Husband 52 going through GBM 4

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it’s my first time in this group. My husband, 52 years old had a seizure in Apr 22 while walking along canal side and was rushed to hospital in ambulance. He underwent various tests and was diagnosed with brain tumour. Jun22 he had his surgery and later it was confirmed that it was GBM stage 4. He started his radio, chemo in aug for 6 weeks and later he was put on temozolomide. In Jan 23 it was found that the chemo wasn’t effective and he has to undergo another surgery. 2nd surgery was in Feb 23. Later they started on alternate chemo Lomustine which went on till May but that also wasnt effective. But till this time physically, mentally and emotionally he was quite strong, fine and positive. In jun 23 he had another seizure and was admitted in hospital. His anti seizure medication was increased. He underwent another round of radio in July 23 which as per the doctors was the last possible option. He was also put on steroid. From then I hv seen he is slowly going down. Physically he is still independent but he doesn’t want to go out for walks, difficulty in getting the right words. So doesn’t really talk much. Sleeps a lot 16-17 hrs. Wanted to know if anyone has been in this situation. I work full time from home. So can’t sit and talk with him during the day or can’t really find something to do. Wondering how/what people in similar situation have done. 

  • Hi - I'm 59 with GBM. These are questions or your oncology team.

    What did the last MRI show ?

  • Hello. As per last MRI tumour was stable. Neither increase nor decrease. This is as a result of the radio. They are doing monthly scan now. He had one on Friday 

  • The 2nd lot of radio could well have increased swelling. I would ask about visible edema

  • You are right. Edema is there which is why they are not reducing the steroid dosage. 

  • Hi Jyo

    a warm welcome to the online community. So sorry to hear about your husband's diagnosis. Life is too cruel for words at times,

    My husband was diagnosed GBM4 in Sept 2020. He was 50 at the time and a total fitness freak (marathon runner). He had the initial surgery to debulk the tumour followed by 6 weeks of oral chemo/radiotherapy in combination then refused all further treatment offers. It was a decision I had to respect.

    Right from the outset G's understanding, speech and communication skills were compromised partly due to a massive seizure two days before his surgery and partly due to where the tumour was located. He quickly lost the ability to read and following TV shows and films became a challenge too. 

    I'll not waffle on- most of the story is in my bio so you'll get the gist of it.

    I have also worked full time from home since G was diagnosed but he rarely wanted to sit and talk. Denial became one of his key coping mechanisms. 

    There are no hard and fast ways to cope here as everyone is unique. These tumours impact everyone in different ways. G was lucky in a way that he was still able to follow his fitness regime right up to a few days before he passed away. If he'd lost that physical ability that would have made things so much harder on us all as he lived for his running etc.

    This is a safe and supportive community so please feel free to reach out here anytime, There's always someone around who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear

    Please make sure that you take care of yourself here too and take time to recharge your batteries. I'll not lie, this can be a gruelling rollercoaster ride for all involved. Taking "me time" isn't selfish. It's essential to allow you to be in the best position to support your husband as you can so go to the gym, go for that coffee or take time to read that book.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  •    thanks for your message. There is lots to ask you but I just read through your profile and sending you a big big hug. Hope you are taking care of yourself. My questions can wait