Laura,
You are so right on the "experts." There is a great lecture
here from a conference at the Fred Hutchinson Cancer Research Center up in Seattle. Actually, a lot of the presentations on
that page are worthwhile, but the short one by Dr. Eilhu Estey is great for the perspective it offers on "Standard" treatments.
His illustration is a 65 year-old person with high risk MDS. Normally, without MDS, this 65 year-old has 20 more years to live. With untreated high risk MDS, he's likely to die at 66, eliminating 95% of his standard life expectancy. If he takes the "standard course of therapy," i.e., Vidaza, he gets to live until 67, and only loses 90% of his life expectancy. Estey make the point that a year, in this case, is better than nothing -- but there's no way that the 9.5 months gained on average for Vidaza justifies calling it a "standard course of treatment." It makes sense, in that scenario, that some folks opt for non-standard treatment in clinical trials. Like me, thinking about Campath!
Anyhow, it makes sense that the 8-month window between your ATG and transplant prep meant the ATG was a positive instead of a negative. I'm relatively low-risk, so I think my doc is more worried about a scenario in which I do ATG now, follow with cyclosporine, that works for a year or so, then I do a couple years of Vidaza, then I come for a transplant. The prior exposure to ATG across that longer window makes it less effective the second time around. At least that's her thinking.
My transplant doc is at Wake Forest University. They are mostly into non-myeloablative (reduced intensity) transplants, particularly for the over-50 set. But my Doc has experience with the big-gun transplants as well, having spent some years at Stanford.
Greg