Questions on the various treatments

[HughHC]

I was diagnosed a few years ago with low risk MDS. I had had low counts in all three areas for approximately eight years but always within a narrow range. My BMT showed no blasts and normal chromosomes. I have been told by my hematologist at JH that while i have been fairly steady I should expect deterioration perhaps within the next 6 tp 8 years. ( I am 75 now).

I frequently check out this forum for information. I read frequently the failures of certain treatments and the progression of the MFS. I am looking for positive results that some of you may have had with your treatments, I know that every medication has side effects but in addition to the adverse side effects what are the positive results that one could hope for in any of the treatment plans.

We currently live in the mid-Atlantic region but are plannin to relccate to SW Florida. I intend to reach out to Moffit after the move,

Your input as to positive results would be appreciated,

[Birgitta-A]

Hi Hugh,
You are very lucky because your MDS isn't so severe !

If your HGB is low you could try a growth factor for red blood cells for example Procrit.

If your WBCs are low you could try a growth factor for WBCs for example Neupogen.

If these drugs doesn't help you you could try Vidaza - a little more than 50 % will respond.

Another similar drug is Dacogen.

Some patients receive Revlimid or Thalidomide - about 25% will respond. I am taking Thalidomide - a very low dose - combined with Prednisone and have responded a little more than 2 years now.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006, tx dependent from dx, supportive therapy until 2010. Since then positive results with Thalidomide + Prednisone.