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Teresa,
One question for the doctors is how and when they would decide that the decitabine has helped or failed to help. Their timeline for a response may be different than what you've assumed.
Don't be surprised if the doctors concentrate on your long-term improvement and pay less attention to your transfusions, pneumonia, and any other "temporary" setbacks. Those events can be alarming and worrisome to patients, but not as important to the doctors' view of your overall progress.
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