Hi fellow MDS/AML colleagues,
A BMB 7/12 showed lower blasts
, 21% down from 30% in 9/11. Even though I'm in AML (by definition) my counts are stable and the blasts have dropped. I have a fair energy level.
I've been on Nplate for platelets continuously for 1 year and yet the blasts are reduced. Nplate has controlled my platelets, keeping them above 50.
The low dose Dacogen, 1 injection/week at 10-15 mg, may be controlling the MDS/AML and keeping the blasts under control.
I'm continuing on Thalidomide at 75mg/day average.
I've had almost a year of very good counts, Hgb 9.8-11.4, platelets 50-100. The ANC is low, running 200-600 (.2 to .6); but with care I've avoided illness. My wife and I are OCD about cleaning tables, never touching door knobs or faucets in public places; so far it has worked
.
My response has been very good and unusual for starting at RAEB-1 almost 9 years ago. I attribute it to finding great doctors who will try unusual treatments and personally having a large part in the treatment choices. I've talked to many patients who have not been able to find doctors who will deviate from the normal drug protocols, in my case I would not have survived this long if the normal treatments were used. The AA/MDS patient conferences have helped a lot, I would advise all patients and caregivers to attend.
Always stay positive and never give up, don't forget the power of prayer.