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.
Hi All just thought I would put a little update out there :)
Mum is now day +46 things are going pretty well, nothing too painful or "illness wise"
Her numbers are HB 111 WBC 5.27 Platelets 138 Neutrophils 3.3 so everything has jumped back quite well.
She is having problems with balance, now she mentions its like her feet are a little tingly.... she said its hard to explain but its like her feet are there she can feel them telling her she has feet.
Second is the vision, she says it doesn't hurt or itch or any problem but its like she has a "film" over the top, like she is wearing darksunglasses inside.,... its not blurry or watery.
Doctors did reduce her main GVHD med, but are not 100% sure what it all is at the moment,.
Anyway, if anyone has ideas ?
So far all good our side of the world :)
xxx
Mum is now day +46 things are going pretty well, nothing too painful or "illness wise"
Her numbers are HB 111 WBC 5.27 Platelets 138 Neutrophils 3.3 so everything has jumped back quite well.
She is having problems with balance, now she mentions its like her feet are a little tingly.... she said its hard to explain but its like her feet are there she can feel them telling her she has feet.
Second is the vision, she says it doesn't hurt or itch or any problem but its like she has a "film" over the top, like she is wearing darksunglasses inside.,... its not blurry or watery.
Doctors did reduce her main GVHD med, but are not 100% sure what it all is at the moment,.
Anyway, if anyone has ideas ?
So far all good our side of the world :)
xxx
GOD bless
Julie
My doctors started me out on 175 mg a day of cyclosporine. It caused a lot of uncontrollable shaking and I noticed that every time I took it, about it an hour afterwards my vision would become very blurry and sensitive to light. I'd have to put sunglasses on (even inside) for about 30-45 minutes until the symptoms subsided. My doctors have gradually lowered my medication, and I am now on 75 mg a day. I still have a very small amount of shaking (still enough that other people notice and question it), but the vision problems are gone!
There seems to be a delicate balance with the gvhd medication. Of course it needs to work to fight against gvhd, but you also don't want the levels in your system to be too high. There could be another reason for your mum's vision problems, but I'm very confident that the cyclosporine caused mine. I'm sure your doctors will work on lowering the medication more, if need be.
Wishing you all the best!
Sending happy thoughts!
Colleen
Warrioremm, we seem to be on the same date track glad to hear you are doing well.
Thanks also for the name it was the cyclosporine, she started on 150 and now down to 100 or 75 I think at the last appointment ( I was only there for the first out of hospital as I live on the other side of Australia)
Hopefully they will be able to work out the right balance as it is a little frustrating at you would know.
Will let you know when she has her appointment this week :)
xxx