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Old Mon Jan 6, 2014, 05:25 AM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Chelation

Hi jayc,
You know most doctors start chelation in transfusion dependent low risk patients when the ferritin value is more than 1000.

It is true that your liver can handle iron overload a long time but you have to control the liver tests often.

Now it is almost 8 years since I got the dx MDS Interm-1. My bone marrow was very fibrotic and I was transfusion dependent at dx with a HGB of 7.0 so I had in fact been ill a long time before dx.

After 40 units of blood I started with chelation. The first drug was Desferal given in my port-a-cath during 4 days in connection with trandfusions. That drug is well knows since almost 40 years and I have not had any adverse effects. A port-a-cath is a small device inplanted in the chest with connection to a big vein.

I have now recieved 186 units of blood. i had good results with Thalidomide and was transfusion independent almost 2.5 years. Now I take Revlimid and don't need txs but we don't know how long time i will respond.
Kind regards
Birgitta-A
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