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Old Sat Jul 28, 2012, 03:36 AM
NLJabbari NLJabbari is offline
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Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hi Marlene, I do have John Hopkins in the back of my mind and I'm currently researching options. I'm following a couple of BMT patient's journals to compare protocols, outcomes, etc... I recalled reading that you had mentioned something about JH and the use of Cytoxin post BMT to prevent GVHD. I meant to look deeper into that, but as you can imagine this all becomes very overwhelming and sometimes I just have to back off. I keep in mind that we are fortunate that things are stable for the time being, but of course that all could change quickly.

Stanford has offered us (Yashar) to participate in a study: (Fludarabine-based Conditioning for Allogeneic Marrow Transplantation From HLA-Compatible Unrelated Donors in SAA) Preconditioning drugs: Fludarabine, Cyclophosphamide for 1 or 2 days TBD, Antithymocyte, plus 1 day full body irradiation.
I'm not sure why I get this gut-feeling that I'm not "feeling" this protocol. It makes me very uneasy...of course we don't have to agree to participate, but I'm not really sure what the standard protocol entails otherwise. I really do have to either call them back to talk to someone or make another appointment to ask more questions. Our initial appointment with the transplant doctor didn't go quite as well as I'd hoped. It seems that even though I'm officially Yashar's "Medical Agent" as he has signed an Advance Directive stating that he wants all "medical discussions" to be discussed with me. Instead, the doctors insist on talking with him! Honestly, Yashar really doesn't want to handle this himself and I don't blame him. Seems like all discussions go in one ear and out the other. It's just how he copes, I guess. Anyway, the doctor didn't seem to like that I was doing all the questioning and even asked me to refrain from questions until she was completely done explaining what she had to explain (BMT stuff). We left the appointment feeling that we still had questions to ask...the "standard" protocol was the main question I didn't have answered.

BTW, is Cytoxan and Cyclophosphamide the same drug? Thanks!
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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