[Greg H]

Hey Nadia!

I did the Campath trial at NIH. It didn't work for me (or, more precisely, it probably did produce a response, until abnormally short telomeres caused a relapse). Others on marrowforums have done it with success.

Neil's point about an institutional bias toward clinical trials at NIH may be correct, though that's not the vibe I've gotten from the folks I worked with there, who all seemed pretty genuinely concerned with figuring out what would be the best therapy for my particular case.

Besides, with a platelet count as low as yours, I'd be pretty wary of Revlimid, Vidaza, or Dacogen, because they are all quite likely to knock your platelets down even further, at least temporarily. (Of course, Campath will probably cause a temporary dip in all your counts as well. I'm not sure whether ATG does the same; maybe Hopeful can fill us in on that.)

But a lot depends on your diagnosis. If you are low-risk or INT-1 (which it sounds like is the case), neither Vidaza nor Dacogen makes much sense, because they work best in higher risk patients with excess blasts. If you are higher risk and have excess blasts, on the other hand, those would make more sense.

If you are deletion 5q, you definitely want to consider Revlimid, because the response rate is very, very high. If you're not deletion 5q, you've got a 25-30% chance of response (and will have to either do a trial or get approval for an off-label use).

If you have hypocellular marrow and a couple of the other indicators that suggest a higher probability of response to immunosuppression (HLA-DR15+, PNH clone, Trisomy 8), I'm not sure why you'd try Revlimid (a shot in the dark) instead of immunosuppression.

I'd definitely go with Campath before I'd go with ATG (My opinion based on a lot of study, but I'm not a doc, and your mileage may vary). Hopeful is right that Campath will knock your lymphocytes down more thoroughly, but, as a result, you won't need to follow it up with cyclosporine, which, based on my reading here, appears to have a lot of nasty side effects and "weaning" or "tapering" issues. Unless you have a job or vocation that exposes you to a bunch of viruses, the risk of infection post-Campath is pretty well taken care of by the Valtrex and Pentamidine treatments. ATG by itself is not nearly as effective as ATG plus cyclosporine, and, for MDS, I'd do the Campath instead of that combo. (AA is a different story; the NIH hasn't had much luck with Campath for AA.)

I hope you won't think we are all a bunch of busybodies asking about your counts and BMB results; but we've all been down this road, and we know that the devil is in the details with this disease. Because, in fact, MDS is not a disease, but a bunch of diseases clustered together, and the details are what tell you which of those variants you are most likely to have. And the holy grail of MDS research is figuring out how to tease apart all this different kinds of MDS and figure out how to treat them.

If you have any questions at all about the details of what it's like to participate in the Campath trial, feel free to give me a shout here, in a PM, or off-list.

Take care!

Greg