My husband had an MRI about a month ago. He was diagnosed in Dec 2012, he's done the radiation and temodal 140mg a day during the radiation period, and is now on the second round of 5/23 temodal, first was 340mg and he has just finished the second of 420mg. He is really tired, but hasn't been sick with it at all, even though he doesn't take all the anti-nausea meds because they constipate him. He is a lot worse than he was when he finished the radiation. His mobility is poor - left sided weakness, he can still walk but it tires him, but he can't do anything with his left arm. He sleeps a lot, often not getting out of bed till 1 or 2pm, although he is doing two days a week of physio and we have to be there at 10am on those days, which is a struggle. He has gone through phases of falling, but the main thing at the moment seems to be confusion. He will get up in the middle of dinner and say he is going to the toilet then I'll hear the shower on and go up to find him in the shower. He never turns lights or taps off (basin or shower, I often find him getting dry while the shower is spraying water all over the place). He doesn't know what day it is, and argues with us when we tell him, although he isn't aggressive about it. He has a serious case of 'neglect' (we went to the theatre and he came out of the toilets with him pants around his ankles and didn't seem to care).
He had an MRI about a month ago (even though the radiation oncologist didn't want us to have it till at least two months after radiation, our medical oncologist wanted a 'baseline'). At first they told me that the tumour had almost doubled in size, now they are saying it is pseudo progression, although they have admitted there is almost no way to tell the difference. He is booked in for another scan in two months time, at which time they should be able to read the scan and actually tell us something with some confidence. Given the increasing symptoms I'm not particularly hopeful.
I'd really like to know if others are experiencing similar symptoms and if anyone has any suggestions.
You should be able to have the physio come to you twice a week.
My brother was diagnosed Jan '13 GBM 4 He was operated on and they told us it was very successful.
My brother also has trouble with weakness in his left leg and left arm
He doesn't seem confused though just tired and his balance is not good. Today we went and got his second lot of Chemo tablets.
When he was diagnosed in Jan he was walking fine, now if I can grab a wheel chair for him I do. He can only walk a few steps before he gets too tired.
I'm sorry I really don't know the solution. I do understand there is a lot of trying to balance chemo tablets and dex. My brother is also on a diuretic to get rid of the fluid retention.Left leg and left arm very swollen
Take care hang in there
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