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I agree. Don't really know what part of FL you are in, but you need to be somewhere where there are AA experts, even if it means going out of state. Has your doctor tried to get you to be seen at the NIH? If not, you ought to push them to do that. And, maybe you do need a new team of docs to work with if they feel they are out of options. As others have said, there are many drugs out there that you likely have not tried yet. Work with an expert who will give you these options. Hang in there!
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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