[Francine S]

Hi Everyone,
Just a follow-up since I attended my mom's Hematologist/Oncologist appt on 26 May. He feels that the edema in her legs is not due to iron overload hurting her heart but rather a cardiac problem not related to her MDS. I asked if my mom's blood volume was low: he said "no". I recall that her General Practioner ( I think an Internal Medicine specialist) said that she's got a leaky heart valve. Maybe the leakiness is getting worse in combination with her not being compliant with the diuretic. Her GP told her she must never miss taking the diuretic so she is being compliant now. He said the leg swelling should be reduced in 10 days. If it's not, I will see that she returns to the GP or perhaps sees a cardiologist.
Re. her liver function, she will get blood tests next week. Her Hematologist said that as long as the liver enzyme levels have decreased, even if they're not back to normal, he would start her back on Exjade. Her liver function tests were always normal before taking Exjade. He started her on the 20 mg/kg dose and said if she tolerates that, it would be increased to the max, 30 mg/kg. My read of the Exjade prescribing info is that a 20 mg/kg dose only results in a "steady state" of no change in ferritin levels for routine transfusion patients. But a 30 mg/kg dose results in a decrease in ferritin levels. Your comments about the effects of iron overload upon the organs take years to develop have made me less worried now. After reading that Desferal requires daily infusions, I think that would be very hard for my mom, at her age. Thank you all again for your comments and insight.