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I would pursue a second opinion with a center/doctor who has extensive experience with PNH. It should not alienate your current team. If it does, you have to wonder what that says about them.
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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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