[Lucky]

Hello,

I know somebody who has SAA, developed in 2008. Let's call him George.

So, George developed SAA in 2008 and he went for treatment in Germany (I'm not sure which city or hospital he took the treatment). I know that he was receiving transfusions and immunosuppressive drugs. Also, I know that he went through chemo, but it was not a pre-BMT chemo, since he did not have matching sibling and did not do bone marrow transplantation.

I have not asked which drugs he was using and basically, I can not ask it. I did research on my own and found out that the options for immunosuppressive drugs is: ATG together with cyclosporine. And I also found that the chemo drug used for treating SAA is Cyclophosphamide (Cytoxan). While researching, I found that chemo is generally used if a patient undergoes bone marrow transplantation. But George did not have BMT, he had chemo only. On this forum, I found that John Hopkins Medicine Center uses Cytoxan as a 4-day chemo treatment for SAA, without having bone marrow or stem cell transplantation. But since George went to Germany for treatment and John Hopkins is located in the states, I am confused whether he went under same treatment developed at John Hopkins (I mean 4-day high doze Cytoxan).

Can you please tell me if there are chemo drugs used treating SAA without BMT, other than Cytoxan? Or Cyclophosphamide (Cytoxan) is the only chemo drug used while treating SAA?

Also, even if George did not go to the states and he went to Germany, is there a chance that his doctor would use same method developed at John Hopkins?

I am basically trying to research the medications he underwent, to see the long-term effects or side effects of those medications. I also wonder how long it takes for stable remission after the treatment. I know that he got off the drugs/transfusions in 2010. Again, I have not asked which drug he was taking, but from research I found that probably it would have been cyclosporine. I also know that he started to kinda recover (obviously, he stopped taking the medication) in late 2010. George said that he has to wait 5 more years to see if he actually recovered, because the critical period is 5 years. If the disease returns (relapses) within coming 5 years, it will be more severe and chances will be lower. I'm not sure which 5-year period he meant, because from my research I could not find any "critical 5-year" period. I only found that Cytoxan may cause short-term/permanent infertility which may be recovered in 1-4 years and if after 4 years it's not recovered, than probably the patient will stay infertile. Could it be that "critical 5-year" period? or does SAA remission patients have some "5-year" period which you have to overcome in order to be sure that you are in stable remission.

I only know his thrombotic counts (his bone morrow was/is not producing enough thrombotic. Last summer his counts were above 150, this summer its around 110. I also know he goes to dermatologist and urologist for checkups.


Thank you all for your response. I know, I don't know stuff myself and I have too many questions, and I am basically asking questions about my questions, but if you could share your stories, or something you might think i may find helpful, I would appreciate it a lot.