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Old Sun Oct 8, 2006, 06:58 PM
Marlene Marlene is offline
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,360
Hi Maggie,

A Serum FE reading that high may be a bit misleading. John's had well over 200 units of red cells and never got that high. Rember that FE is very unreliable especially once it's elevated. Just about anything can elevate it....inflammation, infections, the way they handle the speciman in the lab as well as how long they keep the arm band on when drawing the blood. So don't be too alarmed. I assume you had an FE reading when you were first diagnosed.

When you start the Exjade, don't let them put you on a full dose at first. John started with 500 mg for the first three months. We just upped it by 250mg.

Recovery from Hy Cy is long and John took longer than the average to get transfusion free. He really was hit hard by the treatment. He went 84 days without a white count. It took him 20 months to be transfuion free of platelet and 22 months for red cells. He's in a partial stable remmission right now. Meaning he's transfusion free but counts are still low. But they are slowing rising. We just had a major bump in the road though. John fell and ruptured his quad tendon and just had surgery. So it will be a while before we know where his normal counts land. Since he lost about two points on his HGB, they transfused him with two units. Oh well.

Anyway....five months, even though it seems like forever, is not that long when it comes to hi cy. I don't know the recent stats, but the average mean time to be transfuion free is around 11-13 months. That was back in 2002. Some are sooner, others later. That's the one thing they can't predict. So hang in there. John stopped getting platelet transfusion when he could hold 8k on his own.

So at what intervals are getting transfused now?

Hang in there, you will get there.

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