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AA Aplastic anemia

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Old Tue Oct 13, 2015, 08:35 PM
kmartino07 kmartino07 is offline
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Location: Farrell, PA USA
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Question 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.
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Old Thu Oct 15, 2015, 11:55 AM
Marlene Marlene is offline
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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 January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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Old Thu Oct 15, 2015, 03:45 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Marlene View Post
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.
These are advantages of stem cell transplants over bone marrow transplants:
  • A better chance of a successful graft.
  • A typically shorter recovery time.
  • The stem cell harvest from the donor is likely to produce more cells.
  • The donor does not require surgery.
These are advantages of bone marrow transplants over stem cell transplants:
  • A better chance to avoid chronic graft-versus-host disease (GVHD).
  • The donor does not require injections of growth factor drugs.
Some donors offer to donate only one way or the other. If they are willing to donate either way, then the recipient and his or her doctor get to make the choice.
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Old Thu Oct 15, 2015, 09:35 PM
kmartino07 kmartino07 is offline
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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.
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Old Thu Oct 15, 2015, 09:36 PM
kmartino07 kmartino07 is offline
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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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