Brain Tumour Survivor

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 Post subject: Chemo and edema
PostPosted: Sat Jun 30, 2012 10:44 am 
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Joined: Wed May 16, 2012 9:20 am
Posts: 3
Hi guys
Diagnosed with a GBM 4 in Jan, 2012, had surgery, removed a 3,5 x 3,5 x 3,5 tumor pressing on the brainstem. Sucessful surgery but suffered a stroke into the op area. Left me paralysed but did rehab pretty good. Treatment with temodal 42 days and radiation 30 treatments. Handled all that well, no really bad side effects except for fatique. Then the small res period an up the strenght of Temodal to 300, 5 days with nausea and vomitting... Didnt recover as good as I wanted...did the next round, 400 mg per day...nausea tablets worked well (didnt have them thefirst toldme i didnt need them because ppl didnt get sick...guess she was wrong eh?
Anyways.....a week later and I am still weak, but my left side is full of edema....neuropathic this usual? Anyone else experienced this? I feel that for every chemo round it is sapping my strenght. Any input would be appriciated.
Well enough ranting, have a good weekend!

 Post subject:
PostPosted: Sat Jun 30, 2012 4:25 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Welcome to the site!

If there are two enemies of a brain cancer patient, then I believe they are edema/inflammation and fatigue.

My oncologist said in my case once I was vomitting all the time it was time to come off the chemo. My opinion is unless you are seeing any benefit... Successful surgery means they removed all visible cells?

You are your own health advocate and need input into the decisions. My wife and I went back to see the specialists or asked for second opinions if that is what we wanted.

I still have weakness on my right side five years later. I believe in strength training - low number of reps 2-3. This is not what the physios got me to do. Training this way minimises fatigue.

I made lifestyles too. Diet is important for fatigue. I began experimenting with a vegetarian diet. That left me fatigued after two months so I added fish after that. I still have more vege days than fish.

There are protein tests on your tumour that they may have done. One is called a CNP subtype that is particularly relevant to GBMs.

Keep in touch and let us know how you get on.

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