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Old Thu Jul 8, 2010, 01:05 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi David,

I also wrote to Dr. Young when I was struggling to get a diagnosis. My understanding is that he evaluates your case beforehand to determine if you fit into a clinical trial. If you do, you can be treated at NIH free of cost (except for transportation and lodging). You may have to go back there after treatment at periodic intervals, depending on the trial.

I opted to find an AA expert (or two) closer to home. I consult with them a couple of times a year in person, and see my local hematologist (who is not an AA expert) other times. All my treatment has been with my local hematologist for insurance reasons. Fortunately, my local doctor welcomes the advice from the experts as to how to proceed with my treatment. This may not always be the case!

I think it is invaluable for your own sanity to have a *personal* relationship with an AA expert. It doesn't have to be NIH, but it should be someone who sees more than a handful of AA people in their lifetime.

I chose to have my treatment locally so that I could be with my family. The downside of this was that it was pretty stressful going through ATG at a hospital where no doctor on the floor knew anything about AA! Luckily, I didn't have too adverse a reaction to the drugs, as they didn't know how to respond! Another downside of having a non-AA expert as your primary hematologist is that you may be subjected to more tests or drugs than necessary, as they haven't "seen it all before" and don't know how to react.

In conclusion, get a second opinion with an AA expert (NIH or otherwise)!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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