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Karen,
Congratulations on the good response so far. There's probably little data for very-long-term evaluation of Vidaza (azacytidine) since it wasn't FDA-approved for MDS (including RAEB-2) until 2004. However, I wonder if they are still tracking the patients who participated in the trials that led to that approval. Those patients started taking Vidaza when the trials began and it would be wonderful to hear that some of them are still surviving on it.
It's understandable that your oncologist wouldn't be anxious to look for alternatives when you are doing well. But it's worth staying aware of your options, including the possibility of a transplant. You said you don't have a related donor. Have they done the initial registry search for an unrelated donor?
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