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questions for my doctors
In my previous posts. I was confused about whether or not i should be getting a BMT. bc my counts were actually holding for longer. And with the responses i was getting from u guys on here i realize i have no idea what i'm dealing with. And was not asking enough of the right questions. I was putting all my trust into my doctors. (who are very familiar with AA. i was referred by my hematologist.)
I ended up needing a transfusion yesterday. my hgb dropped to 7 from 8.4 and my platelets dropped to 25 from 32. All within one week. Actually faster than my new normal. I get weekly cbc's done and haven't needed a transfusion in a month! I started out with almost weekly transfusions. Which is why i was kinda confused about BMT versus other treatment. Anyway I go see my BMT and Hematologist team in Pittsburgh next Wednesday. And i wanted to know what questions I should ask. They have done a series of blood test. and 3 biopsies in my lower back and one in my chest. All "DRY TAPS". Whatever that means. So I definitely plan on having them explain all my tests to me now that I'm in a better space (mentally wise) to receive the information. ( i was a wreck when this whole thing started). All input is appreciated. U guys seem well informed. I'm trying to get on that level. At least a little. * *
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Kamara, 26, mother of 2.diagnosed AA July 2015, post BMT. currently on tacrolimus, acyclovir, diflucan, cipro. No sign of GVHD so far. |
#2
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Having absolutely no experience with the transplant route, some questions I would ask would be about:
Fertility - If having more children is important, then you need to bring that up with the doctors. Protocols - Different transplant centers use different protocols. Find out what the BMT protocol is that they are planning on using. Before you go, look into the various protocols. Some use full body radiation, reduced radiate or no radiation. GVHD - Some are using cytoxan two days post BMT to minimize GVHD. Ask them if their protocol is utilizing this. Bone marrow vs peripheral stem cells - Find out which one they will use for the transplants. One grafts better than the other while the other has less GVHD. I can't remember which is which. Is their protocol part of a clinical trial or not? That's all I can think of right now. Hopefully, other will chime in.
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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. |
#3
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Quote:
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#4
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Thank u so much Marlene
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Kamara, 26, mother of 2.diagnosed AA July 2015, post BMT. currently on tacrolimus, acyclovir, diflucan, cipro. No sign of GVHD so far. |
#5
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Thank You Neil.
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Kamara, 26, mother of 2.diagnosed AA July 2015, post BMT. currently on tacrolimus, acyclovir, diflucan, cipro. No sign of GVHD so far. |
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