[Susan L]

Originally Posted by Diver down

Hi,
My husband 57 yo, avid cyclist and scuba diver always healthy until now was hospitalized with pancytopenia fever and pneumonia this month and diagnosed with high risk MDS RAEB 2 with unfavorable complex cytogenetics. Stem cell transplant advised and we are looking into centers in our state of Florida as well as considering Sloan and Dana Farber though travveling away from home would be complicated it is possible. Local center has a lot of experience with autologous transplant but only recent limited experience in the last 2 years with allogeneic transplant. Bridge therapy was also recommend but it seems there is no consensus as to what is best - and range from Dacogen 5 day cycles , Vidaza 5 days off 2 and on 2, or Vidaza 5 d followed by Revlimid daily for 21 d (experimental ) or vidaza 7 d; No transfusions yet but baseline counts now ANC 600plat 57K and Hgb 8.4. and just received Aranesp. Overwhelmed by treatment options. Also encountering debate on recommendations for preventative antibiotics and antivirals while on Vidaza or Dacogen. No sibling candidate so has to be unrelated donor. This is all new and overwhelming. Glad to know the Marrow forum is out there for support. All thoughts from the group welcome.

DD

I am sending you all the best that can be given. I am 58 and have been with the horrible disease for yrs. This site is the best for info to help you out - Check the sites give for treatment centers as it does make a difference. In the yrs that have past so much success has happened in treatment and transplants for us. I have no family and have recently been told that a 10 out 10 match has been found and I will be starting my journey. I know you are scared and confused with it all but there is help out there - do your research and get a doctor that knows the disease. Best to you both. Susan