[Greg H]

Hey Catherine!

Yep, I'm beginning to think that the NIH and I were made for each other: we both have way too many questions.

And I've discovered a new term for the "story-based" treatments and trials that I find most appealing: "rationally-designed." Evidently, that's code for "We saw something interesting, we developed some hypotheses, we did a bunch of tests in the lab, we came up with some more questions, more lab work suggested this might be a treatment angle, so now we're going to check that out with a clinical trial."

The other way of doing business is more like: "We've got this great drug that's working for multiple myeloma . . . let's try it on some MDS patients!"

Those are both caricatures, of course. There are plenty of really smart folks out there in the pharmaceutical companies looking for new uses for their drugs. And, in the end, if a drug works, it works.

But I do have a weakness for the "rationally-designed" approach.

It does seem like it's all good news-bad news in this bone marrow failure business. But my experience just shows how important it is to keep looking for answers and working with a variety of docs. My local hematologist told me he would never have thought to check for a copper deficiency; it was only my university-based transplant consult who came up with that angle. And my local doc (and the transplant doc) was highly skeptical of immunosuppressant therapy, until I gave him one of Dr. Sloand's last articles and my HLA profile from my university doc.

Now, none of that has panned out as I had hoped, but it all made sense. And this short telomere thing makes sense. As Dr. Olnes told me in an email this morning, MDSers with tiny telomeres are prone to relapse, and that may explain why my reticulocytes bounced back so strongly immediately after Campath, and then fizzled.

I'm still waiting to hear from the research nurse at NIH to set up a screening appointment for the Danazol trial, but the more I read about telomeres, the more it makes sense to give this a shot. I'm still not clear on exactly how common short telomeres are amongst MDSers; I'm probably going to be driving some NIH docs nuts with questions.

Hope you and Bruce are doing well. Got plenty of firewood laid away for the winter?

Take care!

Greg