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...

What was your chemo regimen for your last transplant? Did they do a chimerism test to see what percent donor cells you are?

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!

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 :(