Glioblastoma- grade 4 brain cancer

  • 30 replies
  • 64 subscribers
  • 4212 views

Hello everyone,

Approx 5 years ago I was on this forum looking for hope for my mother who was aged 49 diagnosed with GBM- grade 4. The news was devastating, the fear, the anxiety, the anger… it was the most overwhelming time of our lives. I wanted answers and got researching straight away, the statistics the prognosis only made things worse on my end and I was just desperate for a glimpse of hope. I remember being on this exact forum looking for survival stories, anyone, anything would have put my heart perhaps at slight ease. I am now here today to tell you our story and maybe it’ll give someone else that breath of air that we were so desperately looking for. 
Following the loss of my grandad my mother went through a period of grief. She presented with symptoms of depression, lack of appetite, loss of motivation, fatigue and changes in sleep. We didn’t think anything of it at the time until she had a private brain scan that revealed two tumours with unimaginable amount of swelling. Immediately, it was surgery followed by 6 weeks of radiation and 1 year of temozolomide oral chemotherapy. My mums chemo therapy ended over 3 years ago and since then her condition has been stable. In October it will be 5 years since her diagnosis and whilst having difficulties with short term memory, processing information, personality changes and more, she is alive and with us.

This is a cruel illness and it weights so heavy. If you are reading this; please don’t lose hope. I want to send love and light to everyone who has experienced this horrible illness first hand or through a loved one. I wish everyone strength on there journey.

best wishes x

  • This is fantastic news 

    Thanks for the update and will give others much needed hope.x

    Madesp 
  • That is amazing and yes definitely gives hope. My husband has a grade 4 tumour and I've done the research it's so depressing. He has had surgery now waiting for next treatment for this cruel, cruel illness. Thank you for taking the time to post to give others hope. X

  • Thank you for your post and for giving us hope. My husband has just been diagnosed at the same age, and started his radio/chemo journey yesterday. He's been incredibly resilient and brave, and has recovered incredibly well.

    Research has shown that younger age is the biggest predictor of long-term survival for GBM patients, and most people who do survive long term are under 55 at the time of diagnosis, so I am hoping we have some good years ahead of us.

    Sending lots of love to you and your mother, and may she have another 5+ years with you!

  • Hi, thanks for sharing your story.  I’m new to the forum, and I’m here as my mum has just been diagnosed with a glioma. We were on holiday at the time when she became ill, and after two CTS and an MRI they found a glioma in a frontal lobe.

    She’s been in hospital a week now, and they have started steroids, but we’re still waiting for the MDT before they will decide on a plan.

    I have just been informed that this may be another week. That’s 10 days since the MRI confirmed the glioma.  The sister on the ward just said ‘this is the NHS’.  

    My world has been turned upside down and I am desperate for things to move more quickly. However I just want to ask the community, in their experience is this wait to the start of treatment normal?

  • Thanks for sharing that, i am 45 and I was diagnosed with a large stage 4 glioblastoma recently and have had surgery to remove 98% of the tumor. I am currently waiting for radiotherapy to start alongside chemotherapy and then chemotherapy for 6 months. 
    I was on here looking for exactly this kind of positive story to draw some inspiration from. 
    I have been very lucky so far in that I have only had headaches and tiredness as symptoms. 
    I am really hoping to get through the radiotherapy with only minor side effects which is another reason I was on here scrolling looking to see if anyone manages it.

    sharing your story has helped me so thank you so much. 
    all the very best to you and your mum. 

  • Hi, I was recently diagnosed, it took a month from diagnosis to operation. Now waiting another 7 weeks for radiotherapy to start and I feel from talking to doctors  and nurses it’s a pretty normal timeline. I have a few scans and appointments in the meantime.

    best wishes to you and your mum 

  • I've stayed away from here because I am struggling so much and honestly I'm afraid to ask anything. My husband who has stage 4 brain cancer suggested I try again.  Your post has given me hope.  You are a blessing to me. Thank you and a hug to you and all your family PrayPray

  • HI Mypies and everyone else

    please be reassured that the online community here is a safe and supportive space. You're never alone. We' re all here for each other

    My husband was diagnosed GBM4 in Sept 2020 and this community really has helped me through these past 23 months. That was partly why, even though we're still on the rollercoaster from hell, I felt I wanted to become a community champion and give something back.

    If anyone feels too shy to reach out here, please message me and if I can help and support I will. At the very least, I can listen.

    sending love and light and hugs


    Wee Me xx

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

  • how are you getting on with chemo and RH, similar thing and the 5.5cm tumour was found on my 44th birthday, 6 weeks ago and was removed last week, have a meeting on Thursday with the consultant to see how much was removed.

    how did you find the steroids?

  • Sorry its taken so long to respond.  My husband was fine with the steroids. He did lose his muscles.  Biggest scariest problem was coming off them , we later learned from the oncologist that he was Prayaned off them far too quickly.  The side effects were horrendous.  Somethings we had not been warned about.  Seems the particular hospital are renowned for stopping steroids too quickly.  Good luck.PrayChemo and radiotherapy is OK. He was very tired and trying to fight it. Now suffering with constipation and nothing seems to help! Hopefully tomorrow when we go they can give him something stronger.  It's breaking my heart.....