Hi, my dad was diagnosed with a glioblastoma about 4 weeks ago. He has gone from being a fairly healthy 58 year old man who travels around the UK and holidays a few times a year abroad to a man who sits on the sofa refusing to go out or do anything. He has got a healthy appetite but is eating way too much sugar.
He appears to have given up and does not want to have surgery or any treatment. He said he has done everything he wants to do in his life. He doesn’t seem depressed. He actually seems fairly content, but I’m really struggling to see him like this and not want to fight.
The Hospital told us he probably only has a few months left to live without treatment but I have read of people living longer with GBM. I am caring for him with my brother at the moment. He lives 5 hours from us so we are travelling back and forth to his house to stay with him at the moment so he is not on his own because before he went in to hospital he was really confused and his mobility was not good. This has improved with steroids but we don’t want to leave him as he is at risk of seizures and his mobility and memory could deteriorate quickly again.
We have spoken to Macmillan and palliative care but they have not been very helpful in terms of support for him at home. Palliative care said he could get a nurse in once a day. We can’t continue to stay with him forever though. I have 2 young children. Does anyone have any advice please? Thank you.
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KerriC05
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Hi kerri, This was the same as my dad. He was told it was very aggressive and untreatable due to a misdiagnosis of TIA and dementia. We were told 3 months. He passed away on 22nd May, almost 3 months to the day from finding out. I too live 3hrs away from my parents, have 2 children, 2 jobs and a single parent.
All I can suggest is make the best of the time you have with your dad. Put as much as you can of your life on sidelines and cheesy as it sounds just make memories hanging out with your dad. Talk, laugh, accept what's happening, don't try changing how your dad feels or thinks, he is the one dealt this shitty news.
It isn't at all easy, but every day, every chat, every moment together will keep those memories alive.
Thank you for this. Really appreciate your advice. Can I ask how your dad was at the point of diagnosis and how he was as he deteriorated? My dad seems ok generally but a little confused and lacking motivation to do anything and look after himself. I am not sure what to expect and how quickly he may deteriorate? Thanks
Mu dad was the exact same. Personal care was very poor, he would attempt to shave with toothpaste, shampoo anything he found! He was a nightmare to change clothes and dribbled a lot. He also couldn't talk properly which frustrated him and knocked his confidence. He was up and down on accepting his diagnosis to start with.He was still able to walk, with a slight limp for first month or so and we would always go out for long walks, he had friends who rallied round to walk with him when I had to go home.
The meds made him eat...a lot and he developed an addiction for chocolate!
In fact he got obsessed with random things. Which could cause stress when he struggled doing them.
It wasn't until the last month that he would just stay in bed a lot sleeping, and only get up to eat. He became rather aggressive too. He went into a hospice for a med change and that was it.
The last 3 weeks he declined very very rapidly.
Please private message me if you want to.
It's so recent and quite raw for me,but I know what you're going through Kerry.xx
I think it can be a lot to with the meds . My dad slept a lot in his last month or so. But everyone is different, depending on where, how advanced etc. I think the confusion also led to dad thinking it's easier just to sleep in the end.All the best for your brother, just be there for him, and let him sleep as he wants would be my suggestion. X
Thank you. We've just had his funeral on Thursday. My sister also passed away in January from lung cancer diagnosed last may after misdiagnosis of copd during covid. So a very very tough year for me.
Hi there I have just lost my husband who was diagnosed feb 2022 so he lived for 2 years 4 months he was 58.He had the craniotomy the 6 weeks radio and chemo but wasn't fit enough to have any further treatment. The first year was awful as he just ate and drank copious amounts of coke chocolate crisps cake as he never got off the steroids- dexamethasone is the worst but best for reducing inflammation.
He tried being positive but he was never the same we did loads of things but for him every day was a struggle and at least he is at peace now.
I'm not sure what the best way of coping with this dreadful disease is but we've also just lost a neighbour who was 48 years old and he only lasted 10 weeks. So I think just do as much as you can whilst they are alive as you just don't know how long you have.
My husband was 55 and he lasted only 3 months. I’m glad he is not suffering anymore but very sad for my 3 kids and myself. It’s a terrible disease going from a happy healthy young man to someone you don’t know in 3 months and pass.
We are as ok as we can be. I miss him everyday, but unfortunately this is life, and he was such a realistic person and never said why me. I’m trying to raise my 3 kids and make him proud. He asked me to take care of them and this is my goal. I wish you all the best. Take care of yourself
I am really sorry to hear about your dad. Talk about GBM is always negative but as you have said yourself there are positive stories. I was diagnosed with GBM nearly 4 years ago and was also given 3 months to live without treatment. I didn't even think about not taking treatment. I have a positive attitude and felt I could fight it. I had radio therapy and chemo and a year of chemo after that. I got off the steroids as soon as I could. I am now leading a normal life and doing the same things as before. My only treatment now is anti-seizure pills and 3 monthly scans.
I am positive and have a family that have been tremendously supportive. I hope my story could be helpful to your dad in showing that positive outcomes are possible. I think a healthy diet, exercise and above all a positive outlook are very important.
I am very happy to hear that you are doing well . My husband was diagnosed with GBM last Novemeber. He has done radio therapy and now is on TMZ for 6 cycles. But his inflammation is not going down so he has to stay on 4mg dex for now. The doctor suggests that he should take Mvasi infusion. Can you share your story with me - how you felt in general during your treatment time. My husband tries very hard to stay positive when he is not able to read and confuse at time. Wish you all the best.
After my initial diagnosis I was in hospital for 4 weeks all of which I don't remember. I gradually regained awareness but was unable to talk much and couldn't read. I was determined to get fit and tried to read every day. After being discharged from hospital I rested with small walks. It was hard at first but I gradually got stronger and my reading and talking improved. I managed well with the treatment. It took a good year to feel reasonably my self. A positive outlook, good diet and family support have been my saviour.
I was diagnosed with my grade 4 GBM in May 2010, had it removed by surgery and went through the standard cycle of treatment. So it is possible to live beyond the prognosis for a grade 4GBM.
Can I refer you to some of my previous posts and replies I have sent to other people in a similar situation, which you might find useful.
Diet is a key component to fighting this disease, so it is important that your dad cuts out all unnecessary sugar, which feeds cancer cells and eats a health diet of fresh meat, fish, veg and fruit.
Blueberries, pecan nuts and turmeric spice have anti-cancer properties, so should be included in his diet. He can also boost his immune system by taking supplements, I have been using Higher Natures Immune Plus tablets and their Complete Omega tablets, which are also good for the brain since 2010.
I know it is a difficult time for you all at the moment, but it is important to remain positive and believe that it is possible to get through this with a positive outcome.
Another important point for your father to consider is that 'all life is terminal from the moment it is created'. Just as my life was before my diagnosis in 2010 and it is just as terminal today as it was on the day I was born.
Staying positive, talking and laughing as much as possible at the moment, with a eye open to a future ahead of you, worked for me and may certainly work for all of you.
If you have any questions about my experience, etc, please do get in contact.
A final point I need to make is you will find a comment from a 'Russ' on the site, who has also lived beyond his grade 4 GBM, he was diagnosed in 2011.
Stay strong, positive and concentrate on living in the here and now.
My husband was diagnosed in November last year and he had radiation therapy and TMZ.
his inflammation is not going down and they had to up his dex up to 12 mg and now he is on 4mg. But the inflammation persist and he is scheduled to have MVASI infusion to lower the inflammation. He does his exercise and walk daily. He eats no added sugar, lots of fresh vegetables and limited amount of meat. How was your first year's experience of GBM?
Has your husband not had his tumour removed and just had the standard treatment?
My first year's experience of my GBM was good, due to having already gone through the experience of my elder brother being diagnosed with his grade 4 GBM in 2009, he had his tumour removed and went through the standard treatment. Sadly he died in January 2010 four months before my illness and diagnosis. So I and my wife were in a far better position to deal with my diagnosis as we already knew exactly what was to come.
I became ill at work, and my wife insisted that we go straight to the nearest hospital A&E, which happened to be the same one my brother David had his tumour removed. So, I was quickly diagnosed with a possible BT, set for a scan and admitted that evening. My operation was the following Wednesday, so I benefited from fast diagnosis and treatment.
The following day, I followed my instincts and decided that prior to my operation, I needed to keep my brain working and that it was important that we ignore what had occurred the previous year regarding David's situation and outcome. I informed my wife, that we were not going down the 'what if' or considering 'what might be' scenario's. We will take each day and step, one at a time and cross any bridges that have to be crossed when we reach them.
This enabled us to concentrate on the 'here and now' and talk about what we wanted to do in the future, which is the stance we continue to follow. My wife started to do some research regarding possible treatments and found out about drinking ozonated water, which has extra oxygen in it (which kills cancer cells), so we decided to follow that up after I left hospital. I also have a dear friend who is an ex-chemist, who suggesting considering the use of 3% Food Grade Hydrogen Peroxide as an alternative treatment, which we researched and I started using after finishing the standard treatment and I have been using on a daily basis, since then.
Once I was out of hospital, we had previously agreed to have a holiday prior to my treatment and went on a barge cruise for a week with some relatives.
Whilst I was going through radiotherapy and chemotherapy, we would have mini breaks in Manchester, fitting in gig's when possible and doing some retail therapy. We concentrated on getting on living our lives in the best possible way as possible and have continued to do so.
I think one of the key things I have learnt from my 1st year is the importance of taking time out to rest and allow my body to recover from surgery and treatment. So, I do wonder if your husband is trying to do too much at the moment and not allowing his body to recover completely from his treatment.
My first instinct whilst in hospital and afterwards, was that I needed to maintain my previous level of fitness, which is only natural. But I didn't do it straight away, I waited 12 months before starting any daily exercise routine.
I have probably gone on too long, but hope my reply helps. If you have any follow up questions please do ask away.
I wish you both the very best for the future, stay strong, positive and laugh as much as possible.
My precious brother died five weeks ago of GBM, diagnosed in April 2023.
He underwent two vigil craniotomies and radiotherapy and chemotherapy twice (the first time with TMZ and the second with Lomustine).
He so much wanted to live. He was an athlete, and had been in excellent health and was as fit as a sportsman 20 years younger. He was a strong man both physically and mentally.
You told me about Food Grade Hydrogen Peroxide, ozonated water etc. I wish we had followed your advice as it might have made a difference.
He went down very quickly, from still being able to walk and talk to his death three weeks later.
He was our second brother to die of this devastating disease.
Thanks so much for sharing your story which was inspiring. My husband had his tumor removed (80%). and then SOC in Canada which is RT and TMZ. What other supplements are you taking besides the ozonated water and Hydrogen Peroxide.
Did you experience reading and writing? And how long did you stay on dexeamethason if you had it?
After my first operation in 2010, having checked my medical folder, I was on dexamethason for about 4 weeks. During my operation they got out as much of the tumour as possible, but always err on the side of caution to not cause further damage to the brain, hence why some is left behind. I don't know how much was taken out, but was happy with the result.
I was on 4mg, twice a day - 3 days at first; reduced to 2mg, twice a day - 4 days; then 2 mg morning for the remaining days.
My tumour was in the right temporal lobe.
I have only been on TMZ for one year during the phase 1 clinical trial of SATIVEX in 2015/16; taking it for 21 days in every 28, whilst taking SATIVEX every day.
I always took my TMZ with a pint of ozonated water - I use a SOTA water ozonator, which is made in Canada. I prefered to take my tablet before going to bed, so I could sleep through any potential side effects, which worked for me.
The other supplements I take are Higher Nature's Immune Plus tablets, which are designed to boost the immune system and their Complete Omega tablets, which are good for the brain, which I take on a daily basis.
Regarding reading I did suffer from a lack of concentration at first, but this has improved over time. I do use a dictionary when I am reading, as I have forgotten the meaning of certain words and sometimes have to re-read parts of a chapter to fully understand it. I just view this as part of re-educating myself and one of the adjustments to be made to how I live my life now. But, it hasn't stopped my enjoyment of reading, the last book I finished was Thomas Mann's the 'Magic Mountain'. I am now reading one of my late father's books 'The History Makers' which covers the last century.
Writing - again I use a dictionary a lot; I was never a good speller, so have always used one throughout my adult life. Whilst I can now spell correctly words I previously couldn't, I also find that I can't spell words I used to be able to. Once again, part of my self-improvement process.
I hope this proves useful.
Stay positive, and believe you can both get through this with a positive outcome.
Thank you for your reply. I am glad you have had a positive story. Unfortunately my Dad does not want surgery or treatment. The hospital were not even convinced they could operate due to how big the tumour is. They decided they would try and resect as much as they could but my Dad refused.
He seems to have resigned himself to the fact he is dying and does not feel he has anything left to do with his life. He is not listening to any of us with regards to eating healthily and he is not looking after his personal care or wanting to get out the house. We are trying to stay strong and positive ourselves, but it is difficult given my Dad’s views. One blessing is that he seems content with his decision and he is not distressed in any way at the moment.
Hi KerriC05. What a rotten illness this is. I can resonate with quite a bit of what you've said. My Dad, fit and healthy, developed an aggressive GBM. He did want treatment and had some (surgery & radiotherapy) but it was stopped cos he couldn't tolerate it / wasn't helping. A rapid decline too for my Dad, and that was even with him trying to move / walk as much as he could. He died about 5 months after diagnosis. Still hits hard writing that. Its so hard to know what to do for the best when you're in the thick of it. You'll be doing the very best you can. Some do have positive stories. But for many this is a tough road without physical recovery. My advice would be harness all the support and practical help you can - for your own family life as well as your Dad. I live 5 hours drive away from my Dad - although I have no children and my husband was a star - I basically moved in with Mum&Dad with short breaks back home. I was off work all the time and v fortunate to have been able to return to the same job. Its a hard thing to say, but if your Dad is accepting of death - can you use this as precious time to talk with and be with him, say anything which needs to be said, relive memories? Time for him to see old friends? In hindsight I'm glad I was able to have more time than usual with my dad. At the time it was very hard going, but there were precious moments within that time. We found that my Dad really did need 24 hrs support. He was only in bed for the last 3 weeks or so but way before then he wasn't safe alone, even when able still to walk outside he'd frequently collide with things / act weirdly which would have been unsafe if alone. Seizures too. Confusion, obsession with certain things. Huge short term memory loss. Irritability. And then periods of complete lucidity (often with friends)where I'd feel a fool for telling anyone how it was the rest of the time. I found that I needed to ask for help and ask again - GP, practice nurse, loads of questions to specialist nurse at hospital, bathroom aids from OT, physio help with how to help him navigate moving in and out of bed when all his spatial awareness was off. Info from RNIB as he lost loads of vision. We tried planning carers but couldn't figure out how it would work. Thankfully with lots of family and friends support we managed it. But I felt I did need to do lots of finding out and asking. Have you spoken to the brain tumour charity? I'm happy for you to private message me if you want to - there are so many details if what did / didnt help and I'm happy to share. Really really tough - but you will find a way of supporting your Dad as best you can, and I hope for you that within it you can also have some special time with him xxx
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