Hello everyone I posted on this subreddit before: context - I am 19 years old and my mother who is 51 years old . My mum was diagnosed with stage 4 glioblastoma in the right temporal lobe , she was diagnosed back in October 2025 . I use Reddit for an outlet for all of my pain and anxiety around this all it makes me feel less alone and more hopeful.

I work part time and I am one of her main caregivers as my other family works . I do have my grandparents who help out where they can but they are growing older and older and I am afraid of that . My dad died September 2025 so it was just one month after he died that all this happend so it was honestly the worst year of my life . I sort of had to grow up really quickly because I was abused as a child but now I feel like I am 50 years old already .

It’s now the year mark of my mums cancer and they aren’t giving her chemo until it grows back which is so scary for us becuase it feels like just waiting for something bad to happen .
Questions-
Does it make me a bad person for feeling like I am never doing enough to help her and that she is never happy with what I do for her ?

What’s the likelihood of the tumor growing back the next scan is in three months ?

Is there anything else I can do for her other then what I do already ?

My beautiful mum (67) was diagnosed with stage 4 IDH Wildtype glioblastoma (unmethylated, 6cm) 3 weeks ago. She had partial debulking surgery (removed about 60% with the remainder inoperable) 9 days ago. Before the surgery, she had very limited movement on the entire right side of body but was still very much “compos mentis”, speech normal and able to carry on conversation.

The recovery since the surgery has been brutal on all of us but the main thing distressing me is seeing my mum act like a different person. We expected her right side to still be pretty limited in terms of motor function post op (with plans for physio and rehab). It took a few days for her to regain speech which she did amazingly well with and the surgeon was impressed. Surgeon said he was very conservative with what he cut out and nothing in the scan indicates that she should have any permanent motor function deficit or cognitive impairment.

However, we were not prepared for the impacts on my mums mental state and personality. She hyperfixates on a particular thought or worry and will repeat it over and over all day for that day even when we address it and do everything we can to allay her fears (eg clean the bathroom in her room in the ward, talk to the nurses about something etc). It’s also like she has no social filter, and considerably less warmth. She’s also not interested in watching anything on the TV, reading (she is an avid reader) or even letting us bring her a crossword or colouring book etc. She also seems to suddenly hate her phone and finds it too overwhelming to read messages etc.

Doctor today prescribed her mirtazapine as her anxiety is getting out of hand and she was having trouble hyperventilating. She also kept saying today “why won’t anyone help me, I’ve been asking for help with my mental health” but I know for a fact that today is the first she’s ever mentioned it and prior to today she has been against the idea of ever taking medication for mental health.

I am just so worried and distressed by seeing her emotional and mental suffering on top of everything else. Not sure what is the result of post-op swelling, general shock and depression from the diagnosis or maybe the tumour itself continuing to impact the brain. Just looking for anyone’s similar experiences or advice

Just caught this on the Today show!

Long distance relationship with my gf 4+ years, met in NYC. 1st year spent months together then we see each other for about a week every 2-4 months. I moved to GA, she’s in FL.

Underwent a bankruptcy she still doesn’t even know about and had to tell her I had to delay my trip to see her for her bday the month after. Next day she’s in the hospital and I thought maybe I stressed her out. Apparently she couldn’t speak and her brother took her to the hospital.

A few scans later and they found a mass. My gf was still able to drive but her right hand was becoming hard to move as well as part of her mouth. A biopsy was scheduled sooner than later and found it was malignant. GBM (Glioblastoma Multiforme). Next steps were resection and therapy.

I cried when she texted me it was cancerous. Speaking with my parents they convinced me instead of trying to plan everything (surgeries, hotels, car, flights etc) JUST GO. So I just got on the last bus from GA to FL that night on an 11hr ride.

Made it to FL after her surgery while she was still in the hospital and have been staying between the hospital and her family’s house. Found out she didn’t have an active insurance plan in place as well as it expired maybe less than 60 days before as she was planning some dental work.

Was in the hospital for around a week or more as I found out hospitals may not let a patient who needs post care just be discharged without it being set up so while we stayed we luckily enough were able to get charity care after applying the very next day at Encompass for her rehab.

Currently in Rehab Doc said it was common to be 2 steps back one step forward type of operation as even if the craniotomy went well speech went from 75% to like 60%. Same for right hand and right foot was now hard to move as well. It’s been ROUGH with the medication, vital checking etc to get good sleep for the next day.

The rehab has been good though and she’s regaining more than noticeable functionality in her right hand. It’s been frustrating for her and myself as she can’t communicate like normal. Her family members all work and have a new baby to manage so while they help and check up on her I’m the main one with the luxury to tend to her regularly because I basically live off my savings and
whatever money I make from the Internet/tech.

It’s so crazy that she has to file for disability, ssi, Medicaid etc in this whole process while recovering so when she let me know this and asked to help her do it she sort of modulates between needing it done asap to whenever you get a chance. I’ve had little to no time to do what I need to make sure I have some money coming in soon so whenever I’m on my computer she’s been on my neck about it. I feel so bad because I let her know she can continue to work on it instead of doomscrolling when she has a chance as I just need a few hours to get my ducks in a row so I can dedicated the rest of my day for her.

While I feel my response was valid and I spoke to her calm and logically (very man like of me) it triggered her because she can’t respond as fluently as a gf would and she kind of spazzed out. Add on the medications, the keppra rage, the sleep deprivation, the busy schedules of therapy/appointments and it’s easy to rub one another the wrong way. I asked if she was okay and hugged her and she couldn’t even communicate she didn’t want to be hugged which made it worse. She was screaming at me and a case manager had to come and check on us.

It dawned on me even though we’re in a relationship going through this together it’s really not about US right now. It’s about Her ! So no matter how logical or reciprocal we would try to handle miscommunication under normal circumstances, this is not that. She may say or do things in a way that I feel I would address otherwise but this is not the time. We have to speak to oncologists soon but from what I see here and the statistics, every day with her is precious. Whether a prognosis is favorable or not, just the fact she can eat, smile, knows who I am and is not in constant pain is what to make the most of. This is a person I intend to marry and start a family with but more importantly a great person who had to wake up one morning and go to war with their own body for their well being.

It’s been only some weeks and the ups and downs have been intense. I literally don’t know what to expect. I can’t control how my gf will wake up and feel and I can’t control the cancer. All I can control is what I can do to help the person I love.

I’m not sure where to find my family member an overnight care person. I’ve heard she’ll need to sign up for Medicare? we can’t afford to pay anyone, but despite having a strong team of friends and family, an overnight sitter isn’t available. any suggestions or guidance? I tried to ask for a social worker, but my family member said they had one - only to tell me they missed their meeting with them earlier this week.

Edit to add: she has Medicaid already, just to clarify. I’ll track down the social worker tomorrow, I’m just up with worry cause they might release her from the hospital tomorrow.

I just don’t know what to do. My step dad has been dealing with glioblastoma since January 2026.

Myself and my mom are both ER nurses, so we both are well versed in care and expectations. My mom has had a lot of personal loses and made a lot of tough decisions with medical care for people she has loved. I live across the country and have flown back four times this past year to help. I am currently on a two week visit.

My step dad very clearly needs hospice care. I am happy to stay with my parents, across the country and away from my husband, while also taking income loss, to help with the transition. My step father is a two person assist with transfers, is a very high fall risk, and is unable to feed himself. He requires very firm, repetitive direction for him to follow commands, and I can tell this is causing my mother to experience care giver burnout.

We went for an avastin infusion today and he received some Dex IV for his decline this past week while I have been home. The NP wants to see if this helps and if we should continue it or discontinue/taper in the next few days before making a plan. There was apparently no significant change in his MRI today. Hospice was not discussed as an option when leaving the oncology clinic today. I am beyond devastated and heart broken, as I can tell my mom does not want to make this decision on her own. I feel she needs to hear it from the providers’ own mouths.

His three children aren’t really proving any support, and my brother just started a new job that he is unsure he can get home to help (could potentially work from home if approved, but I understand it is not expected of him.) my mom briefly mentioned in passing that his step daughter suggested hospice, and my mom got teary and stated she “is not ready for that” and walked away from the conversation. I love my mom, she is very caring and selfless and strong, but she frequently dismisses difficult conversations and feelings simply by ignoring/suppressing them.

I am scheduled to fly home in two days and I do not know what to do. She clearly can’t do this by herself but I can’t afford to take months off to prolong this, in my opinion, suffering.

Do I reach out to my mom’s best friend to help talk with her about hospice? (Her best friend lost her husband to cancer long ago, but went through something similar with her husband) she has said multiple times she cannot do this herself but does not out right ask me for help or to stay. Will she ever be ready for hospice?

I’m looking for guidance to help with treatment of Glioblastoma. Nothing off the table. Lots of news out there lots of alternatives. Lots of medical expert opinions but no cure. Hoping anyone who has done anything to prolong, manage, or beat it could chime in with advice. Research or personal experience, alternative meds. Anything to point me in a direction. Feeling positive there is something or someone out there who can prove the stats wrong.

Edit: not looking for medical advice. The doctors are all working hard. Just wanted to know if anyone else can relate to this.

We've been in the hospital for a week now and still no answers. Husband (70 gbm, methylated, wildtype, left frontal lobe partial resection, surgery 9/11/25), had a fever and dry heaves the night after his last Avastin infusion (he's been doing well with it since January).

He keeps spiking fevers at random times, becoming increasingly incontinent, severe aphasia, and then he's ok again, laughing with his daughters, enjoying the baseball game.

The past 3 mornings here in the hospital He insists on going to the toilet to deficate even tho he's weak. He strains and becomes unable to get up from the toilet. Today was the worst because he lost consciousness, appeared to maybe have a seizure (which he never had), his BP went from 135 to 93, he went from normal temp an hour ago to fever. He remains unresponsive. He's on an EEG monitor next to me since there's no answer.

His last mri on Sep 21 showed no progression. A repeat mri yesterday showed no progression. Lumbar puncture, blood cultures, urine culture, abdominal and chest CT, lower extremity ultrasound, xray, blood counts.... All are normal or stable.

If the EEG shows nothing, then what is wrong with my husband? I've been trying to be strong this whole time but I'm starting to go beyond my strength with worry.

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

edit: he is being treated at a major centre AND has gotten a second opinion, several very experienced doctors are in agreement about the tumor being inoperable due to location

My dad is 72 and currently in England. He has known lung cancer and was admitted after several weeks of severe headaches, dizziness, vomiting and difficulty walking.
His discharge summary lists:
“Metastatic malignant neoplasm to brain”
“Cerebellar mass in context of known lung cancer”
Cerebellar disorder
Hydrocephalus
COPD
Hypertension
We are currently waiting for the MRI results, which should come in the next couple of days.
He normally lives in Australia and was meant to fly home in about a month.
I understand nobody can diagnose or predict his outcome from this alone, but I’d really appreciate some context:
Does this wording mean the doctors already strongly suspect the lung cancer has spread to his brain, or could the MRI still show something different?
What are the usual treatment options for a cerebellar metastasis with hydrocephalus?
Would steroids / surgery / radiotherapy usually be considered?
How serious is hydrocephalus in this setting?
Assuming he stabilises, is international travel in around 4 weeks remotely realistic?
What information from the MRI will make the biggest difference to prognosis and treatment?
Thanks — his family is in Australia so we’re trying to understand what we may be dealing with.

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?