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Mum has grade 4 GBM - no more treatment

Alice12345
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Hi everyone 

My mum was diagnosed with a grade 4 glioblastoma in February 2021 after weeks of headaches. She had a crainiotomy in which the tumour was mostly resected but we were warned by doctors it would come back. She had chemotherapy (temozolomide) and radiotherapy which seemed successful. After multiple stable scans, she had a regrowth in February 2022 in 2 parts of her brain, both inoperable this time. She was put on lomustine chemo, but after another scan the tumour was still growing. They put her back on temozolomide, but the tumour continued to grow so they have stopped all treatment other than steroids and anti seizure medication. She had her first seizure a month or so ago, they started off small and infrequent but now she has them every day and sometimes loses consciousness. My family do not want to ask the doctors how long she has left, but I would like to know so I can prepare both mentally and practically with taking time off work etc. I also have a short holiday booked in September that I want to know if I should cancel. I know not even the experts can give a time but based on this information, does anyone have any anecdotal estimate based on their family members/friends experience? Thank you. 

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    Hello Alice, first of all may I say how sorry I am for what you, your mum and your family are going through.  When my mum was dying of cancer, I asked her consultant straight out how long she had left.  Whilst it is true that no-one, not even the experts, can give you an exact length of time, they can usually give an educated guess.  My mum's consultant told me she had 'about a week' which knocked me sideways I must say..........in fact she died 3 days later, but like I say, they can give a very good guess based on their knowledge of the patient and the illness.  I have seen many friends and family members die of cancer, and here are some of the signs that the end is near:  They sleep for hours and hours, they lose their appetite, they become immobile and need help getting to and from the bathroom, they become confused and agitated, and may not know where they are or even recognise their own family members.  It's an awful thing to witness, and you have my heartfelt sympathy, and once again, so sorry for what you are going through, Violet, x 

  • Offline in reply to Violetgirl

    Hi Violet, 

    Thank you for your response. I'm very sorry to hear about your Mum too, I hope you're doing okay. My Mum doesn't want to know an estimated time and I don't know how to contact her doctors on my own, but this is something I could maybe discuss with her again. But i don't think she'll like the idea of me knowing and not her, it's complicated but I also respect her reasoning for not wanting a 'death date'. But also, if it is a week or 2 I'd book that off work and spend every day with her. At the moment, she is very tired and needs help moving from one spot to another, but she is still capable of getting out of the house (with someone else). But her seizures are getting worse and the doctors have given us contacts for MacMillan nursers to come and sort her out a wheelchair and bedside commode. 
     

    again, thank you for your response, all the best, 

    Alice 

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    My brother passed away from glimoblastoma 2 weeks ago, he fought hard and with courage, we are immensely proud of him. He had similar after surgery and chemotherapy and radio, regrowth started and like ur mum scans showed nothing could be done . He was home for 9 weeks palliative care , seizures, falls, loss of arm and leg, speech , eyesight, loss of bowels, had a catheter in and last few days was unconscious, he was a absolute warrior, we couldn't be any prouder. It takes away your loved ones so quickly, we also didn't want to know, he survived 4 months after been told nothing could be done. Just be there , be calm , be supportive and make lots of memories, laugh together, smile together and tell your loved one u love them dearly. All the best, a horrible illness with still no cure- a cruel disease.

  • Offline in reply to hardlife11

    Thank you for your response. I'm very sorry to hear about the recent passing of your brother, I'm sending you strength and support. 

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