Thanks Katail - I really appreciate your good thoughts and support.
Hi Dan - I meant pre-transplant Vidaza - I understand the theory that Vidaza may work differently with the new marrow but I've been skeptical since it seemed like it would need to work on any residual marrow and not the healthy new stuff- your results are encouraging. We had talked about using it as a maintenance treatment but my platelets were always low and things were looking good so we ruled it out - but that was before the biopsy.
Did they start treating you based on the one bad cell or did other symptoms/signs also show up?
My hematologist says she sees this type of fluctuation "all the time" and it doesn't necessarily mean anything - but I'm not sure if she's just trying to make me feel better. I guess things were going too smoothly.
I had started getting back into the swing of a somewhat normal life - getting aggravated about work stuff etc - the biopsy puts things back into perspective and helps re-focus me on whats really important. A wake up call of sorts - a warning against complacency.
Thanks again for your support and insights.
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015