r/glioblastoma

My mom was diagnosed about 5-6 weeks ago. She’s on day 12 of radiation and has been doing chemo also. She’s is doing really good right now. But I saw a Facebook post of someone saying there husband (who has this disease) was good during treatment and then after it it went downhill fast. Is this the norm? I may have gotten to ahead of myself thinking because she’s doing so well during treatment

Hello,

My aunt has been diagnosed with a grade 4 glioblastoma. Part of the tumor was removed surgically, but unfortunately it has grown back. She has currently been undergoing chemotherapy and radiation therapy for the past three weeks. Life expectancy: 18 months.

We recently came across CeGaT and their personalized vaccine for glioblastoma, which is said to extend life expectancy. The treatment costs around €70,000. Fortunately, our family is in a relatively good financial position, so we would be able to afford it. But it‘s Not a no Brainer (financially).

Has anyone here had any experience with this treatment? Do you think it's a good idea?

We've found occasional mentions of it online, but we haven't been able to find any detailed, up-to-date patient reports. I would be incredibly grateful for any information or experiences you can share.

Olá pessoal, tudo bem com vocês? Vamos lá, em outubro de 2023 minha esposa descobriu um tumor na área esquerda do cerebro (próximo a área da fala) foi realizado uma cirurgia parcial em Dezembro 2023 onde foi removido parte do tumor na biopsia apresentou-se como Glioma de baixo grau 2 com IDH 1, houve radioterapia após a cirurgia, em março desse ano (2026) houve um crescimento onde novamente foi necessário uma nova cirurgia novamente parcial devido a área afetada novamente foi apresentado como Glioma de baixo grau 2 com IDH 1, antes de iniciar a quimio (temodal) eu descobrir o Voranigo pela internet e até em alguns grupos por aqui, onde minha esperança aumentou devido aos grandes relatos de sobrevida, conversei com minha oncologista e vimos com outra oncologista também sobre o uso do voranigo, devido ao tipo do tumor ficamos tranquilo para o uso e fomos para batalha com o plano de saude para fornecimento da medicação, a qual ganhamos e eles tem que me entregar até Quarta-feira dessa semana, só que ai que vem o problema.. minha esposa não estava se sentindo bem desde da ultima cirurgia o que parecia muito estranho para mim, a primeira cirurgia ela se recuperou rapido demais, pedi uma nova ressonancia e venho uma das noticias mais triste da minha vida, o tumor estava crescendo rapido onde da totais sinais de mudança para grau 3 ou 4, minha oncologista que usar o voranigo devido acreditar que o tumor permanence com o IDH positivo... pesquisando pela internet encontrei estudos que tem pessoas que usam o voranigo + temodal (Quimio) e estão tendo ótimo resultados resposta para os graus 3 e 4, alguem conhece alguem que usa? Estou conversando com nossa oncologista para tentarmos isso

For my upcoming radiation appointments, I have received exceptionally convoluted feedback from my hospital, doctor, and insurance about what can/could be covered. As you may or may not know, each of our radiation (and chemo) treatment plans can vary vastly based on numerous factors. I am now scheduled to start radiation in 2 days, but have been explicitly told that my insurance billing codes will not be made available to me for over a week.

I am asking the community here for help determining gioblastoma radiation and chemo treatment cost through medicare. I am 66 years old, and have already discovered that my medicare coverage will begin from the date (or perhaps 1st of the month) at which I apply for coverage. I already had the near entirety of my right frontal lobe (the location of the tumor) removed via emergency surgery. The tumor was found to be an IDH Wilde Type, stage 4, 5% methylated tumor. I have been prescribed 6 weeks of radiation, and 155mg of temozolomide nightly.

Can anyone provide knowledge, or even anecdotes of Medicare coverage for similar treatment plans? I would be extremely grateful for some form of guidance before making this multi hundred thousand dollar decision. I'm currently leaning heavily towards Medicare.

Hey Guys my dad is 66 who has been battling brain cancer for three years. His cancer has returned and has spread. It’s apparently spread from where the tumour first was so they can’t operate a third time. The only course of treatment is radiotherapy. Does anyone know what I should expect they have given him 6 months. But I’m not sure as his daughter what I should do to prepare myself or what is coming. At the moment he isn’t feeling any pain. His tumour was in the place of where speech is affected so his speech is affected but nothing else at the moment. Is there any chance the radiotherapy can work ? I feel a lot of anxiety as I don’t know how quickly he will deteriorate. If anyone has any advice or feedback of what I can expect that would be amazing thanks guys

So as the title says. Hes had scans done, 2 neurosurgeons have put down that they think it’s glioblastoma. He has the biopsy on Saturday. I’m trying to be strong for my mum - my dad is teaching me things now for when he’s not here as hes deteriorated rapidly. If it is glioblastoma, he may not have long left.

On top of that, my mum isnt really coping.

I also injured my foot 8 months ago, wore a medical boot as it was a bone stress injury but it still hasnt healed so I’m seeing a top foot specialist later today.

For context, im single and live with a flatmate. No partner.

People have text me but thats it. Not one person, who I consider a friend, has offered to meet up with me and spend time with me. I’m off work currently as well, I just feel so alone and so overwhelmed with all this grief. I can barely walk as it is. I feel stuck. And I’m trying to be optimistic. Not quite sure how to deal with this going forward but I guess… one step at a time. Does anyone have any good suggestions for distractions?

(Apologies for tldr ahead)

Hi everyone, many thanks to everyone in this sub and while I’m terribly sorry that so many of us are in the shitty boat of being a patient/caregiver/loved one of someone with GBM, it’s also been extremely helpful to read about people’s experiences. Open to but not necessarily seeking advice, I just wanted to vent and ramble a little bit.

My dad (65, 64 at time of dx) was diagnosed with GBM in January 2025 after he almost crashed his car. Right parietal lobe, wild type unmethylated and no good/useful genetic markers. “Total” resection, Stupp protocol and Optune (~18 hours a day).

His Dec 2025 MRI showed a lesion that was concerning for progression, but a FET-PET scan suggested it was just pseudoprogression / radiation necrosis, so we decided to wait it out. In Feb 2026 he had a re-resection on the recommendation of several specialists because the lesion had grown in size and he had begun showing signs of decline, but the biopsy suggested it was just radiation necrosis as they didn’t find tumor cells.

Unfortunately in April 2026, my dad had a fall, and in the hospital we discovered that he had full blown recurrent lesions in two different spots in his brain. Almost overnight, my dad had gone from walking and talking almost normally to not being able to stand on his own, severe facial droop on his left side, loss of left side motor functions, serious memory loss, etc. He is on a lomustine/Avastin combo now that’s helped significantly with his mobility / left sided weakness and facial droop. He still has some aphasia and memory loss, but not nearly as bad as before. His doctors also recommended that he go back on Optune but he adamantly refuses to, and I can’t fault him for that - it seems excruciating especially since he lives in a tropical climate.

Now we’re trying to figure out what to do next, and it’s been incredibly stressful and exhausting. We’ve been getting second opinions from many doctors around the world but all of them suggest something different. We’re really regretting the re-resection in February now, as we’ve been told he is now unable to have additional surgery (despite the tumors technically being in operable locations) given his age and him already having had a recent re-resection. The immunotherapy / CAR-T trials that he might otherwise be eligible for in his country also require that he not have had a re-resection. I’ve thought about flying him to the US (where I live) or other countries for treatment, but it seems extremely cost prohibitive when it’s not clear how much international treatments would actually help.

Sorry this got so long. I really needed to vent about the awfulness of the uncertainty surrounding this disease - uncertainty around what treatment options to pursue and what various symptoms mean. It’s hard to even feel happy that my dad is doing well on his current treatment because I know how sudden and extreme the next downturn can be. Thank you for reading and seriously fuck GBM!

hello everyone, i’ve just discovered this subreddit. my mom (61F) was just diagnosed with this awful disease. i’m not sure the specifics they only told us it was a tumour on the left side of her brain. she was admitted to the hospital on June 15th as my dad noticed her acting weird (stumbling, slurring words, seemed drunk lol) and thought we should have her checked out just in case. thank god he did. it’s so strange because she was completely fine the day before but i suppose that’s how things go.

she had surgery on June 23rd i believe to remove as much as they could and get the sample to pathology. she was still completely herself after the surgery with no complications. she meets with the oncologist tomorrow i believe and then treatment will start after that.

she’s at home now and is doing well. the only symptom we really notice is her memory is not all there and she repeats herself a lot. i feel absolutely stupid for being optimistic that maybe she might get through this and we’ll have more time. i can’t fathom i might only have another 12-15 months with her.

i am only 21 and i am really struggling with the impending doom of her death. i have always been a mama’s girl and she is truly the glue that holds my family together. shes the sweetest woman on this earth and im pissed off and confused and tired all at once that this has happened. i’m so upset she’s going to miss all of me and my older sisters life milestones. she’ll never see us get married, holidays will never be the same, she won’t see me turn 25,30,35,etc.

my dad and sister have been doing all the heavy lifting as i live and work 2 hours away and can only go up to help on weekends. i feel extremely guilty im not there every second and making the most of the time i have left with my mom. calling and texting only goes so far.

this is more of just a rant because reddit is cheaper than therapy but if anyone took the time to read this i want you to tell your mom you love her if she’s still around. my biggest regret is i should have called more, please don’t let that be yours.

Some weird things that have seemed to go hand in hand with my cancer:

No libido. None.

Extreme constant thirst. And I get sicker, when I'm dehydrated which can take like, 2 hours.

Restless legs from hell

No inner thermostat*

Just, out of curiosity. Thanks

Like most I have my good days and bad days, today is really bad. I’m realizing my mom won’t be at my future wedding or meet her grandchildren. I’m still years away from that. This stupid disease gives us a year. I can’t live without her. Does anyone have any longer term survivor stories or something

Lots of people on here and online say this extended life span, is this proven?

My moms purchased some cancer books, mostly like diets for cancer, stuff like that, but I was wondering if there’s any book anyone recommends that is eye opening in a good way. I’m pretty open to any for her, but like I said in a previous post she doesn’t like researching or talking about this disease so I thought maybe an uplifting book or something. Maybe it doesn’t even have to do with cancer. It can be religious, or not. I remember her reading a deep book about her and her mom’s relationship that she really liked and she said it was deep and stuff idk. My point is if anyone has any recs of something that’s not going to make feelings worse.

Thanks!

My dad (64) has a newly diagnosed IDH wild-type unmethylated glioblastoma (diagnosed March’26) . He had surgery, completed radiation with temozolomide, and has now started adjuvant TMZ. Like many families, we’re trying to look ahead and understand what options might be available if we ever need them.
I’ve spent weeks reading about CAR-T, dendritic cell vaccines, oncolytic viruses, and other trials, but the more I read, the harder it is to know what to focus on.
For anyone who’s been through this:
How did you decide which trial to pursue?
Which centers were the most helpful or gave you the most confidence?
Did you start contacting trial centers early, or wait until recurrence?
Is there anything you wish you’d known before starting the process?
We’re based in India but would travel if it meant access to a promising trial. I’d really appreciate hearing about your experiences or any advice you have. This diagnosis has been overwhelming, and I’m just trying to make the best decisions for my dad.

My mom went off her dex and it’s been an awful adjustment (2mg). It’s happened before, with the same results (goes off, has a 5+ minute grand mal seizure, goes back on). She’s having trouble communicating, but really doesn’t want to be on it anymore, and her doctors are overwhelmed so not giving her much attention / approved the request.

Today is day 5 of being off of it. Each day got worse. Today she can’t talk at all, can barely walk, and just had a bad seizure. But she refuses to relate these declines with not taking it anymore.

Curious if anyone else has had similar experiences with going off of it? I understand how hard it is to be on it, how terrible and scary all of this is for her. But idk what else to do. /:

My mom was diagnosed with glioblastoma about 5 weeks ago. She has been taking it good for someone finding out they have terminal cancer. She says she is leaving it in gods hands and that he has a plan no matter what even if something happens. This brings her peace which is what I want. But part of me gets scared because she never wants to talk about this. She tells me even me asking her how she’s feeling causes her anxiety. She doesn’t wanna talk about it at all. I try to send her survivor stories and articles for trials but she doesn’t want those either for some reason. She just doesn’t want to like acknowledge it. She’s not in denial, she knows it’s happening and she has hope but it’s just hard because I’m only 18 and I get worried and she was who I always talk to and I feel like i can’t ask questions or try to be helpful because it makes it worse for her.

My terminally ill sister is very close to the end of her journey and, as of yesterday, her husband used his power of attorney to ban me and one of my siblings from visiting her at the hospital. This happened after my sibling informed the doctor of our sister's wish that her "EX" not visit her in the hospital because she no longer trusted him.

My sister can no longer communicate, so my sibling shared this with the doctor and elaborated on the multiple ways my BIL has abused his power. She went so far as to threaten legal action if the hospital didn't honor my sister's wishes, noting she had proof of these in writing.

When the doctor called my BIL to relay this, he lost it and imposed the ban.

Though my sibling had dominated that conversation in the hospital, I said some things to support her. But as her delivery became increasingly fueled by anger and frustration, I regretted being a part of it and backed away to a nearby corner.

My sister will be moved to hospice this weekend, and my BIL said he may consider letting us visit via his structured schedule - "if he's able to cool down."

Many in our family are mad at the sibling for taking things this far, saying it's made an already horrible situation worse.

I cried myself to sleep last night and all morning. I had planned to be at the hospital every day, to hold my sister's hand, show her love, and provide comfort. Instead, I have been cruelly robbed of this irreplaceable time by a heartless, manipulative man.

Thanks for listening.

I know it’s rare in general even with it being methylated but are there cases of people without the gene lasting longer

Hello. I have sometimes answered your posts here, but this is the first time, when i post.

My mom 62F had confusion in sept 25. We took her to ER,they saw something in her right occipital (or temporal) lobe. It looked like low grade glioma and the confusion was an epileptic disorder. They started keppra and my mom went back to the normal. 1 month follow-up scan that something was still there and they desided to operate. Craniotomy was in november and initial pathology was glioma gr 2-3. Final results came in dec 25, glioblastoma.

Soc was in jan-feb this year and after that she has been on tmz. Follow-up scan in begining of 6/26 was clear.

After that she got confused and very tired again. She fell couple times. When i visited her last weekend, she was not herself. She just sat and did nothing. After that my stepfather noticed that she cant use fork and "eats " from empty plate with empty fork. We also noticed that she doesnt react anything that happens on her left side.

She is denial and didnt feel anything strange, as always. She said that she feels well and mocked us that we all the time look after her despite "she is healthy".

So we took her to er last tuesday. She got to the hospital and mri is showing"something new" near te operation area. Spots, that werent there 4 weeks ago. They say thar it Coud be radiation necrosis or that the tumor kicks in again. They started steroids and there is massive improvent in her health. She talks like before this disease, she walks better. But the left side neglect is real and raw.

Im worried about new lesions now. They didnt glow while contrast mri, but the original tumor didnt do that as well. And they are NOT in the original tumor cavity, they are ABOVE it.

They think that it is radiation necrosis but they send pictures to neuroradiologist and if he agrees, they treat my mom to decrease symptons of necrosis.

Im worried rahat there is a recurrence because original tunor looked same in contrast mri.

Has any of you faced something Similar? I would love to know whag are the next steps.

I hate this fucking cancer. I cant lost my mom, she means me everything.

Can you tell your ecperiences? What can i do? We live in Skandinavia so there is nothing more Useable left than normal treatment protocols. There is no optune, clinical trials että.

I hate this. Help me. Im already grieving that i will lost her to this shitty ting. Shitty SOMETHING.

thanks, i needed to vent.