[freedom99]

Hi Gipper;
Initially there was no treatment offered until the first BMB came back with the 5q del syndrome. Revlimid works very well with patients who have 5qdel. Revlimid was set up to be ordered and payment uptions were set up. I did some research on the Revlimid site and found that the standard was that Revlimid should be discontinued when PLTS drop below 50. HC's(my wife)PLTs were at 5 and it became a concern to me. The doctor decided to do another BMP and found that the blasts had increased and together with an additional genetic abnormality indicated that Revlimid wouldn't touch it and proposed Vidaza.
Yesterday I came across this alloimmunization with platelet transfusion. This would be the refractory condition you are talking about. It is a big concern since my wife (HC) is getting 5 units of platelets 2x a week for the last 5 months and 1x a week 5 months prior to that.
You are right about the age factor. HC does have diabetes, irritable bowl syndrome and trouble walking. The major medical problems have a direct impact upon the survival rate.
Thankyou so much for giving me some more information. Sometimes the information that's out there becomes just too much and I have to switch venues for a while. Overall though it helps a lot to be informed when I talk to the doctor and for making the decisions the doctor makes me make.
All the best in your decision for a min-transplant. It does look like you have some good doctors on your case and that does help a lot. Still in all of this we are directed to make the final decision. I'm thinking your family should be your major help since with family one is generally connected at the hip know each other in a special way.
Thankyou Again