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AA Aplastic anemia

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Old Thu Aug 8, 2013, 08:26 AM
Lucky Lucky is offline
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Chemo drug used for AA (without BMT)

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.
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Old Thu Aug 8, 2013, 10:26 AM
curlygirl curlygirl is offline
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Hi! My son got ATG here in the States and while he was in the ICU getting his ATG the nurses refered to his ATG as "chemotherapy." It is a chemotherapy product but a specific one in that it only destroys T cell lymphocytes. We also went to Johns Hopkins because in our tristate area all HLA typing is done at Hopkins. When his brother was not an HLA match they discussed their high dose cyclophosphomide with us. We declined to do it in favor of ATG and cyclosporine but I specifically asked if my son would be infertile after treatment and they said no. Then the nurse showed us a picture on a bulliten board with a man who had been treated years earlier with his recently born son. So based on the "chemotherapy" label, George could have received ATG or cyclophophamide, but neither should impact his fertility. I hope this makes you feel better!

Last edited by curlygirl : Thu Aug 8, 2013 at 10:39 AM. Reason: typos on kindle
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Old Thu Aug 8, 2013, 10:38 AM
Lucky Lucky is offline
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Thanks a lot!

Thanks a lot! yes, it does make me feel better. but have you heard of any "5-year critical period"? I'm not sure what "5-year period" it is? from my research, I can see that there is no "100% cure" for SAA, it's like you always have the chance of getting better or worse, it has its ups and downs.

I did a massive research on Cyclophosphamide (Cytoxan) and read that it is one of the chemo drugs with highest probability of causing temporary or permanent infertility. But what you said makes me feel better, since I never heard of ATG causing infertility and as you're saying, even at John Hopkins doctors said Cytoxan chemo would not cause the patient to be infertile. Thanks!
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Old Thu Aug 8, 2013, 11:11 AM
curlygirl curlygirl is offline
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I haven't heard of a five year critical period. Hopefully another member can chime in. Take care!
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Old Thu Aug 8, 2013, 01:08 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by curlygirl View Post
I haven't heard of a five year critical period. Hopefully another member can chime in. Take care!
If there's no evidence of disease 5 years after remission Dr's consider it a cure. Hope that helps.
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Old Thu Aug 8, 2013, 01:15 PM
Marlene Marlene is offline
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Our doc at Hopkins says they cannot use the word "cure" with either ATG or High Dose Cytoxan. The best they can say is "durable remission" even after 10 years.
__________________
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 Aug 8, 2013, 01:19 PM
SAA Mom SAA Mom is offline
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Our doctors have talked about using Campath if my son has a partial response to ATG/cyclosporine. Campath is a chemotherapy agent.
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Old Fri Aug 9, 2013, 02:04 AM
Lucky Lucky is offline
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Thank you all

Thank you all for your responses.

Can any of you tell me that you know somebody who used to have SAA, underwent immunosupressive therapy, including chemo (i'm not sure whether it was ATG or Cytoxan, or Campath) and after certain amount of time, they managed to have children? I know girls do, I've read stories on this forum where girls tell that they got pregnant and have kids. I was wondering if it's possible for boys to father a child after ATG/Cytoxan or even BMT?

and also, is it possible that doctors in Germany could have used methodology developed at John Hopkins (in the States), I mean 4-day Cytoxan treatment? Have you heard anything like this.


Thanks a lot!
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