Myelodysplasia Support Group

My mom was recently diagnosed with MDS, 5-q Deletion at Intermediate Stage 1. Her doctors recommend Revlimid as a first course of treatment. They seem very upbeat about the success of Revlimid and do not like to discuss survival or prognosis, only that without treatment it will progress into AML in less than 1 year.

She started taking the drug 3 weeks ago and she broke out in rash and fingers started to turn purple but she made it through the 21 days. She is now on a rest period of 7 days but was told that her white blood cell counts were low and not to go anywhere near sick people and her hemoglobin was 8.8. They did want to give her a transfusion today as they wanted to try to wait a week and gauge if the Revlimid may be making room for the healthy cells to grow.

I just feel a bit in the dark. What are good blood levels? Is Revlimid really as good as her doctors say? What is the prognosis/survival rate for MDS Intermediate Stage 1 and 5-q Deletion? Prior to diagnosis/treatment, she received 3 blood transfusions over a 4 month period.

I lost my dad a few years ago to pancreatic cancer and he died within 3 months of diagnosis and the doctors also did not like to discuss prognosis or survival until he was in his last days and I wish we knew beforehand.

Many thanks,

T--
Posted on 10/29/09, 05:10 pm