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Myelodysplastic Syndrome Community
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Newly diagnosed

I have just been diagnosed with MDS with RCMD and I am currently at low risk for progression to AML.  I am 72 years old and lead a fairly active life with frequent travel and good exercise habits.  I was diagnosed with esophageal cancer in 2011 early enough to have all evidence of the disease being removed without chemo or radiation and I am being followed at MD Anderson.

I had a mild MI in 1981 and had bypass surgeries in 1991 and 1996 (to redo two failed grafts).  Currently my hematologist/oncologist wants to wait and watch and then suggested that when the time arrived she would start me on procrit and then perhaps other medications to keep my need for transfusions.  No estimate as to the speed at which I could expect progression of the disease and perhaps changes of the subgroup into which I may be classified.  

I am meeting with a medical school transplant guru tomorrow for another view/second opinion.  I am having a difficult time understanding what I can expect as I progress through the process.  I am concerned that with my cardiac history, I could have an adverse reaction with the procrit (MI or stroke) and though it is not actually contraindicated physicians are "cautioned" when using procrit with my history (not very comforting).  

Early questions are how can I expect to feel while taking procrit (assuming no adverse events), how have you felt when your condition requires transfusions, when you become transfusion dependent are you regularly receiving them (more than one a week?  weekly?  less frequently?) and how do you feel between transfusions, e.g. drastically fatigued when you are unable to be active?  How long does it take from transfusion to energy recovery (at least in part)?  

My fear is that I am going to go through the entire oncology process and then be too old to consider stem cell transplant or that some of the side effects of the treatments will cause enough physical deterioration or injuries (MI or stroke) to be less than a decent candidate for transplantation.  I would appreciate any observations (other than my limited knowledge is making me nuts) or shared experiences as you have gone through part of the journey I am facing.  I have so much to learn and try to understand and I will appreciate the sharing of experiences.

Thanks, divider
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