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 for being a bit of a lurker the last couple of weeks.
As you know mum had her BMT in March, she is now past her 100 days and as far as the "transplant" has gone she is great :)
She is still in hospital, and as we like to joke she is doing quality assessment on every hospital in the state as she is now in her 4th and hopefully final hospital before she heads home.
So the final diagnoses was "Flurobine Toxicity" , which as most of you would know is a Chemo drug.
We think the first indication that she was effected was her vision, this was like being outside in the sunshine and then walking into a house and your eyes take awhile to adjust, but hers were not adjusting. The rest was like a numbness from her feet which ended up just under her chest. This made her unable to work out where her feet were therefore was falling and then unable to walk.
This took about 2-3 weeks to work out, and then a week of in house fighting between the BMT hospital and the Rehab hospital (the rehab hospital didn't want to take mum due to the BMT as they had no idea re it)
So I guess the update is, mum has been in rehab for about 4 weeks now, and basically learning to walk again, the doctors say she may not walk again, but we never listen to doctors, and whilst she may not be walking by the time she gets home, she will walk again eventually.
She is making great progress, she has learnt how to get from chair to bed, and also has been standing and doing what I call the shuffle.
She is working very hard ( as she has done all the way through the last 12 months ) and desperately wants to get home, but knows that she has to be safe.
As you know mum had her BMT in March, she is now past her 100 days and as far as the "transplant" has gone she is great :)
She is still in hospital, and as we like to joke she is doing quality assessment on every hospital in the state as she is now in her 4th and hopefully final hospital before she heads home.
So the final diagnoses was "Flurobine Toxicity" , which as most of you would know is a Chemo drug.
We think the first indication that she was effected was her vision, this was like being outside in the sunshine and then walking into a house and your eyes take awhile to adjust, but hers were not adjusting. The rest was like a numbness from her feet which ended up just under her chest. This made her unable to work out where her feet were therefore was falling and then unable to walk.
This took about 2-3 weeks to work out, and then a week of in house fighting between the BMT hospital and the Rehab hospital (the rehab hospital didn't want to take mum due to the BMT as they had no idea re it)
So I guess the update is, mum has been in rehab for about 4 weeks now, and basically learning to walk again, the doctors say she may not walk again, but we never listen to doctors, and whilst she may not be walking by the time she gets home, she will walk again eventually.
She is making great progress, she has learnt how to get from chair to bed, and also has been standing and doing what I call the shuffle.
She is working very hard ( as she has done all the way through the last 12 months ) and desperately wants to get home, but knows that she has to be safe.
Please don't anyone stress if they are thinking of the BMT, I believe that this Toxicity we have been told is sooooooo rare like something like 0.02% get it. They don't have many papers on it, as people who have got it also have other major complications therefore they never get to treat this.
xxx
Dave J
Had the word last night that mum has been told 2 weeks and she can go home
xoxo
xx
It will be a little challenge to readjust to home life and the new challengers but mum is soooooo over hospitals :)
xoxo
Karen