[Jbsx19]

Debbie,

Your Welcome,of course..sorry about all my spelling errors,..I'm at work and trying to rush. Anyway,..I'm just surprised that you are not seeing a Hemotologist who has a Cell-Dyn 1700 (CBC Machine) right in his office. My lab appts at mine take about 10 min. In and out unless I have to see him for a physical (check my spleen and lymph nodes etc...).I can help you sort out side effects and such. I certainly didn't mean to make it sound that I had an easy time of it. Plenty of side effects,sent me into early menopause, etc...

There is no cure for this, you can be put into remission from the drug therapy. Which is considered a fix not a cure. The only cure (so to speak) is a BMT. It's just semantics,..I can live with being "fixed" as well as being "cured" which is why I opted for ATG rather than the transplant.

I am currently in 3 protocols at NIH, the initial ATG treatment, a genetic research one (mine is not genetic ,only 20% of AA is) but they want to do further research on my genes and why I recovered so quickly and completely, and a third to see if after remission they can harvest enough stem cells to freeze (free forever at NIH) in case you come out of remission they can do a stem cell transplant with your own cells. Cool,huh?? I however did not produce enough of those type34 cells at one year out. They told me to wait awhile and try again. I'm debating...It's pretty involved and I have to commit to at least a week up in Bethesda to do it. 5 days of Neupogin shots to up the stem cell production and then in patient for the stem cell harvesting since I need a catheter in my groin. My arm veins were not liked by the infusion people.Not a fun time but well worth the effort ,I think to have your own stem cells frozen forever. We'll see.....
Hope you are considering all your options..... Take care,..Judi