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Old Thu Aug 22, 2013, 11:23 PM
TonyBegg TonyBegg is offline
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Join Date: Jul 2013
Location: Santa Fe, NM
Posts: 25
thanks

Just wanted to give an update. The local hospital has taken Karin on as a charity case so we could do Soliris (Eculizumab - we are calling it E-mab :-)) and that may happen. It does not seem to address the marrow failure though when I read the papers. We are trying Papaya Leaf extract for the thrombocytopenia - just been on it 10 days but last hematologist visit the count was 17000 platelets - same as the previous week's count and the hematologist asked whether we had started the Papaya Leaf extract. Well whether it holds up or not we were able to skip a platelet transfusion. Her LDH is 630, her neutrophils are 0.75 x 10^9 / Liter, marrow cellularity is normal, her PNH clone size is 39%, so seems to be moderate AA/PNH. I have seen a couple of case studies where the PNH clone was reduced considerably after treatment for other things with Rituximab (R-mab), one for AA/PNH and the other for non-Hodgkin's lymphoma/PNH so am looking into that as a treatment.
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