Hi All
I just got a Google Alert for this discussion on iron chelation therapy for MDS:
http://www.onclive.com/conference-cover ... py-for-MDS
It might help with any decision-making for those who are considering it.
Best wishes
Chris
Iron Overload
Moderator: Steering Committee
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Re: Iron Overload
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
Re: Iron Overload
Hello Chris
Hope that you are well!
Thanks for the link - I've read the synopsis, and will check out the rest when I am at home.
It does make me wonder though, what the alternatives are for MDS patients suffering from iron overload.
Karen x
Hope that you are well!
Thanks for the link - I've read the synopsis, and will check out the rest when I am at home.
It does make me wonder though, what the alternatives are for MDS patients suffering from iron overload.
Karen x
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Re: Iron Overload
Hi All
I agree, Karen. It can be so difficult for patients and doctors to make decisions about different treatments on offer when there is a lack of sound evidence about their safety and benefits. In the States, they are having difficulties recruiting sufficient numbers of patients to a trial regarding iron chelation or not because their doctors are so convinced that it is necessary. It puts us between a rock and a hard place sometimes!
Good luck Delwyn. Hope you can get some support on this.
Chris
I agree, Karen. It can be so difficult for patients and doctors to make decisions about different treatments on offer when there is a lack of sound evidence about their safety and benefits. In the States, they are having difficulties recruiting sufficient numbers of patients to a trial regarding iron chelation or not because their doctors are so convinced that it is necessary. It puts us between a rock and a hard place sometimes!
Good luck Delwyn. Hope you can get some support on this.
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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Re: Iron Overload
Hi all
Just had results of scan heart iron overload has reduced by half not that i was at dangerous levels in the first place this shows the exjade is working and reducing what was there and clearing out what i have had since(2 yrs worth of transfusion) ...so this means damage(if any ) should not happen:)
Chris what drug/trial in the states is having issues finding people to join
Take care Janet
Just had results of scan heart iron overload has reduced by half not that i was at dangerous levels in the first place this shows the exjade is working and reducing what was there and clearing out what i have had since(2 yrs worth of transfusion) ...so this means damage(if any ) should not happen:)
Chris what drug/trial in the states is having issues finding people to join
Take care Janet
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Re: Iron Overload
Hi Janet
Good news about your iron overload results.
It's all on the link I posted previously. There is a written summary and also a recorded presentation about iron chelation therapy.
Best wishes
Chris
Good news about your iron overload results.
It's all on the link I posted previously. There is a written summary and also a recorded presentation about iron chelation therapy.
Best wishes
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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