Hi Bergit!
There are at least four of us on the list that have tried the Campath at NIH. You've already met Lisa Z.
Alyse Booth had Campath for AA. You can read about her experience
here and
http://forums.marrowforums.org/showthread.php?t=1943.
I've just had my six month follow-up after Campath for MDS. You can read about my experience
here and at my blog
here (I post the same thing both places.)
At the moment, I'm a "non-responder," but Dr.Olnes is still hopeful I'll respond (immunosuppression takes a while).
What they have found at NIH as markers of likely response to immunosuppression are younger age (under 60) and the presence of the HLA-DR15 marker. Other studies have found hypocellular marrow is also a predictor of response. But some older folks without tese traits have responded as well.
NIH treats folks from all over the world in their clinical trials. You might have to pay for most of your travel expenses, but the treatment, as I understand it, is at no charge.
Another helpful person to contact is the research nurse on the trial, Barbara Weinstein, email:
weinsbar@mail.nih.gov. Phone: 301-594-4180.
You can find a description of the clinical trial
here. And I wrote something about the theory behind the trial
here.
My understanding of the advantage of Campath over ATG (theoretically) is that it more closely targets the CD-4 & CD-8 T-cells that are thought to be the bad guys in this type of MDS. It suppresses those T-Cells more completely and for a longer time than ATG. So, for most folks, no follow-up course of cyclosporin is necessary (though that is an option in the trial for people who have responded to Campath and then relapsed.) NIH has done solid retrospective research that shows neither ATG nor Cyclosporine is particularly effective alone; they work better together when treating MDS. They believe Campath is going to be even more effective.
I've probably overloaded you with info at this point, but do ask any questions that this stuff raises for you and I'll try to help.
Take care!
Greg