Oligodendroglioma grade 2 treatment

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Hello, I'm 33, had two seizures out and about leading to CTs and MRIs of a mass Sept 2023. Surgery the following week with biopsy results showing incurable grade 2 oligodendroglioma idh mutant and co deleted. Post op I lost all motor function left side of my body, slowly came back after 5-6 weeks. Was on the list for rehab and then it just sort of happened. Saw oncology January, for active surveillance and wait and watch. Had seizure end of January 2024 then one February 2024 too. MRI shows no changes or progression though. The thought is now split, but to possibly go for radio and chemo now rather than wait for MRI changes. So many questions. Was wondering how your experience has been. 

  • Hi, that’s a lot to share, thank you. And a lot of uncertainty. But that’s great to hear that your motor skills returned, and that your last scans looked progression free. Can I ask what kind of seizures, I mean how they manifested themselves?

    I was diagnosed with a stage 4 astrocytoma IDH mutant methylated in May 2022, after a seizure in which I was unable to talk or understand people. After the op, radiotherapy and chemo, I’ve had one more seizure but Keppra seems to keep them at bay. 

    I hope you stay in touch with news of what decisions you go with - and how you’re coping with it. What works to keep calm? Friends, hobbies, TV and my cat are working for me but everyone’s different!

    sending all good wishes and a hug if you want it, Alex x

  • Hello, thank you for your reply, hope you're well!
    Post op seizures I both get aura and my left hand goes numb, no control and dystonic.
    First one I went full tonic clonic for 6-7 minutes, and lost left hand side arm and leg for an hour
    Keppra was titrated to 750mg twice daily.

    Next seizures again aura, out of body experience, left arm goes numb, no control, hand dystonic, no convulsions, more a tonic seizure, but with a loss of consciousness. Lost power again afterwards maybe 30-45 min.

    Since, keppra titrated to 1g, so far so good, but im not naive. Can then understand why the plan for rx and chemo which is ok, its just getting my head around it all and the side effects and worries.

    Feel like if something is there, I should try my best and go for it, I have gained weight and am healthier since diagnosis. Finding things difficult with fatigue, so I don't want to do much. I used to be very active and outdoorsy, and a paed icu nurse, so it's all a HUGE change.
    I would love a cat, but as im back with mum and dad it's a big no.. for now! :)

  • How have you been recently?
    My name is Alex too :) xx

  • Hi again!

    ICU nurses are the crème de la crème - I take my hat off to you. I guess you know all the facts about rx (thanks for that, I didn’t know there was a shorter word) and chemo, but if you want to vent at any point, please do. I remember thinking I was a superhero until three weeks in, when I started to feel it, but apart from the nausea and fatigue it was bearable.

    Hope they’ve got your Keppra sorted now - I think mine are focal seizures maybe, so nothing too dramatic, but it’s all a bit scary isn’t it? Thanks for sharing about that x

    sorry about the catlessness - that’s tough! But parents are more useful in a pinch Slight smile

  • Hi Alex! Wave (Just saw this)

    I’m actually ok, mentally and physically, and trying to be as happy as possible while I can. I have bouts of anxiety but tbh I always did so it’s hard to tell the difference. Thanks for asking! Xx

  • Aww bless. Well thank you. I’m mainly in children’s and with the little ones so adult land has been SO different and hard to get used to! I don’t know if being a nurse makes it better or worse. But I’m so determined to get back. Even if icu isn’t forever, just to prove things to myself. 

    Thank you for your honesty around treatment! I’m most worried I’ll have worse seizures bc of it. But we’ll see! Was it the week 3 of radio you found hard. I’m scared for the whole thing to be fair. But I learnt to walk again and after all of that, nothing could be as tough. Could it? Just side effects and the idea of another inpatient stay… no thank you!

    I don’t know if the keppra will ever be ‘right’ as I’ll always have or be at risk of seizures so I don’t really know. 

    we sound similar. I think the anxiety of seizures and how much I’ve lost control of things are the most difficult! Yet before I would have been a wee sensitive soul and anxious too. Tho was that tumour symptoms too, we’ll never know. 

    Always here to chat or vent too! Will happily take any experiences or advice regarding radio and chemo treatments x

  • I do hope you get back to ICU again, and with kids too - that must be upsetting but incredibly rewarding.

    Ask anything you like about treatment! You said you’ve gained weight are in good health so that’s the best way to start, in case you lose your appetite for a while later on. I was scared too, but the people at rx were so sweet, and it was over in minutes, so the fear didn’t last long. Yes, three weeks in I started to get queasy and tired, but it kind of plateaued in the last week, and started improving gradually a few days after the treatment stopped.

    wee sensitive souls! Heart️ Life is tough on us right? Plus I’m 52 and going through the menopause, so like you said, I don’t know what’s causing what! Rolling eyes

    I’ll keep you posted if I think of anything helpful, and chat any time x

  • I’ve kept a blog of mine on here if you want a read. 

  • Hi, my partner is 30 got diagnosed with oligodendroglioma grade 2 from having 2 seizures in 24hours. He had surgery just over a month ago now and has been recovering well apart from focal seizures- it starts with his left hand clenching and not being able to open it and then his jaw starts twitching, it last about a minute and after wounds he is unable to talk for a minute then he’s fine and it’s like nothing happened. He haven’t started any treatment yet waiting for appointments but don’t know what to in the mean time. Hope you are doing okay 

  • He is on Keppra sorry which has been stopping his seizures 1500mg in the morning and again at night.