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Hello all,

I was diagnosed with a GBM grade 4 idh wildtype negative a year ago. I’ve had 95% of it removed and had 6 weeks of radiotherapy alongside TMZ, im now on Cycle 8 out of 12 of TMZ 5 days in 28. I’m feeling fine physically other than memory is bad and my left hand side function isn’t great as in if it touches anything it feels like ice is on me. I’m told There are no trials I’m suitable for. Does anyone have any experience in other treatments that I could research. 

i was given a median of 14 months to live so am currently 12 months into that.

has anyone been given such a negative prognosis and managed to live a lot longer than what they said.

i also have a gene mutation called Li-fraumeni Which puts me at high risk of cancers. My children have also tested positive so this whole journey is a nightmare. They are under a screenin programme which will detect any cancers early but is still worrying for me and my wife. 

  • HI JFish

    a warm welcome to the group. So sorry to hear about your diagnosis.

    My husband was diagnosed with a GBM4 in Sept 2020 aged 50. His tumour was/is in Broca's area of the brain and has impacted speech/language and understanding mainly. He's not had any physical impact from it as yet. Like you he had the craniotomy to debulk the tumour followed by the 6 weeks of chemo/radiotherapy. He refused all further treatment after that.

    I've come to realise that everyone here is unique, each tumour and its impact too. He was given 12-15 months in Sept 2020. That timeframe expired in Nov 2021 and he's still going strong. He's a fitness freak and in fact ran 18miles just yesterday. 

    He now doesn't want to know the expectation. His  tumour re-growth has been minimal but the cognitive decline is slow and steady. For now we live day to day and just take each day as it comes. 

    I hope that gives you a little reassurance. There's another group within the online community Glioblastoma multiforme brain tumour forum - Macmillan Online Community that you might want to join. It's a very supportive group and I'm fairly confident someone on there will be able to share their experiences of other treatment options. 

    It’s always good to talk so please remember 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.

    For now I'm sending you and your family a huge virtual hug. I understand this nightmare journey and can empathise with all you are going through.

    love n hugs

    Wee Me xx

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

  • His  tumour re-growth has been minimal but the cognitive decline is slow and steady.

    How do you characterise the cognitive decline (eg is it memory loss)? If not the cancer itself (as it is not growing), is it then the radiotherapy you think?

    im now on Cycle 8 out of 12 of TMZ 5 days in 28

    There are further treatments you could try, if you are into it you could download and read Ben Williams' latest copy, a lot to read but a wealth of information. You'd probably also need a supporting oncologist to either recommend or approve a proposed treatment. Wish you luck!

  • Hi akist

    it's 18months plus since the radiotherapy finished so its not the radiotherapy. The nature of a Glioblastoma means that there are microscopic "tendrils" working their way through the brain. These are not detectable by any tests/scans until they find a blood supply but they keep moving. I believe that they are the cause of the cognitive decline. He can no longer read more than few words, displays many symptoms similar to a dementia patient, fails to understand what you've said meaning we have to repeat it several times until he works out what you're saying. His short term memory is more or les non-existent. Its incredibly hard to watch this unfold but the neurosurgeon we saw way back at the start of this journey said this was what we could expect.

    In my own mind, I can visualise them as tiny Pacmen munching their way through. incredibly sad.

    love n hugs

    Wee me xx

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

  • Hi again, your last message is textbook cognitive radiation damage, everything I have ever read by carers and studies into effects of radiation on the CNS. In addition 60Gys into the brain is 100% chance for secondary cancers, and other very serious issues, but they do not expect you to live that long for the effects of radiation to show through. In many cases though the effects appear very quickly, a few months past. That is why I have fought tooth and nail to avoid radiation and even then to have proton beam instead as the location of some tumours makes proton much better, and in general for side-effects, as it only hits a smaller area of the brain. Of course the actual target area is history, with photons or protons. However my condition is deteriorating and I have exhausted all other avenues and I fear I am heading that way too. Radiation does two things. First it burns, literally killing all cells, cancer or not, so it does not matter if it is skin or brain or lung or whatever, you will suffer massive damage. The second way it acts, it destroys DNA. When cells try to divide, as cancer cells do, the damaged DNA causes the cell to self destruct. The faster the cells multiply (aggressive cancers) the better radiation works. Cells that sit idle suffer much less (eg no cancer or slow cancer). By the way all this is anecdotal, personal, unqualified opinion only.