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When to begin treatment really is the million dollar question, and comes down to some combination of what your doctors think and what you think as a patient. My current hematologist has basically said that we can start treatment at any time, but you will know when it makes sense. 1 transfusion every few months seems to be pretty good. My doctor seems to think that if you are generally feeling well and the disease does not seem to be progressing, that it is better to hold off on treatment due to the side effects. When you have signs or symptoms of a more aggressive disease, treatment makes more sense.
The high ferritin can be caused by transfusional iron overload, but may also be caused by hemolytic anemia or high iron consumption.
From the studies I have seen, revlimid is really good when an MDS patient has the del 5q change in their chromosomes, and works in about 25% - 30% of patients without this change.
Not sure if this helps.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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