Norma,
Your best bet is to get a consult with Dr. Robert Brodsky at Hopkins. I know they are having some good success in refractory SAA patients but it's best to find out the details directly from him and he'll even give a few names of those who have gone through it.
One of the forum members, Karen, did the protocol for MDS. You can search her posts under mausmish here:
http://forums.marrowforums.org/membe...astposter&f=26
Marlene
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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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