Looking for a bit of Glioblastoma experience

Hello Forum Members

I am new to this forum, and very new to the idea of living with cancer. I am looking for a bit of experience, and just a little bit of insight if the truth must be told.

My 52yr-old wife is in the 5th week of radiotherapy and Temozolomide. We have 6 sessions to go, and then - mercifully - she has 4 weeks off before an MRI and then a further 6 months of Temozolomide. In February, she sucessfully underwent a gross resection of the tumour, and for a brief period, she had some respite from the speech challenges that a Temporal Lobe GBM causes. Of course, that has now profoundly returned as the radiation 're-injures' her brain in the quest to eliminate the remaining malignant tentacles of the tumour.

I know that this doesn't end well, especially now that we know from gene sequencing that we do not have any 'friendly mutations' in order to expore other avenues of treatment. What I'd like to hear a little bit about is how this goes from now, some real stories. We are told that at the end of the 4 week break, she will start to feel well again, but we know that the tumour is almost certain to return despite all effort to the contrary.

I sincerely appreciate any thoughts or experience.

G

  • Hello Gareth75 and welcome to the forum. 

    I'm sorry to hear about your wife's diganosis and everything that has been happening for her. It's obviously a very difficult time for you both. 

    I don't think we currently have any active members with glioblastoma although if you use the forum search function you will be able to see lots of previous posts that may offer some information for you. 

    I did want to suggest that you had a look at The Brain Tumour Charity website and also the Brains Trust website as I know that they both have active support forums and I'm sure that you will be able to connect with others in the same situation via those organisations. 

    We do have a team of nurses here at Cancer Research UK and if you'd like to talk through your situation with them you're most welcome to call. I'm sure that they would be able to offer some support and information. They are available Monday to Friday 9am to 5pm on 0808 800 4040. 

    I hope that this helps. 

    Best wishes, 
    Jenn
    Cancer Chat moderator