Gbm4

Hey all

My husband was diagnosed with Gbm4 in 2009 he had it removed and had chemo after surgery.. He had a recurrences in 2014 had surgery to get it removed they found a 2nd tumour when he was been operated on they also removed that he had radiation after surgery. He had a heart attack in 2019 and another recurrence in Jan 2020. Because of the heart attack they can't operate this time he had more radiation in April 2020 which didn't work.. He started Avastin in Oct 2020 and is getting it every fortnight for as long as it works and his body can handle it.. He is under the care of palliative care also but his headaches are there all the time he was on steroids which he was taken of as they didn't agree with him he was on them best part of a year. But since Xmas he has no great appetite and sleeps quite a bit no energy whatsoever.. I just feel like we are hitting a brick wall all the time no one seems to have answers he's only 35.. But for someone who was always full of energy needing barely no sleep to sleeping all the time it's scary watching it he's so positive which is great I'm just so worried for what the future holds I'd rather know if this is a decline but the docs keep saying its treatment n tablets and the palliative care say by the sounds of his headaches the treatment isn't working. We have 2 young kids which is hard on them. I just feel so lost with it all and don't know what to expect next.. 

  • Hello Sami-joe and welcome to Cancer Chat! 

    I am so sorry to hear your husband has been going through all this at such a young age. Poor him having had so many recurrences  followed by a heart attack in 2019 and then yet another recurrence. What a fighter he has been. It's such a shame though that they can't operate this time because of the heart attack and that the radiation last year didn't work. I can imagine these headaches are rather debilitating though for him. It sounds like since Christmas things have been even harder for you and that you are now obviously desperate for answers. Seeing him with so little appetite and sleeping so much must be heartbreaking for you and you must be exhausted too having two young children to look after. 

    I hope that you will get the answers you need. Talking to his consultant and the palliative care team is obviously the right approach but I can imagine it must be frustrating for you when the answers you get are not quite the same. If the treatment isn't working for his headaches, is there anything perhaps that they could suggest to make sure he gets adequate pain relief for these? This is something you could ask maybe his specialist and I hope that they will be able to help with that and also that they will tell you more about what to expect next. You might be interested in reading our information page on glioblastoma and if you wanted to have a chat with one of our nurses about anything, they have a free helpline you are welcome to ring. The number to call is 0808 800 4040 and you can ring them Monday to Friday from 9am to 5pm. 

    I hope that you hear from some of our other members who have also looked after a loved one with glioblastoma and that they will be along shortly to share their story with you. It can help to talk to others who understand exactly what you are going through at the moment and who will relate to this feeling of being left without answers, not knowing what to expect next.

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • My husband was first diagnosed in 2009.

    Recurrence in 2012, 2018 and 2020. It's a nightmare.

     

     

  • Hey it is a nightmare how's he doing now