Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Tuesday I went for my usual checkup. Counts were pretty good, mostly slightly below or on the low end of the normal range, pretty much where I've been running. BMB results from about a month ago were good. Doctor told me I didn't have FLT3 any more, I guess because my donor's cells have taken over. They say I have a little GVH but it's so subtle I don't even notice it. It will be exactly 6 months post transplant on Friday.
They have been considering "maintenance" I guess because the FLT3 increases the likelihood of relapse. The doctor also mentioned that a stem cell transplant works about 50-60% of the time so this is meant to increase that percentage. There has been talk of several medications and the flavor of the day seems to be Vidaza.
I've seen this drug discussed here before but not in this context. Has anyone ever heard of this? Is this necessary? I thought the stem cell transplant was supposed to be the end unless, of course you relapse. I was reading about the side effects and it's pretty likely that your blood counts will drop and I'm sure fatigue will ensue as usual. I feel fine and I'm going back to work July 1 and it appears that this will mess up those plans.
I always accept my doctor's recommendations and never refuse treatment or second guess her judgement but I'm considering telling her I don't want to go this route and let's just see if the stem cell transplant works without bolstering it with additional chemo. I'm just tired, as we all are, of being poked and probed, of taking massive amounts of medicine, of wearing gloves and masks, of being sick. I just want my old life back. I feel I was getting there and now we're taking a step backwards.
Anyway, whatever anyone can tell me about this drug or this proposed treatment plan would be helpful. Thanks.
They have been considering "maintenance" I guess because the FLT3 increases the likelihood of relapse. The doctor also mentioned that a stem cell transplant works about 50-60% of the time so this is meant to increase that percentage. There has been talk of several medications and the flavor of the day seems to be Vidaza.
I've seen this drug discussed here before but not in this context. Has anyone ever heard of this? Is this necessary? I thought the stem cell transplant was supposed to be the end unless, of course you relapse. I was reading about the side effects and it's pretty likely that your blood counts will drop and I'm sure fatigue will ensue as usual. I feel fine and I'm going back to work July 1 and it appears that this will mess up those plans.
I always accept my doctor's recommendations and never refuse treatment or second guess her judgement but I'm considering telling her I don't want to go this route and let's just see if the stem cell transplant works without bolstering it with additional chemo. I'm just tired, as we all are, of being poked and probed, of taking massive amounts of medicine, of wearing gloves and masks, of being sick. I just want my old life back. I feel I was getting there and now we're taking a step backwards.
Anyway, whatever anyone can tell me about this drug or this proposed treatment plan would be helpful. Thanks.
Lou -- my take on your situation was that there was really no big advantage seen with the vidaza -- it was like a 50-50 chance it would do anything, and with those odds you might just as well take a pass on it and not have the side effects. I was chemo only and that was the same deal for a transplant for me -- it was a break even, and I am glad it was now almost 6 years later, and I expect you will survive it out the same way.
I wish you both the best and I will be praying for you -- daveB