Iron Overload and When to Start Treatment

[Shirlee N.]

My husband has MDS that has converted to AML. he is treating with Vidaza. His ferritin level is 1349ng/mL. His Iron is 256ug/dL. His oncologist does not what to atart treatment because of the side effects. Any thoughts on when to begin treatment for iron overload?

[milliken2]

Shirlee;
Earl has had over 100 units of blood since the middle of August last year, and also many platelet transfusions. So far - Thank the Lord - his has not converted. He gets Desferal IV after every transfusion to limit the iron overload. To my knowledge - at least as far as he tells me - he has not had any side effects from the Desferal. There are many types of chelation therapy - it might be worthwhile to ask your oncologist what type he is referring to and ask about others. Good Luck to both of you.
Beth

[Chirley]

Hi,

I didn't start chelation until my ferritin was over 5000 although the doctor originally told me he would start treating at 2000.

I started Exjade but became very ill after a couple of weeks.

Since then I've become transfusion free and have had some venesections and together with a natural decrease, the level is just under 1000. Unfortunately my liver has been affected and the function isn't improving even with the lower ferritin.

Hope this helps.

Chirley

[Birgitta-A]

Hi Shirlee,
You know the doctors don't look only at the ferritin level but how severe the disease is and how the liver tests are when they decide about iron chelation. It takes years to develope liver and heart damage from high ferritin levels.

For your husband it is much more important to treat the AML and we hope that he will have a good response without adverse effects.
Kind regards
Birgitta-A
73 yo, dx 2006 MDS Interm-1, received 142 units of red blood cells 2006-2010, treated with Desferal, Ferriprox and Exjade for iron overload. July 2010 ferritin 5600 after txs every week. No txs since Sept 2010 after treatment with Thalidomide + Prednisone since June 2010. Latest ferritin value 978.

[Marlene]

I have to agree with Birgitta on this. Getting the disease under control is more important at this point. Why add another burden to treatment.

[Shirlee N.]

Thanks so much for your input. First things first is so helpful.