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Old Sun Jan 5, 2014, 04:35 PM
jayc jayc is offline
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Join Date: Mar 2013
Location: nc
Posts: 20
Question Iron overload without treatment???

Hi everyone, I need your input and experience . I was told last week that I now have iron overload and my doctor(mds doctor of excellence), agrees with me about no treatment with chelating meds. I was dx with mds, -5q almost 3 yrs ago. I was treated with revlimid every day for 18 months but then it stopped working and my anc went down to .5 since then I receive 2 units of packed rbc every 3 weeks . my counts are: wbc 2.0, rbc 2.8,hgb 7.9-9.2 (mostly in the low 8s),anc now at 1.1,ast 38, alt 65 total protein 5.8 and ferritin 1582. So far I have had 28 tx.
He stated that the iron was in my liver and that I continue to stay on tx until I tell him to stop. He said not to worry because I could still live a long life. Chelation wouldn't be a positive exp for me because of the many side effects and some fatal. My symptoms of mds are like everyone else, fatigue, weakness,dizziness etc . I have adjusted to living with many limitations and this disease has not affected my spirit or me, only my body. therefore I do not want to disrupt my present status quo by adding something to my body that will have me feeling sicker than I am now. I prefer to live out the remaining days of my life in peace, joy , thanksgiving and helping others where and when I can. Is there anyone in this forum who is in the same position as I am ?
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jayc,72- dx mds-5q 4/2011, treated with revlimid 18months ineffective - PRBC transf. every 3wks since 3/2013,wbc2.2,rbc2.4,hgb8,anc1.
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