[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!