r/glioblastoma

Hi everyone,

My dad (68) was diagnosed with glioblastoma (grade 4 glioma) in May 2026. The surgeons said it is inoperable and can only be contained with chemo and radiotherapy. Started chemo for a day then stopped cuz of low platelets. Just did radiotherapy for three weeks. Finally in July, they advised against chemo but my dad decided to go for it. The drug for glioblastoma is temozolomide which is palliative rather than curative.

The first cycle is almost finished but for the second cycle, the doctor is refusing to prescribe (I'm in Canada so the rules might be different), stating it will cause more harm than good at this point although my dad had no side effects from the first cycle. Obviously, we just want to do what's best for him but also respect dad's decision too. He's bedridden.

Any experiences like this? What would you recommend? Thank you in advance.

[supprimé]

Hello. I used to write here sometimes.

My mom is gone now. She left with peace and family around her. It was beautiful. Thank you all for going this through with us. I got much advice and support.

I share our story once again and then i hope i never have to come back to this sub. Fuck gbm, btw.

Im a doctor who works in palliative care and i have seen similar things all my Career long, i remember when some of you asked me about palluitive medications, i tried to help.

My mom got her dx in september 2025 after weird behaviour and vomiting. There was little chance in her right temporal lobe. It was 2 cm. Turned out that her weird acts were epileptic disorder and she got keppra and came back to normal. They tought that it looked like low grade glioma, so they operated in november 2025. In december we got the results and it was gbm. No symptoms. Soc ended in february 2026 and theystarted tmz. Scans were clear in 5/26 but after that she got confusion, issues with Phone and balance problems. Went to er in june, swelling, radiation necrosis regrowth, inoperable. Started steroids, avastin and lomustine. Didnt help.

She lost her ability to move by time after that. She could speak only few words. She was awake only hours. She got diapers and nurses started to do home visits. She was nearly bedridden but 2 weeks ago she went to shoppinhg with wheelchair when my brother was helpling. She used her card and paid croseries.

Last weekend our stepdad was at car event. In saturday she ate ice cream and enjoyed the sun. After that i made a meal and she couldnt swallow it anymore. She went to bed and never woke up. We started home hospice on sunday. She slept peacefully and had a pump for medications. It worked well.

Today she got Fevrer and her oxygen level dropped. We were around her and i said she may go now. She went. Her favorite Color was red so we dressed her up in red dress and found a red candle for her (from cristhmas). She looked so pretty.

After that they picked her up. Im at home with my brothers and my stepfather. Home is empty when mum is not here anymore. We still have each other.

And at night when i was brushing my teeth at the toilet with my brothers spouse i said that mum would be pround of us we made this so good and this all was so beautiful. Lights went off like 2 seconds and then came back. I think that it was mum saying hi and sending love.

Lost my mum, im still relieved that she didnt regain conciousness after swallow problems. It was 4 days in hospice. I had best mother and i told that her many times, also after she was dead. I love her forever.

Thank you here supporting me. Wish you luck and love.

My dad was diagnosed with GBM in September 2023, unmethylated wild type on his left temporal lobe (5cm when found).

The doctors gave us 9-12 months.

Today I am sat here in hospital almost three years later- the doctors are giving us 2-3 days at most. His breathing has already started changing.

I would not wish this disease on anyone.

He went into hospital 7th September 2023 because he had difficulty finding his words. He thought he was having a stroke. My siblings and I were all in London at the time and woke up to a text from my mum that my dad was taken into hospital at 3am and is undergoing exams for his symptoms.

Eventually they told us they found a tumour and while our world shattered we were hopeful it would be benign. We did our research on brain tumours- read about GBM and were like no way will it be that, 68 year old male, healthy, never smoked in his life, worked out over 5 times a week. Zero chance, cancer can’t happen on such healthy bodies.

Then came the surgery. Then the pathology. Glioblastoma. Our world shattered again.

The worst diagnosis we could ever imagine. At the moment we all mourned our dad, even though he was alive and communicating, just knowing the stats, seeing parts of our dad change as a part of his brain was removed, we knew life will never be the same again.

Fast forward three years (in two weeks) and we are where we are. I will write a post at some point about what we did, cause we attacked this with everything (KETO, supplements, peptide vaccine) and I want to share our full journey. Some things may have helped, some may have done absolutely nothing, and I don’t want to pretend that we can know which was which, from one person’s experience.

But this post is about something else. As I sit here in hospital and look at my dad suffering, all I can think about is why?

It baffles me that we can send man to the moon, we have artificial intelligence reaching almost above human intelligence and we don’t know what causes GBM and why. How does it happen to healthy people?
What is the common denominator here we are missing? I keep wondering whether, across thousands of patients, there are patterns we haven’t understood yet. Was there something about their immune systems? Their occupations? Environmental exposures? Previous illnesses? Genetics? Something completely unexpected?

So I wanted to start this thread to understand everyone’s journey and what was the lifestyle of their loved one, are there any common patterns that can help us understand this disease further, as science works best with data and observations.
This obviously isn’t a scientific study and it cannot tell us what causes GBM. But perhaps it can help us see what questions are worth asking.

I wish the worst on this disease and I hope we find a way to cure it like other types of cancer so that people’s world don’t shatter in the future when they hear the word GBM, and understand why it happened rather than hearing from the doctors “we don’t know”.

If you wish to share, you can copy paste the below and fill it in for your case (I have filled it out for my dad).

History

Gender: Male
Age at diagnosis: 68
Weight: Lean/normal
Smoker/Former smoker: No
Alcohol consumption: 3-5 glasses a week
Diet: Mediterranean
Exercise: 5-7 times a week
Sleep patterns: Snoring and sleep apnea (severe)
Family history of brain tumours: NA
Family history of cancer: NA
Long term health conditions: Hashimoto and eczema
Allergies: Bee sting, oral contrast (CT scans)
Covid vaccine: 4 astrazenica
Other serious illnesses/Viral infections: Hep B, Covid
Head trauma: No
Long term medicines: topical steroids for his eczema
Surgery: deviated septum
Blood group: need to find
Major life changes: death of his mother 2023 (5 month pre diagnosis)
Oral health: Dental amalgam (filling)
Gut health: likely some disbiosis
Chemical exposure: some chemical exposure through textile trading

Diagnosis

Tumour: Left temporal lobe, approximately 5 cm
IDH: Wild type
MGMT: Unmethylated

Hi everyone,

I’m struggling today, my dad is quite depressed and I am struggling to process everything as it’s all happened so quickly. Hes so frail now and I can’t really even hug him like I used to. I just feel so alone still. How did everyone else cope watching their parent deteriorate?

My wife (F41) was just diagnosed with a glioblastoma grade 4, pending a final pathology report looking for mutations. We are exploring all options because we have small kids. She had a full resection of the tumor, which was located in the frontal lobe. What is the most aggressive treatment option/regiment available, money not withstanding. Which cancer institutes or hospitals should we explore? Are there any clinical trials that may help? And how do we navigate this diagnosis with kids?

Hello All,

I used to have another reddit account I was active with but shut it down once things got more difficult with my father.

Anyway, my father was diagnosed with GBM at the end of August in 2025 after having left peripheral vision loss in both eyes. Initially, it was treated as a stroke but once the MRI was done, we were told it was a sizable tumor in the back right side of his brain. He had surgery on September 17th, it went well with 98% resection. We found out the tumor was MGMT methylated which gave us hope.

Shortly after the surgery though, we noticed some behavioral changes and he sadly fell into a steroid induced psychosis. That was absolute hell. He was put in the mental hospital for a month. I couldn't see him for 2 weeks out of that month due to a COVID outbreak. When he got out, it took him a couple more weeks to recover from the memories of what he had done in that psychotic state.

Chemo & radiation started in November or December if I recall correctly. It was intense. Due to the negative reaction to Dexamethasone, he had to tough out the post-radiation swelling. He suffered a major seizure in March which brought him to the hospital.

During this hospital visit, they ran an MRI and found he had a tumor in his Corpus Collosum and the original tumor site in the back right side of his brain was showing growth yet again. Our oncology team made the difficult call to change treatments to Avastin & Lomustine. I was terrified of these treatments after being told the side effects that could occur. My dad was a trooper though and agreed to proceed. After his first Avastin/Lomustine treatment, I noticed an extremely positive result. He was back to my normal dad. He had more energy, he was more sociable, he felt good. Palliative care however, was called in.

We continued the Avastin & Lomustine through till our next scheduled MRI in May. That MRI blew us out of the water as it showed the tumor in the Corpus Collosum and the original tumor site was no more! His swelling was non-existent too! We were so damn happy with this news! ... But, it was not all happy. Two small tumor sites had popped up in his frontal lobes.

Our oncology team decided to continue the Lomustine & Avastin to try to tackle these new sites. Come June, my father started to lose mobility in his right leg. Our oncology team made the decision to blast the tumors with 5 rounds of radiation. Following these 5 rounds, my dad sadly didn't improve. His mobility made a major turn for the worse come July. He was using a walker now and struggled even then.

Mid July, he had an MRI that showed the tumors in the frontal lobes had grown considerably. New satellite sites were popping around these frontal lobes as well. My father and I were panicking. Our team said they would be calling a meeting with a larger group of oncologists/specialists. A week later, we heard back: Won't be continuing Lomustine. Only Avastin treatments. No clinical trials available. Focus on quality of life now.

My father didn't make it far after this. He declined quite rapidly. He didn't make his Avastin treatments due to not being able to go down our apartment stairs. That destroyed me. Knowing that we were at the end. Knowing that he was losing his hope. August 3rd, he couldn't get out of bed. He slept the entire day essentially. I called a close friend to come visit because I didn't want to be alone. She stayed the night after talking to my dad because she felt he wasn't doing well. He fell out of bed 3 times that night. We called the paramedics all 3 times to do lift assists as he had no strength left at all.

He went into Hospice August 8th. He was happy to be there - getting 24/7 support. He fell into a deep sleep shortly after arriving. I went home. Returned August 9th and remained there till August 11th when he passed. August 10th, he had a surge of energy where he was his normal self. He met with all his friends & family. The last hoo-rah. It was beautiful...

A week has gone by and I'm fucking numb. SO numb. I feel too happy. I'm not happy though. It's like my mind won't let me feel the pain. The pain does come now and again though. I wake up sometimes at night to hear him calling for me or snoring. I ran to his room only to find his room empty. I miss him so fucking much. He was essentially my only parent as my mum abandoned me at 9 years old. He was my best friend. My rock. My greatest teacher. The center of my universe. I don't know why I can't feel the pain fully. I want to feel the pain. I need to release.

Fuck GBM. My dad had just turned 61 years old. I'm 31. I don't want to have a life without him. He wanted grandkids so badly and we often spoke of what my wife & children would be like. We dreamed a beautiful dream together for my future and now it's changed because he won't be in it.

Long story not really short: a relative had an unexpected cancer diagnosis. At the time of discovery, it had already spread. They had two major surgeries and were told the cancer was successfully removed, but to still do chemo. They chose not to do chemo, and a couple of months later, had a seizure. While in the hospital, they coded and were resuscitated, and it was discovered that the coding happened due to an extremely weak heart, working at essentially 10%. They had emergency surgery that went well, but after about a week and a half (they were sedated, intubated, extubated, woken up, had a biopsy, and moved to a regular room all in this span), the relative got fed up, ripped the tubes out, and refused treatment. They chose hospice rather than radiation for the confirmed GBM from the biopsy but are now refusing treatment there, so they are being sent home.

How to deal with this? We are respecting their wishes, but since hospice is not going to help, I just don't know how to best care for them. I will be helping their spouse, but neither of us knows how to do this. Their spouse is pretty old and has terrible hearing. I am so nervous as I want them to live as comfortably as possible, but with absolutely no medication, limited mobility (they can't do anything really - they have to be bathed, taken to the bathroom, etc.), and an extremely weak heart, I am absolutely freaking nervous.

People have tried to convince them to do surgery, to take meds at least, to accept treatment, but they are absolutely refusing. They just want to go home; they are tired; they are done. 😔 They were given 3 months without treatment and 12 with, but I assume the 3 months is with medication? And it does not take into consideration their weak heart 💔

I lost my mom this past March to stage 4 glioblastoma. She was 40 when she was diagnosed and told that she had 3 months to live and she was 43 when she passed away. My mom was my rock and I’m masking as fine, but I don’t know how to grieve. I have so much to say, so much that I miss from my mom to everything else that has changed now that she’s gone. I’m 25 and the oldest, but I don’t know how to help anyone, let alone myself navigate grief and coping with such a giant loss.

I feel like we are constantly in limbo. My mum has been on end of life care for about a month now. She was in hospital but we managed to get her home with a live in carer. As soon as she was home she seemed to deteriorate over night, she stopped being able to swallow her tablets, she was barely eating or drinking her communication was minimal, we were at a point of thinking it's only a matter of days before we lose her.

She is now in a nursing home as the carers couldn't offer her the support she requires as she was not sleeping at night which was stopping the carer from getting sleep.

We have had a lot of help from Phyllis tuckwell they have been amazing, the district nurses have set up syringe drivers for her anti seizure medication.

Since being in the nursing home, she has become more alert, not enough to think she will make a recovery but now I don't know what to expect.

Has anyone else been in a similar situation?

I don't want to lose my mum but she has no life, she is bed bound and so upset and confused.

I just want her suffering to stop.

Is it at all possible that a person could be misdiagnosed with glioblastoma?

July 5, 2022, My family member was diagnosed with Glio after having brain surgery to remove tumor.

Here we are 4 years later and they’re still here. There has been no regrowth, only a decline in memory and impulsive behaviors related to the portion of her brain that was operated on- otherwise normal as ever. Is it possible they were misdiagnosed? Everything we’ve read says they should be long gone. After bracing for the worst, we’re all just stunned (and grateful) this much time has passed as if it barely happened.

Hello! My dad is currently receiving palliative care at home, we don’t have hospice nurses in my country most of them don’t know what needs to be done. He’s on 12mg dexamethasone, 1500mg Kepra. And IV fluids and antibiotics, they told me he need it because they suspect he has an infection. Either pulmonary or UTI. He has a lot of secretions, I can’t tell if he’s having trouble breathing or it’s the normal rattling nurses talk about online.

I managed to get lorezapam and I’m still looking for morphine (it’s scarce in my country and very expensive) but I’m afraid I don’t know which doses to give him, the nurses and doctors here are no use they tell me he’s not grimacing so he’s fine….
If anyone could guide me I would be beyond appreciative.

Hi Reddit,

I’m (23F) in the UK writing this post straight after the discussion with my dad’s neurosurgeon and his formal diagnosis of a stage 4 GBM in his left temporoparietal region. I am his primary caregiver in this circumstance alongside my mum supporting me. I’ve been reading posts within this community to understand others’ experiences to better support my dad, and it’s been greatly helpful for myself - so thank you in advance for this read and solidarity.

My dad (59) had a sub-total resection on August 7th and we are currently waiting on his MGMT methylation status and IDH mutation results. His speech, language and comprehension have declined rapidly, with initial word retrieval symptoms first appearing 1st-2nd week of July.

Following resection, his speech and comprehension has deteriorated significantly. We are a bilingual household (English and Gujarati), and his English been affected more. He has also developed right-hand dexterity problems affecting using utensils/cutlery, doing fiddly things and when cooking.

My mum and dad run a small newsagent together with minimal staff. I’ve taken a leave of absence from my job to step in, manage the household/business admin, and support them full-time.

His priority is preserving his function, dignity and quality of life. He is very worried that chemoradiotherapy may worsen his symptoms, especially as his recovery from surgery has been slow.

We would really appreciate hearing from anyone with experience of:
·      Bilingual aphasia and whether one language recovered faster
·      Speech or hand function improving as post-operative swelling settled
·      Early speech therapy, OT/PT, home exercises or useful adaptive tools
·      Subtotal resection and whether molecular results changed treatment
·      Exploring clinical trials before radiotherapy
·      Supporting a loved one’s independence while taking over practical responsibilities or a family business
·      Someone who has had a GBM or brain tumour in a similar region

The current preliminary plan recommended by his team is 5–6 weeks of chemoradiotherapy, followed by 6 months of maintenance chemotherapy.

How did you balance the possibility of more time against preserving the person’s ability to live that time as they wanted?

Thank you for reading, any experiences or practical advice would mean a lot.

It’s just such a shame that I had to have this happen the brain bleed during surgery, which was basically a stroke so so frustrating. It frustrates me like nothing else.

So basically, I won’t be living up there again because I won’t be able to get up and down the stairs multiple times a day and I’m still taking a wheelchair to dinner and in the bathroom sometimes I’m just not ready and it hurts

I’m on the 11th month and it just hurts

I’m just so sad. I’ll be honest i’m crying.

I wish so bad this shit never happened

And I only have one hand to even help me do things my other hand can’t do anything really I’m pretty fucked and it makes me so damn sad

Hello everyone! I wanted to ask when will the first MRI scan will be done after radiation. Will it be after the first chemo cycle or before chemo cycle? After each MRI, how many weeks/months it will take for second MRI?

Hi, I would like to know if there are any treatments we haven't considered. My 62-year-old grandmother was diagnosed a month ago with a right parieto-occipital glioblastoma. The tumor is 6.5 cm, necrotic, and hemorrhagic. Surgery and biopsy are not recommended; only palliative radiotherapy remains. I would like to know your advice. Are there any experimental therapies, and if not, I would like to hear about your experiences and what the future holds? We live in Chile, and she is currently in the capital with my mother because the technology is more advanced there.

Also, if you have any advice on how to deal with her, I would appreciate it, because sometimes she has panic attacks and says "I don't want to die," and when that happens we don't know what to say to calm her down.

Hi, I’m new here. I’m from the Czech Republic (in Europe). My husband Petr—the kindest person in the world, always ready to help others, a great dad, and an athlete—fell ill with glioblastoma. It’s the wild-type, unmethylated variant, so it’s the worst possible scenario. It has been three months since his epileptic seizure and surgery; the tumor affected his left frontal lobe. He is doing well so far—he has completed six weeks of radiotherapy and a cycle of chemotherapy—though he sometimes has trouble speaking. Could you please advise me on what comes next, aside from the next chemo cycle? When should we start using Optune? Does anyone have any experience with this? The doctors aren't able to offer any advice, so I’m looking for information wherever I can find it.