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nelsonel's Message Board Messages

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On Feb 08, 2019 9:13 PM Macpudd wrote:

Thanks Nelsonel, I got my mri results last week, tumour is growing again and is now biggre than it was before it was removex, most likely starting Lomustine chemo but there is an mdt metting on Monday to discuss outside possibility of another craneiotoym. I also had partial seizues last week so back on dex and keppra incrsed. Still able to walk a bit and appettite good but I think i'm coming to the end of the line in the not too distnat futher. Its for my wife and family that it bothers me at this stage. Hope things are good for yoou and your family 

I'm so sorry to hear that, Macpudd. I hope that the next course of treatment you choose extends the time your wife and family have with you. It's a good sign that you still have an appetite though. You are clearly a fighter. 

On Dec 29, 2018 12:04 PM Macpudd wrote:

Hi folks, had craniotomy last Jan followed by stupp protocol and finished temodar end of Oct. Am mentally and physically down at the minute. I cant seem to get by fatigue, deaf in left ear and periperhal vision in right eye bad. Devellped diabetes because of dexamethosone. I try to go walking most days and do 3k but afterwards have to sit and usully fall asleep for an hour or two. Same thing happens when I do some chores in the garden or house. Concentration is poor, reading is slow, its taken a while to types this. Have retired from work, I dix try to go back but my employer told me my perfeormance was poor but was good to me and gave me a decent retirement package. I had stage 3 colon cancer 4 years ago had surgery and folfox chemo and got back to running 40k a week and being active, thought I could do it again at least until the gbm came back but I am not making any progress. Does any one regain what they had.  Am gettinng to the point where i dont want to go on. Sorry for all this waffle and I know there aer people worse than me.

Hi there, 

My mom was diagnosed with a GBM in 2013 at age 68. She takes 20 mg of Adderall IR in the morning to help with her debilitating physical and mental fatigue. It's helped TREMENDOUSLY. The actual brand name or the generic made by the manufacturer Teva are the ones that work. (We found out that not all generic Adderalls are made equal.)  

I imagine you've seen the link below or read info similar to it, but it helped us understand the different reasons why brain tumors in particular and their treatments can cause extreme fatigue:

https://www.thebraintumourcharity.org/understanding-brain-tu

I'm amazed by all that you're doing in spite of that extreme fatigue and the other frustrating problems you mentioned.  I hope so much that you are doing well.  

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About nelsonel

Caregiver
Brain Cancer

Mom is 5 year GBM survivor (multifocal gliosarcoma subtype). Diagnosed in Oct. 2013 at 68 years of age. She hit the 5 year survivor mark in Oct. 2018. Treatment: Partial tumor resection in Oct. 2013, followed by radiation and Temodar. She's had 2 tumor recurrences. Went back on Temodar in July of 2017 due to tumor recurrence. This stopped progression. Started Temodar again in Jan. 2019 due to recurrence. Stopped Temodar after 1 month because it didn't stop progression this time. Had first Avastin infusion 2/22/2019. Coincidentally, my father was diagnosed with a GBM in July of 1999 and he passed on Feb. 12, 2000.

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