Can you regain any fitness after gbm4

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Can you regain any fitness after gbm4

by Macpudd on Sat Dec 29, 2018 12:04 PM

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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.

RE: Can you regain any fitness after gbm4

by Mack1994 on Fri Jan 04, 2019 04:51 PM

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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.

Hello Macpudd,I do not have GBM, I was diagnosed in 1994 with stage 2 oligodendroglioma. I have been on temodar which gave me ten years without recurrence, but I developed a problem with fatigue, however, I was able to continue working without performance issues, but quite often I would come home from work and have to sleep for about an hour before dinner. In December of 2016 I had recurrence of tumor growth, but this time it was Grade 3, had total resection in February 2017 followed by 33 radiation treatments and 6 cycles of PCV, each cycle 42 days in length, and I was wiped out, fatigued all the time and had no strength and developed chemo brain, could not focus or concentrate and I had to retire.

I finished the PCV in May of 2018 and two days after I finished I developed shingles and had to be hospitilized for ten days in isolation, on the most uncomfortable bed in existence. 

When I started the radiation and then chemo I weighed 178 lbs, when discharged I weighed 148lbs and was severely deconditioned, at home I would try to do what I could, I would walk every day and try to accomplish some type of chores either in the house or yard, but I fatigued very quickly especially in the heat, and like yourself I was very discouraged and down, had no appetite but made an effort to eat, after which I would sleep for anywhere from 2 to 4hours a day.

In October, with my labs having improved my Doctor cleared me to participate in the Live Strong Program at the YMCA. It is specifically designed for cancer patients, starting with light hand weights , walking and isometrics, it was two evenings a week for twelve weeks.

Whe I began my concentration was poor, I had no coordination and no interest in reading, which I've always loved to do, but now it's a new year and I am going to the gym three days a week, and I'm slowly gaining strenth and my interest in reading has returned and I,m able to perform house and yard chores to a greater extent.

It all takes so long and is a drag at times but some of the best advice I've got came from another cancer patient and he said you've got to think of recovery in terms of weeks and months, not days and weeks.

You've been through alot, and all I can really say is keep on doing what your doing, and some of your ability will return if not all.

My mantra is keep on keeping on and it does get better.

My best to you!

RE: Can you regain any fitness after gbm4

by Macpudd on Fri Jan 04, 2019 08:06 PM

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Thanks for the reply Mack. I have an MRI on the 30th Jan so hopefully I will know more, lart MRI  result said I had white matter damage whi ch might cause lack of concentration. Was talking to oncology yesterday  because two of my front teeth broke on Wed, both types of chemo have caused dental problems, oncology say that it will be some months until chemo is fully gone. You have benn through a lot yourself, and still are vrey positive which in turn encourages me, thank you.

RE: Can you regain any fitness after gbm4

by nelsonel on Fri Feb 08, 2019 06:24 PM

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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.  

RE: Can you regain any fitness after gbm4

by Macpudd on Fri Feb 08, 2019 09:13 PM

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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 

RE: Can you regain any fitness after gbm4

by nelsonel on Sat Feb 09, 2019 05:13 AM

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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. 

RE: Can you regain any fitness after gbm4

by stevew7000 on Tue Feb 26, 2019 08:27 PM

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hi Nelsonel. Great to see that your mother even at her age has reached 5 year survival, though unfortunate about her recent recurrence. I was wondering if there is -- since you have a family history of brain cancer from both sides -- a protocol to have your brain scanned routinely to catch any abnormal disease early on?

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