Clinical trials for GBM and support

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Hi All

First time here after being signposted by Macmillan chat advisor. 10 weeks ago today i had a seizure and three weeks later surgery to remove it. I was told the resection went well and next week start my second of six weeks radiotherapy. Due to my tumor type being a Grade 4 GBM un metholated so standard treatment may not be as effective. 

I am taking a trial AZD1390 is there anyone on here doing the same trial? 

Is there anyone on another clinical trail for the same type of tumour?

I thought i had held things together so well but the last two days i have been very low and quite emotional would be great ti speak with anyone about emotions or even how they feel if on this trail combined with radiotherapy

Thank you

Garry

  • HI Gazman

    a warm welcome to the group. Sorry to hear about all you've been through.

    My husband was diagnosed GBM4 in Sept 2020 at the height of covid and to be honest, clinical trials were never mentioned to us. He coped really well with the 6 weeks of oral chemo and radiotherapy but at the end of that he decided he didn't want any further treatment so nothing else has been discussed with us since.

    I believe that the clinical trials options vary from health board region to the next but it's not an area I know much about. The best people to talk to are your medical team.

    This group is a really safe supportive space so I'm confident that some of the tother members will be along shortly with their words of wisdom. You could also reach out through another group that I've drawn a lot of support from - Glioblastoma multiforme brain tumour forum - Macmillan Online Community

    For now though I'm sending you a huge virtual hug and positive vibes. I hope the remaining few weeks of your current treatment cycle go smoothly.

    love n hugs


    Wee Me xx

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

  • Hi Garry, My husband was recently diagnosed 2 weeks ago. He is starting treatment on the 17th -“and we asked about any trials, but none offered. We are in Aberdeen, what area are you from? 

  • From what I have learnt it comes down to tgey status or type of tumour. I am no expect but ask your oncologist what options are available. Sadly there a few but as my tumour was un methylated I was offered a trial as standard therapy with temozolomide would be less effective 

    I am in Cambridgeshire and the trial is run in my hospital also other parts of the uk. Trials can be found on cancer research uk website but as said there are many many factors so your oncologist is always first point to discuss

    good luck and I do truly wish you all the best of love