Gliglioblastoma, IDH-wildtype (CNS WHO grade 4).

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After low grade slow growing brain tumour removal, as much taken away as possible, 3 weeks ago,  we have now been told, yesterday, this has how progressed to the above.  Further Treatment will now be chemo and radiotherapy, feeling very scared. 

  • Little point telling you not to be scared…its scary!  However radio/chemo is not bad at least in my case it wasnt. Six weeks of both combined, then six months of just chemo which finished in May. I had no side effects and worked throughout. Had a clear scan in June and now consider myself cured.

    best wishes.

  • Thank you Tashie, that's reassuring to know 

  • HI

    sorry to hear about all that's going on. It's only natural to feel scared and its ok to feel scared too at this point. Our emotions are what makes us human.

    My late husband had 6 weeks of oral chemo/radiotherapy in combination and coped really well with it. The main side effect he suffered with was fatigue which kicked in around week 4 and lasted for a month after the treatment ended. He was up and about every day though. At the start his CNS prescribed a strong anti-sickness drug and told him to take it for the first week to help his body adjust to the TMZ tablets. He did and throughout he was never actually sick so I guess they helped. 

    This is a safe and supportive space so please reach out here anytime. There's 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.

    It’s always good to talk so please remember that 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 though I'm sending you a huge virtual hug and lots of positive energy.

    love n hugs 

    Wee Me xx

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