[Greg H]

Originally Posted by tytd

Hi Greg,
Just wondered if you'd been to any of the tertiary care clinics in NC like Duke, Wake Forest, or Chapel Hill? Apparently there is a one day conference in Durham, NC this fall sponsored by one of the MDS foundations. The Seattle conference posted on AAMDS website that you recommended was very good. The speaker from MD Anderson was a little depressing, though. He indicated that they just don't yet understand enough about the biology of the MDS cell to figure out good treatments yet. From what I've heard you have a better chance of responding to immunosuppressive therapy like Campath if you have a hypocellular bone marrow biopsy and also it may help if you are HLADR15 positive. I'm happy for patients like Lisa who have had good responses. What are your blood counts? Good luck, a neighbor in SC

Hey TYTD!
The depressing guy was probably Dr. Estey. He was definitely not pulling any punches in his lecture. Oddly, though, I took some hope from that -- that I'm not nuts for thinking about pursuing a non-standard therapy that seems to fit my disease profile better. If the new standard treatments -- Vidaza and Dacogen -- help a minority of folks and only extend life for an average of a few months, maybe it makes sense for some folks to try something else.

My transplant doc is up at Wake Forest. I'm very impressed with the folks at the Cancer Center there.

My Hg was 8.9 at last check, three weeks post transfusion; I have a CBC tomorrow and will likely need two units on Friday. WBC hovers around 3, though my Wake Forest doc is always more interested in neutrophils. Mine are always right at the bottom end of normal at 1.6 or 1.7. My platelets were up to 83 last time, a jump back up from the high 60s to where they were in May.

Take care!

Greg