[alyse]

Hi:

If anyone wants to read about the Campath trial, I have submitted an exhaustive narrative of my experience at NIH in August 2010 which should be somewhere on this site. I have AA not MDS so I do not know if my experience applies here. I was in a trial for relapsed and refractory A.A. patients. It appears to be the identical treatment for MDS.

After my diagnosis in Nov. 2008, I had ATG/Cyclosporine at NY Presbyterian Hospital in New York City. I had a rapid, terrific response in terms of blood cell counts, but I felt miserably sick for nearly six months after treatment. I also relapsed within a month of being taken off cyclosporine (I was on it for 13 months). Following my relapse, I was transfusion dependent (platelets and red) for more than six months.

Compared with the reactions I had to ATG (including returning to the hospital for four days of high dose steriods due to serum sickness which caused a rash over my entire body; and a fungus in my esophagus which made me nauseated for months),Campath was like getting a virus for a few days. Also being at NIH was an amazing experience. (Again, see my report on the experience.) It did take longer for Campath to kick in but it was worth it.

Today, 15 months post treatment my hemoglobin is 12.5; white is 2.9; platelets are 100,000 and neutrophils are 1780. I am going to Vietnam and Cambodia in February on vacation. I know how lucky I am and I am extremely thankful that I had the opportunity to have Campath rather than another round of ATG. Of course, I fear relapse every day but try not to dwell on it.

Good luck no matter what treatment (or non treatment) you choose. My only suggestion to you is not to fear Campath if the wise doctors at NIH recommend it.