Glioblastoma - the reality.

[ThisMustBeMyDream]

Following my DF's recent diagnosis of grade 4 glioblastoma, I'm after advice from those who have supported a family member through this.
My main questions are around what changes we will see, and how quickly those will happen (I know it varies, but information from others will help me make sense of it). And what the end will be like. I guess if anyone could share their story that would be the most useful for me right now. Warts and all.
My DF is fit and well ordinarily, and is late 60's. So this has come as a total shock. His is in his left temporal lobe. He will be starting radiotherapy soon. But what after that? Will we have a period of normality before he becomes ill?
I'm really afraid of the unknown. I think being prepared is the best way for me to cope through this. So I'm here to try and get as prepared as I can be on what to expect. I can't ask any of these questions at his appointments as him and his wife simply aren't ready to find any of that stuff out. But I need to. I need to know what the future could be like. This is all unknown territory for me, and I'm an only child. So I have to keep my shit together. Being prepared will help me be less blindsided going forward.

this is going to be tough

the path varies for everyone, at the start it depends on which areas of the brain are impinged on first as to which of his facilities will be changed first.

my advice is to say all you need to say soon. like in the next few weeks (it moves fast) then try and get to a point with yourself that your DF as he has been and you have known him is going to leave his body...and a broken shell will be left until his body fails due to brain control of his systems failing . if you can get yourself to understanding this, then it is easier to accept the changes in personality, abilities, etc
then make sure you know how he wants to be cared for as things deteriorate, does he want to be allowed to let 'nature take it's course' or does he want to fight to the end. Get POA for health and finances set up immediately and use the emergency pathway to fast track them Finally get a great health team around him talk to hospice, talk about pain medication and anti anxiety type medications you can keep at home (if he is at home) and how that plays out over the next couple of months

most of all, sending you a hug and wishing you strength

warning I will be honest like you asked
Husband age 38
stage 4 brain stem
He had had symptoms for some months but doctor linked it to something else.
He had seizures, was put into an induced coma for a few days. I was told he had a tumour when he was in the coma and the doctor told me he was unlikely to wake up.
He did wake up a few days after.
Had biopsy confirmed grade 4, was told he has 12-18 months.
Went down hill from there- mainly had water on the brain and must have had 4 operations to fit stems over the course of weeks. Best way I can describe water on the brain for him was like an Alzheimer’s patient, severe confusion.
He lost mobility but that was because it was on brain stem.
He lost all affection, from
being the most loving husband and dad he had to be told to hug his kids.
caught pneumonia which ultimately killed him, caused by the brain tumour.
He didn’t get time to have any treatment because he was always so poorly. But it would have only aimed to give him extra time. I spoke to the best surgeons in the uk and was told he wasn’t going to survive it.
time from first seizure to death-3 months .

I'm so, so sorry OP. My only experience of this is that a very dear friend of mine had this. When he was diagnosed they said he might live around 9 months but it was actually 9 weeks. He had a major operation then seemed weak but superficially ok but then it suddenly progressed very quickly. I think just make the most of every moment with him and your mum. I'm really sorry, lots of love to you.

I'm really sorry OP. My DM died from a glioblastoma last year. She was 69. Fairly fit and healthy before that, started feeling unwell in May and was gone by the end of August, so just about three months. It was incredibly quick and absolutely devastating.

She first complained of feeling wobbly, like she was walking on a trampoline. She finally went to the GP after a few days and they sent her straight to hospital. She was in for a week and then sent home, lots of appointments after that for scans and so on. She seemed to be on the mend, but I was going over every few days to make sure she was okay. At the start of June she called me saying she couldn't get out of bed, we phoned for an ambulance and she went back to hospital for a few weeks.

They did more scans and eventually said it was terminal, too late for treatment. It all happened very quickly after that, tbh. She lost the use of her legs, then one arm. She was moved to a care home and it was awful (not the home, that was lovely). She started to get incredibly paranoid about the staff, called me constantly, got upset very easily, stopped eating. There was more than one incident that was incredibly distressing for everyone, but it was all understandable of course. Then she would have days where she seemed quite "normal", like her old self. In a way, that was worse.

Eventually she decided she'd had enough, and asked to be put on the end of life drugs, which they agreed to. It took a day or so to kick in and then she was asleep most of the time. She passed away a few weeks later, and she was peaceful when she did. The death itself was easier to deal with than the preceeding weeks, in my experience. I was upset and still am, but it was also a massive relief to know she wasn't suffering anymore. It's different for everyone of course.

And I'm an only child too, so while I had the rest of our family and my friends around me, everything still fell to me in the end. It was very overwhelming and hard, and most of the time I just wanted my Mum.

So sorry again OP. Sending you lots of good thoughts.

My dad died of this over 20 years ago now but unfortunately I don’t think medicine has really advanced much in this particular area.

The first symptom was a seizure in the September and he died the following March. He had an operation to remove as much of the tumour as possible but we were all aware that this was only buying time. He also had radiotherapy. Both of these perhaps bought him a couple more months but in hindsight, very little extra ‘quality’ life as the disease progressed quickly.

It depends where the tumour is as to how it affects movement and personality but he saw changes in both very quickly which progressively worsened. As a previous poster said, make sure you say what you need to say and sort what you need to sort as soon as you can.

His final Christmas, he was semi-ok- able to partake in the festivities but after that he became pretty much bed bound and by the beginning of March, he went into a hospice.

They did a wonderful job of looking after him there for around three weeks. They kept him comfortable and three weeks later he peacefully died. I would say he was pretty much asleep for the whole of his last week.

I feel that I’ve been very matter of fact here but it is a horrendous disease and very cruel. We’re used to modern medicine working wonders but this really is a different beast to a lot of other cancers.

I wish you all the very best OP, you have a difficult road ahead.

I believe time is usually shorter the older the patient. We had a friend in their 40s with this. Had some surgery and treatment and had around 12 months reasonable health before it started moving very fast affecting movement, cognition and then they became increasingly sleepy. Really sorry op, it sucks.

How old is your dad and where is the tumour situated?
My brother was diagnosed in his late 40's. He was fit and healthy and they found the tumour after he fell off his bike and hit his head. They removed it that week and gave him 12 months. He had a great year signed off work on full pay and made his way through a long bucket list, climbing mountains, skiing, still cycling, nice holidays. My sister in law was exhausted. He sorted his finances, for all the sniffles in the house and garden sorted and the tumour slowly returned again. A year later, he had had such a good quality of life that they unusually agreed to remove the new tumour growth and he was discharged a day later,mobile and independent. His was frontal lobe and there were some personality changes but some were positive as he was more mellow and helpful. It was the final few months he really slowed down but up until 6 weeks before he died he was still walking to local Waitrose for coffee and cake and buying his paper.
He spent final last 3 weeks in local hospice and it was only last 3 to 4 days he was less conscious.
The only pain he experienced was from his catheter as he had got some scarring from it being yanked out when he tried to get out of bed and it was attached to the cot sides.
So, it can be very varied depending on fitness levels generally and position of tumour and what surgery they can offer.
Sorry you are going through this. We are 6 years on and one of his sons got married this year. Those celebrations without him are very painful.

I am so sorry about your dad OP
My neighbour was 60 and he collapsed while mowing the lawn just after Easter. They diagnosed him with epilepsy, but sadly later tests showed he had glioblastoma. He had a further seizure in June, and collapsed in July in terrible pain and was taken into hospital. He was brought home for EOL care and died just short of his 61 birthday in August. 12 weeks beginning to end.
I so hope they can keep your dad comfortable and dignified. It is a cruel disease.

Sending massive ❤️ and 💪 to you. Take a video of him now or a recording of his voice if he doesn’t mind. Xxxx

Oh wow, thank you so much for these super speedy replies. I wasn't sure I'd get many, if any, as I know it's relatively rare. It's obviously not as rare as I thought.
@paddybear His story resonates most with your DF's. He had a seizure (well, initially thought to be a stroke, but we know now it was a focal seizure) at home and was taken to hospital. He was confused and couldn't get words out properly - mixing words ie saying situationship instead of complicated, or blending some words. That settled quite quickly in to his stay, with only the odd mix up here or there or taking time to remember a word. But he remained quite hyper/manic throughout the stay, particularly around staff there. His short term memory wasn't quite right either. He was in hospital for 2 weeks as they were treating him for encephalitis as it was felt this was the most likely diagnosis after inital MRI and his symptoms (it was left temporal lobe - which is what encephalitis affects). It wasn't until he was supposed to finish treatment for that that they decided to do an mri contrast as they still couldn't definitively prove encephalitis with a lumbar puncture. And that was that.
We are 3 weeks on from that mri now. He's been back for biospy where they removed as much of the aggressive part as they could. He's now had his appt with results to confirm the diagnosis, and an initial appt with oncology and the plan for radiotherapy. She was positive in that she said he could have 18 months possibly as he was so fit and healthy prior (no underlying disease, and normal bmi, active playing football and golf regularly).
I guess I'm just trying to prepare myself for what is coming. Everyone has been very helpful. Unfortunately, I live 200 miles away. He only has his wife, and she has no children. So their support is not there. I've been off work since the cancer diagnosis as it was such a shock. But I'm going back next week. I need to talk to my manager about going forwards, perhaps taking time off to care for him when things progress, but before hospice care. God, I really don't know. This is so bloody difficult. I've got younger kids at home, so that in itself is a big challenge.
Trying to come to terms with losing a parent is bloody huge. Even if they aren't present in your day to day life, it's fucking hard. You know what triggered me to spiraling thoughts this week? Wondering if I'll ever get a birthday card from him again. Ridiculous. But that's how the mind works I guess!

I have the best recording of him. At my wedding, in July. Just 2.5 months before this happened. I'll forever be grateful that we did a last minute videographer. It wasn't in budget, but I really wanted one. A friend of my sons girlfriend managed to organise it for an incredibly cheap price for me. So I have all the footage of him walking me down the aisle and his speech. I have the original copy of his speech in my wedding memory box too.

I'm also incredibly grateful that we got married when we did. We've been together 8 years, and he finally got round to proposing whilst on holiday (with my dad!). We planned the wedding in less than a year.

I’m a palliative care nurse. I’ll echo most of what has been said by others. Glioblastomas affect people differently. Prognosis is often difficult to judge but in my experience death is often quicker than expected. It usually affects a person’s personality and cognition. Make sure his palliative team are in place. Advanced care planning is important but not everyone is ready to accept they need to have these conversations. If his preferred place of death is hospice, then feel free to visit the place with him beforehand, it can make it seem less scary. Make sure his GP or palliative care team prescribe anticipatory medications, especially if he wishes to die at home. They usually are an opioid for pain, a drug for anxiety/agitation/hallucination, and an anti-emetic. Depending on your Dad’s symptoms and needs, other drugs may be required for symptom management. And, again, advanced care planning is important as it makes the journey simpler for all. All the best.

I'm so sorry for all the heartache and pain shared in these posts💔
In 2016 my 42 yr old husband had a seizure in the August,diagnosed with GBM in the September and died in the November.

In answer to your original question , I think irrespective of differences of the individual journeys which are inevitable, sadly the reality is that life will be unprecedentedly unpredictable.

My husband didn't want to spend his last days, weeks, months anywhere other than at home, he stopped medication and refused chemotherapy.

Id promised to respect his wishes, he accepted 8 weeks of dying at home rather than 12 weeks of dying in and out of hospital, futile treatment and false hope....

9 years later I'm still traumatized, ill never be the same and often wonder if agreeing to his end of life home palliative care ,with a 4 year old child and also my 86 year old dad with dementia was a rash one
All I do know and all the advice I think is mine to give to you...Is that you will sadly carry pain of loss and trauma from the journey with GBM... you can't avoid the journey but you can survive it by listening to your heart and your instincts.

I recognised my husband's determination in the end of life timelines for GBM, helped me to steady myself like preparing myself to be blindsided....

Grey 🩶 Matter's Everyday More Awareness needed for GBM

XX

My Dad was diagnosed after mixing up words/ forgetting how to read. He had operation to remove some of tumour, then chemo and radiation. The operation was in March. We were told 12 to 18 months. Rescanned in July and we were told 4-6 weeks. He didn’t get aggressive ( we were warned he might), from mid June on he slept most of the time. In the last few weeks he had a number of small seizures. He was peaceful and seemed mostly unaware of how sick he was. He did have a number of more severe seizures the night before he died. He slipped away peacefully the following afternoon. Wishing you all the strength in the world, there will be plenty hard and challenging times but plenty pockets of joy, that still make me smile.

As others have said each journey with GBM is unique. My husband was diagnosed in March 2015, age 47, after crippling headaches and sudden high blood pressure. It was brutal - 2 resections, 3 rounds of combined chemo & radiotherapy and chemo, enormous doses of steroids and medications.

In his case speech, balance, movement, thought processing were affected. He also had hallucinations and seizures. He survived for 16 months and the last 3 months saw the most dramatic decline with near constant seizures. When he died it was due to a pulmonary embolism.
GBM has left its mark as it came from seemingly nowhere and it was like being caught in a living nightmare. Now 9 years later I have come to terms with it and remember him how he was before GBM. We miss him.
Be kind to yourself during this journey.

My dear BIL was diagnosed at age 75. Prognosis was 6 months, up to a year if he took treatment which would involve 120 mile trip every week plus drastic side effects. He declined. Following 2 major seizures within the first month he lost pretty much all processing function, speech and mobility. He died three months after diagnosis. In retrospect, I’m very glad that we had that short period of peacefulness between diagnosis and the first big seizure so that we could say all that we needed to.
but it’s a crappy disease.

My husband has gbm and we are 5 months in, please do feel free to pm me. Sorry you are dealing with this too.

I'm so sorry OP. Even as a grown up child, it's still everyone's worst nightmare isn't it, losing a beloved parent. I think you are being very brave and smart trying to arm yourself with as much knowledge as you can. Big hugs xx

My dad crashed his car with my stepmum in it, rolled it into a field - they both walked away, we thought how lucky they had been. Then dad fell at home a month later, and was taken to hospital where his grade 4 glioblastoma was found. Within 2 months he was in hospital in a coma, moved to a "holding facility" or community nursing care (was in France) where he died after 3 months in and out of a coma.

It was truly horrendous. But a fair part of that was the foreign country, travel and 2 kids, one starting reception...

I am so sorry, OP. Just lost a friend to this awful disease last week. He had just over a year after diagnosis and at the end he was no longer able to move or speak and he was mostly sleeping, until he peacefully slipped away. The first round of treatment caused him to be partially paralysed on one side but he was still sound of mind; subsequent seizures and decline then slowly robbed him of his faculties. Things that will help practically: get POA in place, find out his wishes about treatment and what to do if he is not able to communicate verbally, get access to pins as he may suddenly forget these. It's a sad and thorny path, and I hope you can make the most of the time you have.

Op has he had surgery or are they going straight to radiotherapy? Have they had a genetic analysis of the tumour?

We were lucky, hearing other people’s stories. He lost his words first, and the scans for that identified the tumour. After surgery he got a little bit of language back, but not much.

We didn’t get anything in place- PoA etc- because DM had a bad case of denial. She was also unable to care for him well because of her own issues. That side of things was really tough.

He stayed physically well for a long time. Lasted almost the 18 months. Did all the treatments offered.

Medical staff were amazing, carers less so- limited in the ways they could help. They aren’t allowed to intervene if the patient falls, so that was a worry.

No real personality change- he was a lovely man and remained so, but very childlike towards the end. Do you get on well with his wife?

It was a gruelling 18 months. Look around for what support you can put in place for you. 💐

My dad had a glioblastoma in his temporal lobe (right, i think) when he was 68, died 11 months later aged 69.

It was about 4.5cm when diagnosed. Unique to my dad, he had had a head CT, for investigation of something totally unrelated, 12 months before his diagnosis, and there was NOTHING on that scan. So in under a year that tumour had started growing and reached 4.5cm in diameter.

He had surgery, the doctor wouldn't confirm a diagnosis (or even make a sensible/ obvious evaluation) until the surgery with biopsy, when from the previous scan info it was clear it was as aggressive as they come. The surgery left him paralysed down one side. In the two or three weeks prior to the surgery he was on steroids and he just went back to normal (in hindsight he'd had weird symptoms for months), and we did some nice things together as a family. After surgery he was disabled, depressed and his presenting symptoms worse. I wish he'd never had surgery and just had longer being 'him' with less time overall.

He was in hospital about 10 weeks after surgery, then after discharged started radiotherapy with low dose chemo tablets alongside. He breezed through this with just a bit of tiredness, totally unphased.

After radiotherapy he went on to the higher dose 4 weekly chemo (tablets at home), he was so sick! Week 1 he was taking chemo and was nauseous and a bit sick, week 2 he couldn't get out of bed with the nauseous, vomiting and fatigue, week 3 he was just exhausted and run down from the previous 2 weeks, week 4 he was okay. My DM and i talked behind his back, that this was insane and no life for someone who was destined to die relatively soon anyway. I spoke to my dad, he said he was worried that if he didn't continue the chemo that people would judge him for giving up and letting them down if he stopped the chemo, i said the only people's opinions who mattered were his, DM, me and my DB and that me and DM felt he should stop, and I'd talk to my DB but was sure he'd agree. Dad didn't have any more chemo. (This was in February i think).

In late May he started having seizures, in late June he went into hospice for respite care as neither of them were coping at home, he was brewing a chest infection at the time so was started on oral amoxicillin. That didn't work. Throughout his illness i had talk to dad about his right to refuse treatment including antibiotics (DM, DB and me were all LPoA for health but dad never lost capacity). The antibiotics didn't work so he was offered stronger alternative antibiotic, and admission to hospital for IV antibiotics. He declined and passed away 2 or 3 days later at the hospice. He was still only taking paracetamol for pain relief at this time.

My advice is, that this is a rapidly fatal condition whatever treatment is thrown at it, so don't let your parents be pressured into any treatment that your dad doesn't actually want just for the sake of protocol, culture and quantity of life over quality. Focus on booking some cool activities as a family rather than putting all the energy into treatment that will ultimately be futule We went to Longleat, he did a disability friendly holiday with DB and family, we got him a disability friendly flight in a 2 seater plane for his birthday, i got married and found a hotel which was fully adapted and provided carers for the weekend so he could attend.

Sorry you are going through this too x

I agree with Periperi2025 about treatment options. My BiL was recently diagnosed with an acute form of cancer and I said the same to him. Once you’ve got a diagnosis you feel like you’re on a runaway train with information and advice coming at you from every direction. Your dad is in control and he needs to be making decisions that suit him. Healthcare is set up to save and prolong life. Even oncologists and palliative specialists sometimes struggle with accepting that starting or continuing treatment isn’t necessarily the right decision for that particular person.

The language around cancer adds extra pressure. Fighting, battle, etc. There are no winners or losers in cancer, or any terminal condition for that matter. There is absolutely no shame in saying that I want to stop treatment, I want to decline treatment. We support every patient whether they want quality or quantity. What is coming is likely to be brutal. IMO, and I repeat this is just IMO, treatments can sometimes be more brutal and can sometimes result in quantity with poor quality. No-one should feel guilty because they’ve let people down by not fighting hard enough. Acknowledging reality is as equally “brave” as going full speed ahead into treatments. I guess what I’m trying to say is that your dad, and anyone else in a similar situation should feel empowered to slow the train down or to stop it.

Best wishes.

My advice is, that this is a rapidly fatal condition whatever treatment is thrown at it, so don't let your parents be pressured into any treatment that your dad doesn't actually want just for the sake of protocol, culture and quantity of life over quality. I very much agree with this too. My husband is (was?) a very fit man in his mid-40s with teenage kids. Having treatment makes a lot of sense in his situation, given that he's statistically more likely to be one of the people who does well with treatment and gains more time as a result. On balance it's probably been the best thing for him so far. But even with the factors in his favour, he's said sometimes that he wishes he hadn't. The treatment for this disease can be brutal and has impacted him far more than he expected at each stage, in terms of function and time in hospital. One of the problems is that you are asked to make these decisions really quickly and often at a stage where you haven't really absorbed the prognosis (or don't want to know it - my husband didn't for months). That means that it's hard to evaluate what you are 'buying' with the treatment and how to weigh that up against the risks. If they are able to face and process it, my advice would be to ask for real honesty from the NO in terms of what they think the risks are and what the most likely outcomes are. The risk is that you spend your remaining time in rounds of medical appointments, dealing with brutal treatment and only get a few months longer than you would have done anyway. I also agree with CaptainSensiblesRedBeret that the language of fighting is really unhelpful, especially with this disease.