glioblastoma stage 4 brain tumour

Hi just looking for some advice and information !

my auntie was diagnosed with glioblastoma stage 4 brain tumour, it will be 2 years this April we found out . I’ve read that the life expectancy is 25% survival rate after 18months and for 5 years 5%. She has done fantastically well and I’m so proud of her ! For the past 2-3 months she has been confused and getting worse. Her speech is bad to the point I struggle understanding what she is saying, to anyone who doesn’t know her wouldn’t be able to understand her. She has been getting dizzy and has fell twice this week thankgod she was home and my mum was with her . I’m fed up of not knowing anything the hospital hasn’t told us how long she has left or what to expect I fell like we are left in the dark. She has been offered the last lot of chemo which she has till March to decide weather she wants to  have it, but doctors say it’s only 10% of it working, think she feels like they have given up on her. If anyone has gone though this, I’m wanting to know what the last stages are and what to expect any comments will be great fully appreciated ! 

Thankyou x

  • Hiya. 

    I'm so sorry for your situation; im in this boat too. My FIL was diagnosed with 10+ brain mets from primary lung last May, declared terminal and untreatable in July 2018. He was given 8-12 weeks to live, and shouldn't have seen November, but he's still going. He was up and about but with some cognitive issues at Christmas. Getting words muddled, that sort of thing but largely okay.  

    It's so unpredictable, it's really difficult to tell how long and with what symptoms. The information we've been given hasn't been anywhere near enough for us to plan with but our plans would have been shot out of the water anyway as he's lived so far beyond what we were initially told.

    Our palliative care team are now saying weeks left, not months. He's in bed mostly. I think he's gone from being in bed until 1pm to only coming donwstairs twice in the last week. He's Confused. Stuttering. Starting to eat a lot less, and as of last night having vision problems. Most of these issues are intermittent and there are the odd glimpses of lucidity. It's awful to see.   

    I'm posting periodic updates on his condition for just this reason - there are no details out there about how things could prossibly progress towards the end. I'm hoping the information in my posts might help someone else at some point. 

    Love to you and your family. x

  • Hi close

    I read ur post and i just had to reply. My dad is noe in nappies and this week barely eating but still appears to know whats going on amd then suddenly doesnt. I feel suddenly scared. He has held on for 3 yrs . I found out today its the brain swelling do u have experience of this. Worst thing is there r some horrific family problems anyway hope all ok love corinna xx