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.
I am a 70 year old male who to date have gone through induction and two rounds of chemo, all with little side effects and success as in remission. Now facing the choice between reduced stem cell transplant or going with one more round of chemo and see how I do. Am concerned about quality of life, and if GvHD, both chronic or acute, is worth the risk of going the BMT route. Know either one is the roll of the dice. Any thoughts would be appreciated as have talked to transplant patients who have had a lot of problems with GvHD. There is more involved in the decision, however this is a start. Any comments will be appreciated.
I have the same problem at 67. Pre-AML I could hole my own with a lot of guys in the 40s. But Post-AML ... as they say ... I ain't as good as I once was. But like you -- cannot tell if it is the chemo or age. I do not think it was the AML per se, although the symptoms of AML were much the same as some of the symptoms of chemo. But AML never caused the sores in the mouth and a dozen other things. So the lingering effects are from the chemo, not the AML. Of course, without the chemo I would be dead right now, so far be it from me to complain.
Things come back but slower than we would like and being old guys like we are, the body probably does not have the old healing power that it once have, and my low blood numbers, while not critical, sure do not help the situation any. For example, I understand that chemo essentially affects every organ in your body. Now it might not be the chemo directly, it might be what the chemo did to the blood (which was exactly what it was supposed to do). So the next to zero numbers mess up the organs, and it takes them longer to recover.
Perhaps our hearts are not quite as efficient as they used to be. That could be the reason for getting winded quicker than we used to. My problem was also compounded by the heat down here in the South. Today I stayed out for a couple hours and did some fairly active work -- sprigging grass -- not the easiest work. But it was much cooler today than it has been, so I figure that is the reason that I held up better.
The trick is to stay active, push the envelope, but not too far. I did hear of one AML survivor who thought he was superman and ended up dying of a heart attack. So, let's not over-do it.
Again, great to hear from you -- dave
It was also my 6 month birthday. I am officially 6 months out of transplant as of yesterday. I called my sister, the donor, to tell her. We are planning a birthday celebration for next March 30, when it will be our year birthday.
Still feeling pretty good today, a little tired, but I am blaming the very gloomy, rainy weather we are having. I wish we would get back to our nice New England fall weather, that would be nice.
So everyone stay positive and enjoy the day, even if you just do chores and errands.
That is so great to hear!! You were soooo active! Isn't it great to have one of those days where you can glimpse some of your old self?
I was thoroughly impressed with all the activity in one day. I couldn't do all that yet but just loved hearing about your day. I had a day last month when I felt good and was much more active than usual. Fabulous!
Happy 6 month birthday!
P.S. sounds as though you've got a budding olympic swimmer. All my grandchildren took lessons and I always rest better when we go to the lake (even though they have to wear life jackets until they are well into their teen years!)
Almost 11 months in remission. Thought this thread should be updated for future friends who are facing the choice of treatment.
Ollie
The decision was taken because I have normal chromosomes, FLT3 negative and NPM1 mutated. The other side of the equation is that I am relatively young (42) and in good health (other than the leukemia....). So I guess their thought is that if I do relapse, I am likely to be ok going through BMT then.
To me it looked like nobody really gets cured with only chemo, because the few people I do know who had AML had BMT. So I actually asked several doctors if they personally know people who were cured with only chemo. They all said Sure!
And here I saw a few more, which is very encouraging.
My thought is that if the experts recommend to do chemo only for now (also - I don't have a matching sibling, if I had one, some doctors said they might consider BMT), there are good aspects.
I may be cured without ever needing BMT (which I know is not an easy process). Statistically I have 20-40% chance (depending who you ask..). It's not much but it's not bad, and leukemia made me quite cynical about statistics (statistically, I should be a 65 year old male, since that's the average AML patient...).
And if I do relapse, there may be something new out there. So time is definitely an important asset.
Abby2
My oncologist and the transplant doctors at Univ. of Michigan told me that chemo only was the route to go with my AML (good prognosis type). I was told that chemo only can offer a definite cure and SCT's aren't always indicated as the appropriate choice, given the risks of SCT, etc. I happened to be a healthy 55 year old at the time.
Even though I ended up needing the SCT, the stats were originally in my favor for a cure with chemo only.
I know chemo only survivors beyond this group, too, so if you can trudge through the induction and consolidations, you may put all that leukemia behind you! Good riddance, AML!
Be well, friends -
Robin
I went for the SCT, had it 2.5 years ago.
Was a good choice for me. I have cGVHD that intensified at one year and has been with me ever since, although, it may be starting to wane. My GVHD is skin related and has caused hard skin around my shins and ankles, pigmentation issues and most concerning.....stiffening of joints....wrists and hands. This was a worry because if it didn't back down it could have caused disability. However, now ranges of motion improving.
Now that I am over two years in remission, traded gvhd for a lesser chance of losing remission, I would do it again.