Hey Lisa!
I'm in North Carolina, right in the middle of the state.
Thanks for the info on your immediate post-trial success. I work largely from home, so I have nowhere near the people contact you would have in a large school (and Lord knows teenager hygiene is not always the best in the world!) I do have chickens and dogs and cats and a garden, however. If I get to do the trial, I'll ask the docs all about that sort of stuff.
I did speak with Barbara, who was great, and Olnes was very good at explaining the theory behind the treatment, which made perfect sense to me. I'm just a layperson, but I have done a lot of reading about MDS in the past six months, and it seems to me what we know call MDS is really a bunch of different ailments that, one day, will all get split apart and have different names, once folks understand it better. This Campath treatment targets one (or two or three) of those variants, I think, which makes more sense to me -- at least at the outset -- than bringing in the standard shotgun treatments when they may not apply to this particular variant.
There's a neat lecture
here -- which you may have heard in person if you went to the AAMDS conference in Seattle -- by Dr. Eilhu Estey about the fallacy of considering something a "standard treatment" that only buys most folks nine months.
NIH has all my info at this point, so now it's just a wait to see if I get a pre-screening invite.
Are you Trisomy 8? You may have mentioned that earlier; apologies if I have forgotten.
Greg