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.
Sorry it has been so very long! Life has been busy in a good way. Julian was 1 year post BMT in October--can you believe it!? No signs of AML and 100% donor. I do have a question for the post BMT folks though. Julian began having some foot pain (bottoms of feet usually--both feet, but not usually at the same time) and pain in the backs of his knees. He also had some elbow pain, but he has not mentioned this in quite some time. The foot and knee pain is pretty random. It can be in the evening, but often, it is first thing in the morning or after a nap. One day a few weeks ago, he literally limped on his right knee all day. The next day, it was fine. We have made a couple of Urgent Care visits over all of this, but blood work has always been fine. Other than some frequent child illnesses (nothing serious), he has been very well. He started 4K in October--likely the reason for the illnesses. He was tested for Lyme (very common in Northern Wisconsin), but he tested positive for only 4 of 10 antibodies. You need 5 to be positive. He had an inflammation test, but that was normal. He saw a podiatrist just last week, but his growth is normal. Any ideas? The only other thing that I have noticed is that at times, he walks kind of stiff in the morning. Some days that is worse than others, and that is whether he complains of pain or not. Thank you all for your thoughts. Otherwise, all is well. We are expecting baby number 4 in July. Julian is an excited big brother. Thinking of you all and still praying for you!
Jacki
Jacki
I am so happy to read that over all Julian is doing good. Hopefully someone can offer advice on his leg and foot pain.
Congrats on the new baby!!
Hugs and prayers
Karen
Davej
Great news on Julian. With regard to the pains -- I am over five years out and still have something hit me now and then usually for a short time. I think this is residual from the chemo -- its the body yelling for attention in a particular place (for me usually somewhere in the foot), and for some reason the body responds to it subconsciously and attends to the need so that pain is very short-lived, for me sometimes only a matter of minutes. As long as the blood tests are ok, I would not worry about these things as long as they stay temporary. They could go on for quite a while. Just a reminder that chemo is poison, and it can have some lasting effects -- not that it is still there, but the damage it did is. Take care -- daveB
I was so happy to see Julian is doing well. I have thought of him often. Congratulations on your pregnancy, What another blessing for your family. As far as Julians pains, Jimmy doesn't have any particular pain but aches and stiffness when he first gets up. We mainly contribute it to getting old:) my youngest daughter however was always very thin ( I'm sure Julian is as well ) and the same as Dave's son had a lot of growing pains.
Margaret
I have been racking my brain to come up with an explanation for Julians foot and leg pains. Are they cramps? Can he describe them at all? I have numbness in the balls of my feet since the treatment, but that does not sound like what Julian is complaining of. I will continue to think about it and hope that the pains are not frequent.
Cliff
Jacki
Just wanted to write a quick response, perhaps it will help in some way and maybe give you some peace of mind. I've never had AML (I was my dad's caretaker) but I have the same pains in my feet and knee that you are describing in Julian. Mine started at about the same time - the end of the summer. The pains are random - one day it will be my right foot then I might not feel anything for a few days then the pain will appear in my left foot. The knee pain comes and goes, too. I went to a specialist who is convinced I have Lyme. They said it is very hard to test CDC positive for Lyme so I was tested through another lab that is supposedly very specific in their Lyme testing and most lyme-literate doctors use them. There is a lot of controversy with Lyme testing - apparently it is not very accurate and many people who have it still test negative. Anyway, sorry for the long post. Just wanted to let you know that I have the same symptoms you are describing and I've never had AML. Hope that helps. xo
That is helpful and clears up some differences in responses between clinics. When Julian limped all day, his PCP instructed me to take him to urgent care. It was there that they tested for Lyme. The initial test was inconclusive. They sent it off for the other test, and a week later, a NP from urgent care called to tell me the results. Even though 4 of 10 antibodies is negative, she described it as though it was still inconclusive and suggested that his primary may want to test for it again. She called me the next day though, and she simply said that it was negative, indicating no need for further testing. We will see her next week, so I can talk with her more then. Interesting that you have had the same symptoms. thank you for sharing!