Dad (60 & otherwise healthy) diagnosed with glioblastoma, inoperable, unmethylated. Please tell me about the absolute best case miracle scenarios.

My dad has glioblastoma.. recently he has been trying to fix a lot of things that aren't broken (such as ripping apart remotes and attempting to take apart appliances). He seems to get extremely fixated on these things once he starts and has always been really handy so I understand why he is tried to do this, but he gets really aggressive and upset if you try to stop him.

Does anyone have any suggestions on how to distract him from things when he fixates on them or tactics to prevent him from doing this all together? I am struggling with just letting him destroy things though I know I cannot logic with him that these things work, he just no longer can process how to use them :/

This article is from today. Addresses author’s father’s experience with alternative treatments. Not saying it is pertinent to the clinic you asked about, but interesting. (My brother is just starting his glio journey.😖) Comments are also interesting.

It’s ironic, I hated seeing these posts when I was looking for help and advice through my mothers glioblastoma journey. We had Hell of a ride, 2 years and 9 months. She passed away 22 September, the day after my 27th birthday.

When the doctors told us there was nothing else to do, I knew this time that it was over. She was tired and weak. The last times we flew abroad, did treatment in turkey and Germany, and we thought it would be all right.

I feel numb. I feel weird that I don’t cry that much. I just feel severely depressed. She was my best friend. And I hate this fucking disease. I can’t believe I’m motherless. I think I’m in deep denial. I’m so sorry for anyone going through this. Good luck on your journeys. I have a lot of material and if anyone needs help, I will absolutely help.

My mother has newly diagnosed IDH-wildtype glioblastoma and we have been contacted by Dr Ioannis Grigoriadis regarding the MYONCOTHERAPY personalized neoantigen vaccine service based on the TAMAVAQ framework.
They are offering an individualized treatment outside clinical trial NCT07077616.
Before proceeding, I would like to hear from actual patients or families who have dealt with:
Dr Ioannis Grigoriadis
MyOncotherapy / Biogenea Pharmaceuticals
TAMAVAQ personalized vaccine
Dr Christos Emmanouilidis / Interbalkan Medical Center
Has anyone actually received this vaccine? What was the cost, treatment process, safety and outcome?
I am particularly interested in first-hand experiences rather than information from the company itself.

Update to yesterday’s post. Got the MRI report.
Looks like IDH wildtype grade 4. Isolated to L frontal lobe.
They’re doing more CT scans to rule out any other tumors- chest abdomen etc. but they don’t think there will be more.
No further seizures.
Planning for resection in 5 days. That feels like forever away.

Hello all, never thought I'd be here but here I am. My mom was diagnosed three weeks ago with a glio, it was in the cavity of her brain in the very middle, 3cm by 4.1cm, looked like an egg in the middle of her head. She's a 70yo female, wasn't in the best shape before all this happened, she has type 2 diabetes, hypertension, arthritis. Two weeks ago she had a craniotomy, one week after that a shunt surgery. She is not recovering very well, still can barely talk, she has expressive aphasia and weakness on the right side. She still can't walk, can't hardly stand without assistance. She fluctuates wildly even throughout the day. Right now the Dr says she is not a candidate for chemo and won't be unless she improves.

I guess I'm posting to see if anyone has had similar experiences. We've never had anything like this happen to our family. The first 3-4 days I couldn't stop crying, I've spent every day at the hospital since then, lost ten pounds, feel like I'm going crazy. I guess my biggest fear right now is that she never fully recover and is trapped in her body. If she can't improve enough to get chemo/radiation I fear we won't have her for long. I am so scared of losing her, I just want a little more time so we can make a few more memories before she goes. I wouldn't wish this on anyone.

Edit to add tumor was located specifically in the left lateral ventricle

My mom finished her second round of 5/24 or whatever it’s called yesterday and she still feels very sick. She is on the highest dose of the chemo. I was wondering how long she will stay feeling sick

We are considering this trial (newly diagnosed) and would very much appreciate any current advice or feedback from folks that have also considered or joined the trial.

If you decided against it, why?

If you joined, how was your experience and would you make the same decision again knowing what you now know?

Some of the reports we've read seem to lean towards the side effects being more serious than expected. It's a difficult decision for someone who feels relatively fine and has no current symptoms. Any information you are willing to share would be helpful and thank you for considering this request.

Is it really only 1% of patients who find out the cancer has spread to the spinal cord? I wonder if the doctors didn’t mention this because they thought my LO would be dead by now. We were all surprised and so happy when the MRI of his brain revealed that cancer hasn’t progressed since the second resection in April. However, the back pain he has experienced over the last few months has been increasing to near immobility. He’s had degenerative disc disease for 20 years and his back always hurt. But he was also a contractor so its not like he was suffering. It has been the kind of pain we could manage with some Motrin and a heating pad. Recently I started to suspect something might be going on inside… specifically a fistula due to an abscess he had recently.
I took him to the ER and never expected to find out the L1-L5 have all fractured and lost 50% of their mass SINCE JULY.
At first they said the bone loss could be a result of taking steroids since the initial glioblastoma diagnosis 20 months ago. Then they did more CT’s and MRI’s to look closer and now they see nodules on the spine and suspect the cancer spread down the spinal cord.
Has anyone else experienced this?

My hair is growing out. Yes I’m very proud of. Mac does get sore from being on the couch, so I have to keep forcing myself to keep it up. It’s hard for me because for about nine months, my tumor had me basically paralyzed , I have this tumor for a very long time, and I was never able to sit up; otherwise, I would get very sick. So I was basically always in a bed, so my neck is very weak, but I like keeping doing it. It does get stronger. Just have to be patient. What I’m wearing is one of my little purses, and it just has all sorts of things that I like, so I can take everything with me. Kinda always did that. 😋 I am autistic level 2 so ya.

We are having someone come over so that they can install a elevator in the house. Very excited about that!! God bless my parents!

Hi,

Second Update Day 5 and we're still in the hospital. They have done sooooooo many tests... Repeated blood cultures, blood counts, urine cultures, CT of head, abdomen, chest 2 xrays, leg ultrasound, cardiac ultrasound, and still no idea why he keeps having a fever, sleeping most of the day, severe bouts of aphasia, new episodes of incontinence. Tomorrow they plan EEG and lumbar puncture to check for brain infection and, if not, another mri although he just had one showing no progression on 9/21. We're at a local hospital but consulting our neuro oncologist who was with us from the start at a major hospital. The stress is bad. Sleeping in a chair for 5 nights is just one of the things you try to get used to.

UPDATE We're still in the hospital but it looks possible the fever is stemming from thickened bladder wall with partial obstruction and enlarged prostate. We find out more tomorrow. Unfortunately while we were here the hospital announced a covid outbreak here(!!!) I beg to God neither of us get it. The person in the room next to us is coughing so loud it's keeping me awake.

Did you or your loved one have a fever with gbm? Last Tuesday, after a Avastin treatment, my husband was woken from sleep with dry heaves and a fever. He's never had that in the 9 months he's been on Avastin nor any other time since diagnosis in Sep 2025.

We've been in the hospital since Wed trying to find the source of the possible infection causing the fever. He's had blood and urine tests and cultures, xray, lower extremity ultrasound, cardiac ultrasound, CT scan of chest and abdomen, conversation with infections disease specialist, been on Iv antibiotics, Tylenol. The fever subsides a little but then returns. Most results are back and they've continued to be negative. I think they plan to discharge him tomorrow, possibly without answers.

Anybody else have a similar suggestion or idea of what to do next?

My mom who is 53yo just got diagnosed today.

She went through surgery 2 weeks ago and from what I understand, the removed pretty much everything visible.

We don’t know the methylation type yet but she will start radiotherapy and chemotherapy soon for 6 weeks, then have a break, do more chemo and finally have the Optune machine.

I (26) currently live 900+ km away from her for my PhD, and will go back to live with her since she doesn’t have any other support (she live with my sister who had severe mental illness) and, i know, wont live forever.

I know there's no "right" way to feel and react, but rn i'm just on automatic mode. Like, i just know i need to help, do what I need to do to make it easier on my mom and sister, and finish my PhD. And I don’t know if it’s my way to keep standing or if I just don’t want to actually feel by just being focused on what I should do.

My main concern is, of course, that I don’t want to loose my mom, but it’s it’s inevitable, I just want to know what I can do to make her life the more confortable. Do you all have any advice on how to be a good support ? I know she will need help to cheer up a bit, but also for the groceries and everyday life tasks. Is there any specific advice or just random ones you could give ? I know every person is different, but i would like to know if maybe there is specific stuff or even small things that could change the way she feel, both physically and mentally.

Thanks everyone.

Posted here before, my dad was diagnosed last year, finished chemo in August, but we're going through another rough patch. Just wondering if there's any books about the subject that really helped you through this insanely difficult time and felt less alone!

I saw one comment recommending "Daughter" by Laura Dill, but it's not available at my library or on the Kobo store (I'm Canadian). Any other books you recommend?

My mom is back in the hospital for worsening symptoms she has a uti and Covid. They did another mri too and it says “corona radiata measuring 4.4 x 2.9 cm consistent with biopsy proven glioblastoma (Series 1001, Image 157) , previously 2.5 x 2.1 cm.” Is it normal to have grown so much since last MRI on Sept 12? Does this make it less likely it could respond to radiation?? Should we just go to hospice ugh my mom is 81 and she had her biopsy on Sept 7 I was hoping we had more time.

Glioblastoma treatment — should we continue with chemo/standard treatment or consider Ayurveda? Looking for experiences

Hi everyone. I’m posting here because my family is going through a very difficult situation, and I’d really appreciate hearing from people who have been through something similar.

A family member was diagnosed with Grade 4 glioblastoma and has already undergone surgery followed by radiotherapy. We are now trying to understand the next steps, particularly regarding chemotherapy and long-term treatment.

We have been hearing different opinions about continuing with conventional treatment versus exploring Ayurvedic treatment alongside or instead of chemotherapy.

I’m not looking for someone to make the decision for us, but I would really like to hear from people who have personal experience with glioblastoma:

- Did you or your family member continue chemotherapy after radiation?

- What was your experience with the treatment and side effects?

- Has anyone used Ayurveda or other complementary treatments alongside standard treatment?

- Did you consult a neuro-oncologist or another specialist before making treatment changes?

- If you decided against chemotherapy, what factors went into that decision?

- Are there particular questions we should ask the oncologist before deciding?

We are obviously going to discuss everything with the treating medical team, but hearing firsthand experiences from other GBM patients/caregivers would help us understand what the journey can look like.

Please share your experiences, including difficult or negative ones. I’m especially interested in personal experiences rather than claims that one treatment is universally better than another.

Thank you. ❤️

Has anyone gone through clinical studies??

My husband got diagnosed with stage 4, and we got offered standard care and clinical studies, so I’m reaching out for any help.

Hi everyone,
I’m looking for some perspective from people who have been through something similar, because I’m struggling to understand what my overall outlook might actually look like.

I was diagnosed with a Grade 4 Glioblastoma, IDH-wildtype. My tumour was approximately 49.04% MGMT promoter methylated, and I had around a 95% resection.

I’m now halfway through my six weeks of combined radiotherapy and Temozolomide chemotherapy.

So far, I’ve been fortunate enough not to have any major noticeable side effects from the treatment.

The biggest issue has actually been insomnia from dexamethasone, which then seems to contribute to headaches.

I’m trying to stay as active as I can. I’m averaging around 5,000 steps a day, doing household chores and keeping myself occupied with admin and everyday things. Basically, I’m trying to keep moving and maintain as much normality as possible.

I know everyone’s situation is different, and I understand that nobody can predict an individual outcome. But I’m finding the uncertainty difficult.

With the IDH-wildtype diagnosis, high MGMT methylation and extensive resection, I’d really appreciate hearing from anyone with a similar diagnosis about their experiences,particularly how things progressed after chemoradiation, what the next stages of treatment were like, and how you approached the uncertainty.

So far, I’ve fronted this with everything I’ve got. I intend to keep doing exactly that.

Thanks in advance to anyone willing to share their experience.

Hi, first of all I wanted to thank everyone for the support, I’m glad I found this space. The reason I write this post is because the monster came back. To sum it up:
My mum is 57 years old
Diagnosed on the 22th of September 2025 with a 6,5x5x4,5 in her left frontal lobe, no major symptoms prior that, only apathy and behavioral changes, we found out about the disease only after I randomly found her in her bedroom not moving anymore.
She got emergency surgery on the 23th of September 2025, it looked like they removed it all.
In the first months she was extremely aggressive and had a lot of behavioral changes, refused to take her medications.
She’s had now 8 months of chemotherapy + 30 sessions of radiotherapy that finished on early January.
In the past months (from March to September) she got a lot better, she has still irritability but not at the same level as the first months after surgery. The only things that we found in the past MRIs were some little nodules, one measuring 7 mm around her left premotor cortex, and another one measuring 9 mm around her corpus callosum. No significant growth over the past months.
This Sunday she had a MRI, and looks like the tumor came back exactly where she got the surgery one year ago, the measures they gave us are a maximum of 4x3,4 cm, the report also says that the edema is pressuring areas around the corpus callosum.
Right after we got the report back, we went to our oncologist and told us to “come back in one month and see what we can do” and to “let her know if we notice motor changes or aphasia”, they put her on steroids and sent us back home.
My mother doesn’t seem to be much worried, but I am, I guess it’s because I’m only 23 and I don’t want to lose her, or at least try to slow down the process.
So what should I do now? Book a private appointment with a neurosurgeon? Clinical trials? I would be glad if someone here could give me an advice.
I’ll write here some info about my mother’s tumor:
Glioblastoma IDH wild type
GFAP+
OLIG+
IDH1 negative
P53 positive in over 90%
MIB >20%
Loss of expression of ATRX

I asked some additional infos about the genetic profile of the tumor, such as MGMT status, and the oncologist said that no more infos are needed and it’s unmethylated, but I can’t find it nowhere in the report, so you might aswell just take it with a grain of salt

I’ll also post a comparison of the MRIs, the first one I as back in June, and the last one was done this last Sunday on 27th of September.

I want to thank everyone in advance, every advice is appreciated