My husband was diagnosed with GBM in June 2018 rolling over 6 months of symptoms. The tumour was inoperable, but he had the radiotherapy and chemo combo followed by 6 months on TMZ - the only side effect he experienced was a tiredness around the second week of each cycle. After the 6 months, he was monitored 3 monthly, all scans favourable showing slight improvement each time. In April this year his usual scan showed changes and he was prescribed another course of TMZ. Due to COVID, I could not attend this appointment with him, so I’m not really sure what he was told. After his second cycle of tmz he experienced Loose bowel movements and urgency for a few weeks, culminating in an episode of chills and flushes, extreme nausea and generally feeling rubbish. He was checked out at a&e, bloods, electrolytes etc good. The nausea continued when he got home, he was prescribed 4mg of ondansetron which sorted him right out. He started his third cycle on Thursday, no ill effects until today. Everything was normal until about 10am when he started bumping into things. I sent him straight to bed and he had a definite left sided weakness in his arm and leg, and he said he felt twitchy. All through this he was conscious, no issues with his speech and his memory was the best it has been weeks. He’s still unsteady on his feet, and even walking to the loo is an issue. He says he is feeling steadier when he is sitting, but still unsteady when walking. I’m wondering if anyone has experienced this kind of thing before, or if it might have been a seizure?
Hi, where is the tumour located? Not sure about all of the side effects of the TMZ though nausea and fatigue are the most common so it could just be he's tired?
However my tumour is in my motor control centre and the only non treatment symptoms I've ever had have been twitches, muscle weakness and some co-ordination issues (no issues with memory, speech etc). My first symptom was a 1 minute long twitch in my right hand (no one would have even noticed that it was happening as was perfectly fine other than the twitch), I later found out from the specialist that it was actually a seizure, I also had other seizures where my right leg would go completely dead. I was put on a maximum dose of keppra last September and to date I've now only had 2 episodes since (I was having 2 - 3 a day before taking the keppra!) It's probably worth giving your oncology team a call though so they are aware of it.
Xp
Thanks Xpio . By way of an update he’s been prescribed an increase in his anti seizure meds. He’s got a scan scheduled for this Monday, so we’ll know more the next time we see his oncology team. His tumour is right in the centre of his brain - the neurologist who did his biopsy told us that it’s in the communication channel between the two hemispheres of the brain, extending into the temporal lobe. His mobility has improved but not to what it was prior to the episode, and it’s not clear if it is down to a potential advancement of the tumour, or if it’s tiredness. He never experienced symptoms like this during the initial treatment and prior to his diagnosis most of his issues were around higher cognitive functions like sequencing and memory, so this is new territory for us, and I’ve really been struggling this time around - not him, he’s a trooper! I’ve just discovered this forum, it’s been very helpful reading other people’s experiences. I hope you are doing well, your response to my post was appreciated.x
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