New Member
Hello,
This is my first posting. I have high serum ferritin due to almost three years of transfusions every 2 or 3 weeks. Levels fluctuate around 5000 to 6000 lately. My underlying problem is anemia linked with a slow growing lymphoma. Chemo and drugs are keeping the lymphoma relatively under control but the docs can't figure out why I produce almost no red cells. But I digress. ... I am wondering how "bad" this level of ferritin is? I've developed severe erectile dysfunction and attribute it to iron buildup. The ED doesn't respond to the standard ED drugs. I've not had any imaging to look at the liver or heart for iron buildup and am wondering if I should. My oncologist seems to be more concerned about figuring out why I'm still needing transfusions than he is dealing with the iron overload. So I'm wondering if it's just that my iron overload is not really all that bad (yet?). I'm wondering if I should be getting chelation. At the time it might conflict with my ongoing cancer treatment (a brand new oral drug called Imbruvica). Just don't have the answers. ... I'd like to hear from others in similar circumstances. Bone marrow biopsies I've had say there is no evidence of MDS, but they don't rule it out 100%. They say I have "erythroid hypoplasia" which seems to me to be a fancy way of saying no red cell production.
Paul, age 52, in Washington State
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