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 about the delay, still trying to really see what we can be doing.... Doctors don't seem to think they can do anything but "wait it out"... Mum is obviously concerned and worried. Eye sight appears to be getting worse, leg numbness appears to be stable.
At the moment they are keeping her in the hospital for say another week to see if it gets worse, then will put her in a rehabilitation centre.
I am looking at what things I can do more to simulate the nerve ending and maybe flush out this drug before too much more damage is done. This is what I have if anyone has any ideas
Doctors have completed tests and advised the following
Diagnosis - Fludarabine Toxicity
Symptoms
* Started approx. 30 days after Bone Marrow Transplant
* Shadow vision, darkness, slight blurred vision - no cataracts detected
* Suffering numbness from feet to approx. waist. Started in Feet. - Can move legs in bed, however as they are numb unable to walk or support herself. Currently bedridden. Suspect slight nerve damage.
Current Health
* Diagnosed 2013 April with AML - Acute Myeloid Leukaemia - Received 3 rounds of Chemotherapy, which included Fludarabine, no effects where noticed last year
* Complete Bone Marrow Transplant 20th March 2014.
At the moment they are keeping her in the hospital for say another week to see if it gets worse, then will put her in a rehabilitation centre.
I am looking at what things I can do more to simulate the nerve ending and maybe flush out this drug before too much more damage is done. This is what I have if anyone has any ideas
Doctors have completed tests and advised the following
Diagnosis - Fludarabine Toxicity
Symptoms
* Started approx. 30 days after Bone Marrow Transplant
* Shadow vision, darkness, slight blurred vision - no cataracts detected
* Suffering numbness from feet to approx. waist. Started in Feet. - Can move legs in bed, however as they are numb unable to walk or support herself. Currently bedridden. Suspect slight nerve damage.
Current Health
* Diagnosed 2013 April with AML - Acute Myeloid Leukaemia - Received 3 rounds of Chemotherapy, which included Fludarabine, no effects where noticed last year
* Complete Bone Marrow Transplant 20th March 2014.
Dave J
The problem at the moment, it one effect is also like everything from her hips / legs down are like jelly. For example the last time the nurse did try and get her up (which was a week ago and she was still ok to walk) the nurse got her to sit on the side of the bed... this was with not just bottom on the end, this was sitting all the way back on the bed with the back of the knees against the side of the bed (hope that gave a vision idea).
When the nurse just moved away for a second (still in the room) its like mum just slid of the bed, like she had no control of her hips / legs ... hope that makes some idea.
When she heads to the rehab centre, they will be more set up to be able to "strap" her into a bike or some sort of rehab machine. The normal BMT hospital apart from the normal physio, doesn't really have the facitilities / people for proper rehab.
She does everything the doctors / I throw at her, so hopefully this will not get any worse and its like the bloods you have to go through the worse before the good comes back :)
We are taking the positive approach, mum does not really want to be sitting around I can tell you :)
Its just a very hard diagnosis as it appears their are not too many cases of this toxicity and those cases that they do have the patients had other BIG complications around the BMT which meant that the doctors were unable to complete the treatment of the toxicity as they had to deal with the other issues and this was not successful
thanks again all, we are just being positive at the moment, trying to look for some alternatives
Last Friday we had a little bit of a showdown, mum was very upset as it appears the Rehab people didn't want to take her, and the hospital for the BMT she is at don't have the rehab facilities for her.
After basically breaking down, the BMT doctor called the rehab centre and reassured them that HE will still be responsible for the BMT and if she has any problems with that (which basically appears to be none) that he will taker her back to his hospital. He will go there for weekly appointments.
They are having another meeting today..... we just want this show on the road, hopefully we can do that sooner than later as mum just wants to get back on her feet :)
xx