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Old Mon Sep 21, 2009, 10:13 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Do you know if they checked your Iron, B12, folate, B6, Copper and zinc blood serum levels? Low normal of these nutrients indicates an insufficiency so find out if they tested these and get a copy of the results. Vitamin D should also be checked. Most doc do not give much credence to nutritional status so you really need to be your own advocate regarding these matters.

Also, you should get a work-up on your hormones.

Did they discuss the issue of "shortened telomeres" with you? The shorter the telomeres on your stem cells means they have shorter life span because don't replicate well. Which means ATG most likely won't work. You may want to pursue another opinion with NIH in Bethesda MD...they would check for that. I think most would have classified your condition as moderate AA by now.

If you are going for non-related BMT, you may want to check out Johns Hopkins. They have recently started a protocol which greatly reduces the severity of graft vs host disease in MUD transplants for refractory AA patients. I think they've had only three or four people go through the process and are having good results. So it is in the beginning stages and they don't have a lot of data.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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