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'm sorry it has taken so long for me to update on my husband Jimmy. Since it's been so long I will give a little background. In the 1980s Jimmy was diagnosed with Hodgkin's disease and received a BMT in 1988. 25 years later in July 2012 he was dx with MDS/AML and again went on to receive a MUD T cell depleted BMT in July 2013 at Sloan-Kettering. Jimmy had some bumps in the beginning mainly C-diff but then things went pretty smoothly in his recovery. Our biggest concern was that Jimmy had split chimerism, his neutrophils and B cells were 100% Donor but his T cells were only 2%. Despite that Jimmy felt really good back to work full-time and exercising like crazy, he was even able to start skiing again which is his passion. In January 2015 19 months post BMT at a regular check up we saw that Jimmy's count starting to drop they did a BMB and we found out he was relapsing. First thing Jimmy did was go skiing the next morning in Vermont. After a lot of back-and-forth between the doctors we have decided to do another round of induction chemo (flag) followed by a DLI. Our incredible Donor has come through again and again we are awed by the kindness of strangers. Jimmy checked back into the hospital last week and started the treatment. Just to give an idea of how good of shape he was in 14 laps around the floor is 1 mile jimmy's disappointed he didn't reach his goal the highest he's gotten so far is only 93 laps around. So far everything is going as expected and praying this will wipe out the leukemia once and for all.
Margaret
Margaret
I'm trying to figure out what is going and hoping someone can help.While Jimmy's counts are all within normal the last 2 weeks he seems to be getting weaker. We have been in to the Dr.'s but they can't find a reason. He has completely lost his appetite and has dropped another 5 pounds he now weights 118lbs. He is also very tired and hasn't been able to go for his walks not even on the treadmill at home. Unlike most on here Jimmy does not get many colds and all his test are coming back great. Any thoughts?
Margaret
I'm praying for renewed strength and appetite for Jimmy.
Blessings,
Julie
I sent you a private message a few days ago, not sure you've seen it yet. If so please reply when you can.
Fatigue is super common, tony battled it as well for the first year but not too terribly. Tony went from a lean muscular 190lbs to 160lbs at about 6 months mark. It finally started coming back at about 9 -12 months
It's nothing unusual, just a crummy side effect. Have they tested for gvh in the gut?
Lea, I'm sorry I didn't see your PM before. I did message you back.
They did a colonoscopy and an endoscopy which ruled out GVHD. Jimmy's tacrolimus (sp) level is vey high and they are trying get his dosing right. We don't know if that is causing these issues.
Margaret
I didn't know Jimmy was losing weight. Have there been significant changes in his medication regimen? Medicines often lead to anorexia that resolves when you stop them. He is not anemic, and all bloods are normal, so this has to be a side effect of something, unless he is suddenly depressed. Is there something bothering him emotionally?
XO,
Cliff
You've made me very unhappy, Margaret. We need to get Jimmy on track.
I know I have been absent for a while but just wanted to update that Jimmy is now 270 days post 2nd bmt and doing really well. All counts are at or close to normal range and his wieght is up about 5 pounds which still has him 20 pounds under from 2013 bmt and 10 under from the 2015 bmt but he is eating much better and overall getting stronger. Biggest problem now is boredom so he is starting back to work part time next week.
Jimmy was DX in August 2012 right when my son was starting college, well he is now graduating next month and I am feeling very blessed that we will all celebrate this milestone together.
Margaret
Congrats on your son graduating also.
Hugs
Karen
I am very happy about Jimmy, BUT EVEN HAPPIER THAT I WILL GET TO SEE BOTH OF YOU ON FRIDAY when Jimmy and I both have appointments at Sloan Kettering. YAY!!
Cliff
Blessings
Julie
Our last visit we were even able to meet up with Cliff and not that I have to tell any of you but he is just as incredible in person :)
Margaret
First of all, it is a mutual admiration society here. It was amazing seeing the two of you again, because the last time was in the context of our "brother" Eddie who we subsequently lost. Being with you was like being with old friends. True, there was a bit of AML talk mixed in, but mostly we talked about what NORMAL HEALTHY people talk about, and I appreciated that so much. I am thrilled that Jimmy's numbers were excellent and that he is gaining weight. I thought Jimmy looked just fine a few weeks ago and you two make the sweetest couple! There are good times ahead for you (finally) and now Jimmy has to just be there for those who are going through the worst of all of this, by setting an example of someone who has gone through the fire (and more than once) and has come out WHOLE. I couldn't be more happy. I love you both.
Cliff
Cliff
Blessings
Julie
Margaret