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Hi, Fordad,
I am so sorry to hear about your dad's BMB results and resultant AML diagnosis. It is the course that everyone fears, and it is not a fun road to be on!
I, too, feel that doctors sort of give up on the older patients who are not believed to be eligible for transplants or more aggressive treatments. I know the majority of research indicates that older patients (especially those over 80) do not tolerate or respond long-term to these treatments, but it is hard not to have any choices when you have a loved one in excellent health except for the MDS and who might benefit from another treatment. We also looked into clinical trials, and though I honestly could not find anything that I thought would be reasonable to try, my dad's doctor made it sound like it would be too much work on his part to get my dad into anything if my dad was interested.
As far as how fast does this disease progress, well, it seems that it can be slow or very fast. My dad had a full physical in September 2013 in which his blood values where well within the normal range. By December 2013 he was definitely showing signs of anemia and low platelets and by March 2014 he was advanced enough to be diagnosed with MDS RAEB II with marrow blasts at 18%. I do believe the Vidaza stopped the progression of the disease for about a year, but once it started progressing again, it went very rapidly. I am really hoping your dad's progression from this point will be much more gradual.
Also, I wouldn't worry too much about iron overload. We constantly worried about it, but my dad's hemotologist was not concerned as my dad had no symptoms. He had about 65 RBC transfusions during the course of his disease and never had any iron overload symptoms and was never treated with any medications for iron overload.
Please, know that I am hoping and praying for your and your family and wishing you the best. I hope you can find a doctor willing to work with you or that you can find peace if your dad has decided that he is done with treatments. It was a little easier for my dad because my mom had passed away many years ago, and he missed her and was ready to see her again.
Sending hugs your way!
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