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Old Sat Apr 26, 2008, 11:53 AM
Lynn del Lynn del is offline
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Join Date: Apr 2008
Location: Port Chester, New York, USA
Posts: 43
Quote:
Originally Posted by dkimmel View Post
Sorry about the confusion, Cytoxan is the name brand for cyclophosphamide, I am a lazy typist...I was diagnosed with SAA in March "99. I lived in the DC metro area at the time. I went to both NIH and Hopkins before deciding on my treatment. My husband and I met both Dr. Young(NIH) and Dr. Brodsky(Hopkins). We chose to go with the treatment at Hopkins. Our reasons are kinda long so if you want to know just ask. The treatment at Hopkins was Cytoxan only, no cyclosporine. Followed up with daily doses of Neupogen. It was not an easy treatment, and my hair did fall out. Small price to pay for my quality of life since my recovery. I was treated in early May, and had shown my first sign of response on July 6 '99. I know because I saved the lab slip. It took about a year or so for everything to really come up. But all three cell lines made a coplete recovery. Cytoxan was my first line of treatment, I did not have ATG prior. I have been in remission for about 9 years now. Although recently I have encountered a little "hiccup". My counts dropped quite low in Dec. "07 and have remained low. I have had a bone marrow biopsy at Hopkins, I am not relapsing and do not appear to have any other issues. It has been explained to me that certain virus' may suppress my immune system more. My doctor believes that they will come back up, it will just take some time. In 9 years this is the first real issue I've had with reguard to SAA and its treatment. There are no guarantees with any treatment, but my experience has been a good one. I strongly suggest consulting with Dr. Brodsky before you proceed with any treatment. He is a GREAT doctor who will give you all the time you need during a phone consult, or in person. I am not sure if he would be the person who treats pediatric patients but he would be happy to point you in the right direction. Please feel free to send me an e-mail or private message if you have any questions or would like Hopkins contact info.
Hi, I am really interested in getting in touch with Dr. Brodsky. My e-mail is del1134@yahoo.com, I have had AA since 1998 and had 1 ATG in 1998, since, I have had only blood transfusions which are getting closer and closer.
Thank s for any help you can provide. Lynn
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