Iron Overload

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chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Iron Overload

Post by chris » 02 Mar 2012 11:10

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
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.
Karen

Re: Iron Overload

Post by Karen » 02 Mar 2012 14:24

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
chris
Posts: 755
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Iron Overload

Post by chris » 05 Mar 2012 10:52

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
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.
janetstanford
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Joined: 01 Nov 2010 17:54
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Re: Iron Overload

Post by janetstanford » 05 Mar 2012 17:41

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
chris
Posts: 755
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Iron Overload

Post by chris » 06 Mar 2012 11:06

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
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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