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Old Fri Apr 4, 2008, 10:45 AM
dkimmel dkimmel is offline
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Join Date: Feb 2008
Location: OH
Posts: 15
I am having a difficult time trying to answer this question. It has been many years since I have had to think about it. I guess I would start by saying that I CHOSE to recieve high dose cytoxan, it was not chosen for me. When I was first diagnosed with SAA my local hematologist sent me to NIH because he heard there was a different treatment available. The treatment was high dose cytoxan. They were doing a study of ATG/cyclo vs. HD CY. After spending many hours questioning Dr. Young about the HD CY, my husband and I were very interested in learning more about HD CY. We were referred to Dr. Brodsky at Johns Hopkins, where HD CY was done exclusively. After spending many more hours questioning Dr. Brodsky about HD CY we felt convinced it was the better treatment for me. I can only speak of my own experience, so please consult educated physicians if you have questions. We felt that the risk of relapse was much lower with HD CY. We felt that the risk of second clonal diseases was much lower with HD CY. We also felt thet the quality of life that could be attained far exceeded that with ATG/ cyclo. As I understood it at the time, Atg/cyclo was also given with long term doses of prednisone. Prednisone comes with many debilitating effects. As a 21 year old, just married, mother of one, I didn't want all the side effects of prednisone, if I had a choice. Also, I understood that even if I responded to the ATG/cyclo, my blood counts would probably never be at a normal level. I didn't want to live a "half-life" (as I called it). With HD CY, I had understood at that time, that the majority of responders had achieved full remission. Even though there were not alot of people who had undergone this treatment, they seemed to have better results. I felt I had a better chance of full remission with the HD CY. I should mention that HD CY was my first and only treatment ever. Within months, I no longer required transfusions. Within the year almost all counts were normal. Two years after treatment, I had my other daughter. Almost ten years with no health issues. I have no regrets about my choice. For me, I whole-heartedly feel that HD CY gave me my life back. I am not advocating that everyone run out and choose HD CY. As I said, it was a personal choice, that apparently was the right choice for me. That doesn't mean it is the right choice for everyone. It is a far more immunosuppressive treatment, that does come with severe risks.
Sorry this post was so long, if you can believe it, I even left alot out : )
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