Birgitta Alexius' Personal Profile
Positive response to Thalidomide or Revlimid due to Cereblon
Research. Since 2012 several studies have shown that the protein cereblon is a direct target of Thalidomde and Revlimid (as well as Pomalyst/pomalidomide) in patients with Myeloma or MDS. Median cereblon levels, isolated from peripheral blood mononuclear cells, are highest in lower-risk MDS with 5q deletion, lower in non-5q- MDS, and lowest in healthy controls. Similar results have been obtained in mononuclear bone marrow cells.
Studies have also found that patients with very low cereblon expression don't respond to Revlimid, and that patients who stop responding to Revlimid experience a decrease of cereblon in mononuclear bone marrow cells. I'm lucky because my cells probably express cereblon, but sooner or later I will stop responding.
Pomalyst. Pomalyst (the trade name for pomalidomide) is ten times stronger than Revlimid. The drug is approved in Europe for myeloma patients who have already tried two other drugs, but not approved in the United States. It is very expensive and I don't believe that I will be able to try it after Revlimid.
Looking Back. I am grateful for the very effective treatment I have received since my diagnosis in 2006. I feel OK except that I have neuropathy in my feet due to the disease and to Desferal and Thalidomide. I will continue to follow Marrowforums and to read as much as possible in the literature about MDS, because I believe that I manage my MDS better by knowing a lot about my disease.
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