated with long-term, high-dose use, which is a reasonable description of the two-year, 800mg per day trial I am on. I'm keeping my fingers crossed.
Like everything else with MDS, you get a disease that's trying to kill you, and then you take drugs for it, and the drugs try to kill you.
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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