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Old Wed Apr 2, 2008, 12:25 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,407
Interesting that your B12 and folate were low at one point. Hopefully, they are continuing to monitor and treat this. There's a reason why it was low and unless that has been corrected, you need to keep on top of it. I will just tell you that it's very important to keep your B12 levels >500. This is very easy through dietary supplements and B12 is non-toxic.

I trust they checked your Iron also?

On the treatments.....ATG/Cyclosporine is the the typical protocol. Everyone responds to it differently so you really cannot predict how you will react or how long it will take for a response. Some repond within 3 -4 months but it can take up to year. Some need a second treatment.
If you get a chance, you may want to contact Dr. Young at NIH for a second opinion and get info on their clinical trials. They focus on ATG as the first line of treatment. A second option is High Dose Cytoxan at Johns Hopkins with Dr. Brodsky. A third is a BMT since you're under 40.

The actual treatment happens over a short period of time (less than a week). More time is spent waiting for a response and undergoing any needed supportive treatments during that time.

It is very overwhelming and scarey, but remember, lots of people with AA are doing well and leading fairly normal lives.
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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