This is what my son has that caused his AML. They should check out the MDS Foundation and go to a center that deals with MDS alot. Not sure what is available in NC since I am CA, but there are good resources on the MDS website.


Karen

Just call it MDS and don't worry about the spelling -- that's what everyone else does. My onc says I still have it even though I am a 5.5 year survivor (chemo only). The dysplasia part of it has to do with the blood cells bening mis-shaped -- it can be seen under a microscope to the Dx is conclusive. The difference between a Dx of MDS and AML is the percentage of blasts in the blood -- blasts are immature blood cells who refuse to grow up and cause a lot of trouble taking up space that should go to useful blood cells. Over 30% is AML, less than 20% is MDS, and in between could go either way. Usually when MDS is detected but not AML, the patient is watched closely to make sure the % blasts are not increasing over time. It is possible and many people do live out their lives with MDS -- a lot of them never know they have it.

Alternatively your onc might decide it is best to be proactive and go ahead and treat it. In that case it might be a light chemo regimen for the rest of your life. Or it sounds like in your friend's case they could be going right to a transplant. My guess is that they are figuring that something in the prostrate cancer treatment triggered it and they are being more aggressive.

Hope this answered your questions, but if not, please send some more -- if I cannot answer them someone else probably can. Cannot argue with messed up shapes under a microscope, but I am living proof that it does not have to turn into AML (again) -- it definitely did the first time. Thanks -- daveB

Once again, great insights here --- so much clearer than Mr. Google.
I will share. Thanks
Twilight