I was just diagnosed 3 weeks ago with MDS, RAEB-1. This was a change from a diagnosis of apalstic anemia 3 months ago. For 1 year i have had low counts all around...red, white, platelets.
I had my first transfusion of packed red blood cells Sept. 19, and my 2nd transfusion on 11/8.
My white count fluctuates in the low to mid 3's.
My hemoglobin was 6.3 for my first transfusion, and 7.0 for my 2nd.
My platelets fluctuate between the high 40's and low 50's.
I was fine w/the Aplastic Anemia diagnosis. Basically told to "wait and watch". Now, of course, much more concern. I am having another biopsy tomorrow to confirm the last one....make sure it was not a "fluke".
this is my 5th BMB in less than 1 year. I'm getting used to them, but in truth, dread them.
I am not sure what path to take from here. Treatment or BMT...I do have an exact match sibling......so many things to consider it is overwhelming....literature says only CURE is BMT, but there are many risks like GVHD, which you can die from. Treatments may help you for number of years, but sounds like MDS will ultimately return. I am turning 54 in 2 months. Do I just go for the BMT or try treatment for a while. When will insurance say I'm too old for BMT....don't want to miss that window....etc., etc.
anyone recently diagnosed, or who remembers all the confusion
at the start, I'd love to hear from you. Also survivors!!!!!
Thanks in Advance!