Prior to GBM storming through my life like a herd of elephants in April 2021, I used to go to the gym four days each week. If I went to the gym and smashed out a decent cardio or weights session, I'd feel a little tired afterwards but be OK again about half an hour later. Since the GBM diagnosis, I feel fatigued and sleepy after a half hour gym session. Even after a one hour bike ride on reasonably flat ground, I'm still tired for the rest of the day! I used to do 2 or 3 hour bike rides involving hill climbs etc... and be OK afterwards. I should also say that, prior to the surgery to remove the tumor, I was sedated in a bed in ICU for about seven days. In that time, I lost about 18 kg of muscle (if you don't use it,you lose it). My legs were so weak, I could barely walk!!I had an MRI the other week which showed "stable disease". Is this fatigue all part of GBM or am I experiencing the results of having to rebuild all the muscle I lost in ICU? I read an article about a GBM patient called Bryan Reilly ho was running marathons, climbing mountains, skiing etc... . He sounded like a remarkable man!!! I discovered that he died in 2017 (sadly).
Has anybody else had the same experience with fatigue after exercise?
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Curious12
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Hi there, sorry to hear you’re struggling with fatigue also really pleased your scan was stable. I can only speak from my Mums experience with fatigue & what I witness with that.
She was diagnosed with a GBM May 2021 68yrs old, very fit prior & walked miles every morning with her friend at 730am played netball etc.
She had a craniotomy, radiotherapy & chemo and yes becomes very fatigued daily, especially when it’s her chemo week or if she’s in busy environments with the grandchildren / she’s hungry / trying to follow busy conversations / lots of noise / longer walks etc. She tends to have a rest in the afternoon & an early night and is so much brighter afterwards. I remember someone from the brain tumour charity saying you’ve got to look at this year after diagnosis & treatment as a ‘gap year’ you need to look after yourself get lots of rest and give your body time.Did you have surgery? Also with the ITU stay it sounds like you & your body have been through a huge huge amount so I’m not surprised to hear you’re tired after exercise. Yes you will of lost muscle from being in ITU but over time you can start to build the muscle back as your body allows..what’s the saying ‘slow & steady wins the race’. Just do a little daily & if it feels too much strip it back abit & start smaller again, pacing yourself and leave the rest of the day to rest if it’s a day where you’re doing some exercise. I’m sure it must be very frustrating given ow fit you were prior…it’s a whirlwind isn’t it after diagnosis. Whole world turned on its head!
The brain tumour charity run some great online sessions via zoom with one their counsellors or support workers and there is one on ‘fatigue first aid’ which I found really useful. Fatigue seems to be one of the big things with GBM & the treatment from what others with tumours have said on the groups.
Hi, thank-you for your reply. I collapsed at home and was rescued by the Police after work became concerned by my absence. I was found unconscious on my bathroom floor - I apparently was running a hot shower when I collapsed. When they did the surgery, they did a Craniectomy which means they removed a section of my skull to allow for brain swelling. The hole in my skull was covered by a flap of skin from my scalp. As well as GBM, I have CLL (Chronic Lymphocytic Leukemia) too. The CLL caused my blood platelet count to go down. The TMZ chemo has further damaged my-platelet count (its down to 60 - yours is no doubt around 200). The surgeons won't do the Cranioplasty to replace the missing skull. FYI: Living with a Craniectomy is the most uncomfortable experience. Exercise causes the skin flap to sink in. With the hole in my skull being located near the front of my right ear, I can feel the sunken skin flap pulling on my right ear all day. It sort of serves as a constant reminder of my impending doom. I've been having treatment for the CLL however the treatment doesn't seem to have worked since my platelet count is no higher. The surgeons won't do the Cranioplasty until it goes above 100. My oncologist has delayed the second round of chemo until my platelet count has improved. I imagine, this delay is doing little for my long term prospects.
Hi Curious12,I was diagnosed with GBM in November 2020, it has been a strange year or so. I too was very gym and playing rugby now leg muscles have gone AWOL and walking a mile or so is hard work. I am told steroids are main cause . In the same unfortunately fatigue is really the only side effects that has hit me. Weirdly consider myself lucky in comparison to most sufferers from the dark passenger we possess
I've been on Dexmethasone in varying quantities since April 2021. My Oncologist was trying to use it to up my platelet count but that hasn't worked. It has shrunken my lymph nodes so I no longer have big lumps under my jawline - it's an ill wind that doesn't blow some good.
Hi. I went from running marathons with PB of just over 3 hours to struggling to walk 5km after GBM diagnosis. I have put on a lot of fat as my energy levels and ability to exercise just totally collapsed overnight. Though it's easy to forget, treatment is probably/ hopefully the hardest "work out" your body will ever go through,
I was diagnosed with stage 4 glioblastoma mid Aug 2022
My situation is different to yours (obviously), in that I had long covid fatigue for 2.5 years prior to my cancer fatigue
My understanding is that brain tumours in themselves cause fatigue
I can't separate the LC fatigue from the cancer fatigue but I find following exercise (I've been told not to 'exert' myself by my medical team) I often need to spend the next day resting but not necessarily sleeping.
I'm aiming to participate in the London marathon but if I can do this, likely to be walking rather than running
Prior to covid and its consequences I was a regular runner although was never going to break any speed records 🙂
I had recently started training with weights and had a session on the day I was admitted to hospital
As I'm sure you know radiotherapy results in fatigue too.
I'd be interested to hear how you are currently since your original question was posted a few months ago
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