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Old Sat Jan 24, 2015, 02:41 PM
rar rar is offline
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Join Date: Mar 2014
Location: colorado
Posts: 215
I am 207 days post transplant. Last Feb. I was diagnosed with MDS so mild it would never need treatment. 2 months later I had very high risk MDS that would kill me if left untreated. I went on a clinical trial with ag221 and in a month my blasts went from 14% to 1%. All my other blood counts stayed critically low. Consultation with 3 respected hematologists agreed due to low blood counts, my only option was a transplant that I had on Jul 1 2014. All went well until day 99 when I got sick. I had grade 3-4 GVHD and serious cases of C.Diff and CMV. I as in the hospital for 2 months unable to eat or get out of bed. I lost 40 pounds and most of my strength. They were able to cure the infections and with 18 drugs to control the GVHD. They sent me home on an IV feed. A couple weeks ago they let me start eating again and exercising. I put on 10 pounds and can walk a couple of miles again.

From what I have read if MDS is very high risk the best option is get remission followed by a transplant asap. This was my case. With less high risk MDS various drugs are more appropriate while they work. Without hesitation I would follow the same course again. Don't depend on a forum, follow the advice of doctors you trust.
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