[Debbie W]

Hi Cheri,

The link from Birgitta shows this is a big study and the study chair is Dr. List at Moffitt, sorry I cannot comment on the trial and know there are others here who are better able to do so.

Dr. Klimek was my husband's doctor through two treatments of Dacogen and then induction and she was very helpful. Seeking another opinion at Sloan or another large center sounds like it would be a good idea.

Debbie

Originally Posted by cheri

Thanks Birgitta, for the link.....

My Dr is confused where to go......let's just say it's pretty much my call at this point. He's open to virtually anything. And I could hunt around for the world expert in MDS and the treatment options still remain the same.. BMT, Vidaza, Dagocen, Revlimid...I'm not interested or able to chase around with a lot of clinical trials.

I am currently still running a fever and until this clears up, I am just doing the transfusions and Neupogen. I am now also on Valkade because we think there is something viral going on....and Bactrim as well for prevention of bacterial infections. My #'s are way to low to tolerate any big hits!

I did Vidaza for 7 cycles with no appreciable results, other than I am still here!
Moving forward, my options are Dacogen (which I need to research) and maybe Revlimid, if DR can get it approved. I wonder if the combo w/Procrit willl help...(we are testing my epo levels this week, to see if it will even work.) But I really love your suggestion about adding the dexamethasone....
The only thing I don't know is what the dosages should be for Revlimid, Dexa and Aranesp/Procrit........to be effective. I am not 5q- so there may be a battle with insurance. I may suggest the thalidomide if all else fails.
That could be an interesting cocktail...I'm willing to try my own clinical trial!
And what the heck---nobody seems to be able to pinpoint the actual treatment that works for the majority.

My only question is if I should try the Dacogen first...?
Feedback welcome, ya'll!