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.
So spoke with Mum last night and she advised that the feeling she is having in her legs / feet is progressively getting worse, to the point where she said she may have to get a wheelchair.
I told her immediately to call her BMT Dr and tell him, she said they have been made aware of it in their weekly meetings, but I said tough call (as he is very good at calling back)
Anyway he was concerned obviously and she has an appointment this morning.
Just seeing if anyone has any suggestions as what it could be, it has been progressively getting worse .... she feels fine and her numbers are pretty much back to perfect. Her feet / legs don't hurt but she said it just feels like they are "there" but not coordinating with her brain. She said they are not numb but its that numb feeling like they are dead weight ?
anyone with similar systems or idea ?
We think it may be one of the drugs ?
xx
I told her immediately to call her BMT Dr and tell him, she said they have been made aware of it in their weekly meetings, but I said tough call (as he is very good at calling back)
Anyway he was concerned obviously and she has an appointment this morning.
Just seeing if anyone has any suggestions as what it could be, it has been progressively getting worse .... she feels fine and her numbers are pretty much back to perfect. Her feet / legs don't hurt but she said it just feels like they are "there" but not coordinating with her brain. She said they are not numb but its that numb feeling like they are dead weight ?
anyone with similar systems or idea ?
We think it may be one of the drugs ?
xx
I guess there is the balance of having the drugs to stop rejection and having this problem !
xxx
Being admitted at the moment :)
I had some episodes post transplant (under the 100 days out dealing with the gvh flare). I had transient areas that felt like they were asleep. The week that it was my hip was strange. Ended up being my tacrolimus trough level was on the higher side, I'd stopped it at day 60 for the clinical trial. Had gone back on it due to gvh back on get the.levels up loading dose. They went away when the foes was lowered.
However her blood counts have gone down the platelets and Red's by about 10 points.
They were pretty much back to normal which they thought was exceptional ?
Is it a concern they have dropped ?
ick trying to be positive!
The MRI was all clear. Yesturdays doctor told mum basically it was all up to her to get her strength back and work it out (a little like you are making it up)
Todays doctor this morning confirmed the MRI was clear, and that they are a little baffled.
She has her doctor this afternoon coming around, so waiting on some sort of "what next" .....
Mum said her legs were not any worse this morning, but her vision is slowly getting worse.
xxx
Get her walking and extend her distance slowly so she can regain her strength. I know it is hard for her but the payoff is huge.
Prayers for your family and mom.
Dave J.
My treatment left me with a neuropathy involving the front of both feet. It has not improved that much, but I am used to it and accept it.
Cliff
If your mum is not active that could be contributing to it, and perhaps getting up and getting at it could be effective. Perhaps they could even refer her with a prescription to some rehab. The doctor should not dismiss it -- for sure it is real. Even if it is "only imagined" it is STILL real, and it needs to be addressed, not trivialized. But perhaps he was not communicating that -- perhaps just trying to get her up and around. I know my father in law just about killed himself not walking. He got to limping around so slowly and finally had a stroke. It is very important to keep moving -- I know it is painful -- I know that every time I get up. 70 ain't exactly young. But it is essential that we just ignore the pain and keep going. Hope this helps -- dave
We also as soon as she left the hospital about 4 weeks ago have always started on the walking strength routine. I went for a week when she first left hostpital and by the time i came home she was walking at least 1km each day (with a break inbetween). As the weeks went on she did try and do the walking but the feet got worse and worse to the point she fell twice, the physio gave her crutches and on Monday she thought she may need a wheelchair.
had a couple of tests yesturday, waiting for a lumber test to be done monday
i think they are saying neuropathy, hopefully it goes down cliff and its just a little in her feet so she can keep on walking :)
xxxx