Al

I was diagnosed with MF 14 years ago at age 65 when my hgb dropped below the normal minimum of 14. No symptoms for several years as my hgb stayed above 10. Then I tried Hydrea, Procrit, Danozol/Prednizone. Nothing much helped. I began transfusions in 2007 when my hgb dropped below 8.

I then went into a 2-year trial of Celgene's Pomalidomide. That helped. I was transfusion-free for about five months in 2008. Celgene lists me as a "responder" in its marketing publicity. But then it seemed to stop working. The trial hematologist took me off the trial in late 2009.

My hematologist wanted me to get into an Incyte Trial, but I was ineligible due to platelets below 100. So I tried Revlimid, which has done wonders for many patients. But not me. After four months, we stopped Revlimid in June, 2010. Now I take nothing. I get transfusions every other week when my hgb drops below 8. And I take Exjade to try to keep my Ferritin level under control.

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