Immunotherapy

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Hi all. My husband has been diagnosed with a glioblastoma and has had surgery to remove roughly 75% three weeks ago. Has anyone here tried immunotherapy instead of radiotherapy or both? If so where did you go and was it a positive outcome? Many thanks 

  • Hi Clare

    a warm welcome to the online community. So sorry to hear about what you and your husband are going through. I can empathise with your journey as I supported my late husband through his Glioblastoma journey.

    The standard treatment offered in 6 weeks of oral chemo (TMZ) in combination with radiotherapy. G coped well with that treatment regime at the time with the only side effect being fatigue that kicked in around week 4 and lasted for a month after the last session. We were never offered immunotherapy and to be honest I don't recall many folk in the Glioblastoma group ( Glioblastoma multiforme brain tumour forum | Macmillan Online Community) saying that that was what they were offered either. 

    The people who are best placed to discuss this with you both are your husband's medical team. Everyone on this journey is unique and every tumour impacts people differently. Unfortunately there is no "one size fits all" treatment solution here.

    I have found a couple of articles that might help you here-

    Glioblastoma treatments and trials - Brainstrust, brain tumour charity

    Brain cancer patient doing well after world-first immunotherapy treatment : University College London Hospitals NHS Foundation Trust (uclh.nhs.uk)

    Final results of brain cancer clinical trial published | King's College Hospital NHS Foundation Trust (kch.nhs.uk)

    This is a safe and supportive community so I am sure that some of the others will be along shortly to share their words of wisdom with you. 

    A Glioblastoma journey is an emotional rollercoaster ride for all involved so please reach out here anytime. There is always someone about to listen 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.

    Please also ensure that you are taking care of your wee self here and taking time where possible to recharge your batteries. Taking "me time" isn't selfish. Its essential to helping you cope with the journey ahead.

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

    Love n hug

    Wee Me xx

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

  • So very sorry to hear about your husbands story. Thank you so much for your kind words and also the articles you attached. I will be spending some time reading through them all. 
    Hugs to you too. 

  • Hi Clare,

    We've been following Prof Richard Scolyer, from Australia ,who is trialling an immunotherapy for glioblastoma on himself. My fingers are crossed.

    Take care and sending you hugs

    Tina

  • Hi Tina,

    Yes its extremely interesting to follow, my fingers are crossed too.

    Take care