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It may be worthwhile to have a consult set up with your doctor and NIH. I can't think of a good reason why your doc would oppose one unless his ego won't let him.
I agree that it's a good idea to make sure the combination you have him on is appropriate as well as the dosages.
Good luck.
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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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