How many of you are transfusion dependent?

[Mary4Mike]

Laleigh,
I can relate to what you are hearing from your husband about being a burden. I am sure that many of the spouses, mates and caregivers are hearing much of the same thing. I am also amazed at what these patients go through to fight this disease. I am sure that I would never have survived everything my husband has been through and he doesn’t complain.

I am interested in the low dose Dacogen treatments your husband will be taking. What do you mean by “low” ? When will he begin and is it part of a study? Cleveland Clinic is doing studies on Dacogen dosing. My husband is currently receiving 30mg each day for five days and then is off for 5 weeks.

If you have any info on this, I am very interested.

Thank you,
Mary

[Carruth]

My mil is still getting red blood about every two to three weeks. A little over two weeks ago she got three units and then more today. She’s just about to have her sixth round of vidaza, and we had hoped by this time the transfusions would be unnecessary or at least farther apart. It hasn’t happened. Her white count hovers around .8, and the platelets go from 4 to 28, depending on the nadir and recovery. Has anyone had a good response after the sixth round? I know for most it’s after the fourth or fifth.

[jaxem]

carruth
while she’s on vidaza, don’t expect the counts to go up. usually after the 6th round, your doc will stop the vidaza and await the counts to return (about a month), then do a bmb to check the blasts level.

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