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I was diagnosed with MDS RAEB 2 and was told that my only chance for a cure was stem cell transplant. Before getting a SCT they wanted my blasts don to less than 5% from the 14% they were at. They were recommending Vidaza but told me it had less than 40% success rate. Dr. Pollyea call me and told me that I had a rare gene mutation and that they were doing a clinical trial on AG221 which selectively attacks the mutant IDH2 gene with very little side effects. In the first month my blasts went from 14 to 4%. In the second month blasts were 1%. My platelets, WBC, and RBC remained critically low. In the whole trial I was the only one that responded like that. Dr. Pollyea advised me that to date all drug responses have been temporary and he as not expecting AG221 to be any different, and that with my low blood counts having low blasts was not that much of an advantage. The low blast count put me in a good position for a SCT and that is what he advised.
Agios is the creator of AG221. Their web page is at:
http://www.agios.com/index.php
Google search will turn up a lot more info and the clinical trial results.
Have you been diagnosed with mutant IDHx? It is not common. Mutant IDH2 occurs in about 5% in MDS and 15% in leukemia. Without the mutation AG221 does not work. I will try to answer any specific questions you might have.
We found very good lodging for the months we had to spend in Aurora after the transplant. We live 50 miles north of UC. 1.25 hour drive, or 1.5 hours in rush hour.
Ray