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#1
Sat Mar 30, 2013, 05:57 PM
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Looking For Advice etc.
Hi my name is Paul and im new to the forums after years of reading.
I was diagnosed with severe aplastic aneamia (acute idiopathic)when I was 11 years old I am now 22, I was first treated with ATG (rabbit serum) which had no response in my body. I then received chemotherapy and a full bone marrow transplant from my 7yo sister at the time, who is apparently a full match. I slowly but surely started to recover and after about 3 months my counts were holding and I was taking cyclosporin. After about 3 years my counts began to decline and before I new it I was transfusion dependant again and looking for more options. I was given ATG for a second time (horse serum) which I had minor reactions to & no changes in my counts at all. I then was given the option to have a Stem cell transplant from my sister which I opted to do. I was sent home after it and my counts began to rise again. I was also told around that time that they beleive I didnt have enough chemo to kill all my bad cells before receiving my sisters bone marrow. After the stem cell transplant I was better for 2 years before relapsing for a third time and I have been living off transfusions for the last 3 years. I have severe iron overload (treated with exjade, desferioxamine) and low white cells also (3 lines) I recently was in a choma for a nasty infection but have made a full recovery from that. id like to know what peoples thoughts and suggestions might be for my situation. thanks in advance  . paul...
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#2
Sat Mar 30, 2013, 07:09 PM
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What was your chemo regimen for your last transplant? Did they do a chimerism test to see what percent donor cells you are?
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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#3
Sun Mar 31, 2013, 01:18 AM
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Paul,
Were you (and your sister) tested for the genetic variations of AA (Fanconi, Schwachman-Diamond, dyskeratois congenita, etc.)? A lot has changed in the diagnosis of these diseases that may warrant a retest if they were last done 11 years ago. I hope you find some answers. You have been through so much!
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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#4
Mon Apr 1, 2013, 03:54 AM
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Hi guys thanks for your reply's much appreciated, im not sure as to what my chemo regimen was? as for the percent of donor cells if i remember correctly it was around 90% my sisters cells before i had the stem cell transplant. as for the genetic variations of AA i think i was tested but cant be too sure.. these are good questions i would need to ask my hematologist.
Is anyone on these forums in a similar situation as me??? Also i have tried to get promacta as an alternate form of treatment but was denied by the hospital for funding 
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