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#1
Fri Aug 8, 2014, 05:56 AM
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Info about iron overload
Hi All,
Here is an article about iron overload. http://www.bloodjournal.org/content/124/6/873 Kind regards Birgitta-A 
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#2
Wed Aug 13, 2014, 06:47 PM
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Thank you Birgitta. Seems huband's doctor feels like he is old and expendable. We both have sensed that when we are at the office. But husband continues to be active and is making plans for next year's garden already. I may request another trip to Seattle to be seen again and find out if there are other options we haven't looked at yet. He gets 2 units of red cells about every three weeks and has been taken off Exjade due to other blood test results. He tolerated the Exjade as far as we know, not knowing what it was doing to his insides. No perfect solution but I read here for more ideas. Not eating iron-rich foods has to occur but that doesn't do much I don't think in the long run.
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Caregiver for husband
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#3
Thu Aug 14, 2014, 05:11 AM
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Iron overload
Hi caregiver,
As far as I remember your husband has low risk MDS - then he should get some kind of chelation when he is receiving txs. What is his ferritin level? As you know many treatment centers start chelation at 1000. I understand that your husband has a port-a-cath. Then he could get Desferal iv during 4 days from a "home pump" in connection with txs. Desferal has been used almost 50 years as a chelation drug. It is not as toxic as Exjade or the other oral chelating drugs. I have got more that 70 Desferal infusions since 2006 without adverse effects. Kind regards Birgitta-A
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#4
Thu Aug 14, 2014, 03:08 PM
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Birgitta, that's good info. Due to other blood readings unrelated to MDS he is to not have chelation. It's dangerous. Yes, his MDS is low risk but he has so many other ailments. But I think it's time for us to ask to be refered to Seattle again for another look at the situation. He didn't have a problem taking Exjade but the oncologist took him off it. We're waiting for another appt. And the latest ferritin test I saw was 2600, not 3600 which I may have written somewhere on this site. Still too high. A worry for sure.
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Caregiver for husband
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#5
Fri Aug 15, 2014, 07:22 AM
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iron overload
Hi caregiver,
As you perhaps have understood myany MDS doctors really don't believe that chelation is so important for MDS patients. It is different with patients who start txs when they are children. Then iron is toxic for example for the heart. We who start txs late in life manage iron overload much better. Kind regards Birgitta-A
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