Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > AA
Register FAQ Search Today's Posts Mark Forums Read

AA Aplastic anemia

Reply
 
Thread Tools Search this Thread
  #1  
Old Tue Oct 13, 2015, 08:35 PM
kmartino07 kmartino07 is offline
Member
 
Join Date: Sep 2015
Location: Farrell, PA USA
Posts: 26
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.
*
*
__________________
Kamara, 26, mother of 2.diagnosed AA July 2015, post BMT. currently on tacrolimus, acyclovir, diflucan, cipro. No sign of GVHD so far.
Reply With Quote
  #2  
Old Thu Oct 15, 2015, 11:55 AM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
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.
__________________
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.
Reply With Quote
  #3  
Old Thu Oct 15, 2015, 03:45 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,556
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.
Reply With Quote
  #4  
Old Thu Oct 15, 2015, 09:35 PM
kmartino07 kmartino07 is offline
Member
 
Join Date: Sep 2015
Location: Farrell, PA USA
Posts: 26
Thank u so much Marlene
__________________
Kamara, 26, mother of 2.diagnosed AA July 2015, post BMT. currently on tacrolimus, acyclovir, diflucan, cipro. No sign of GVHD so far.
Reply With Quote
  #5  
Old Thu Oct 15, 2015, 09:36 PM
kmartino07 kmartino07 is offline
Member
 
Join Date: Sep 2015
Location: Farrell, PA USA
Posts: 26
Thank You Neil.
__________________
Kamara, 26, mother of 2.diagnosed AA July 2015, post BMT. currently on tacrolimus, acyclovir, diflucan, cipro. No sign of GVHD so far.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Questions, Questions, Questions!! MrHandy2013 MDS 2 Sun May 26, 2013 08:35 PM
6 year old son newly dignosed... Questions Bolinger Pediatrics 15 Wed May 8, 2013 04:59 PM
dealing with doctors! Grifmat Questions and Answers 8 Thu Apr 18, 2013 09:17 AM
Need help - Decitabine (Dacogen) questions Al's Wife MDS 21 Fri Aug 24, 2012 03:38 PM
Newbie says hi, has questions! jennie MDS 8 Wed Oct 10, 2007 04:45 PM


All times are GMT -4. The time now is 06:04 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org