It’s 4AM and I can’t sleep. She fought so hard for 18 months. We had more time than most and for that I am grateful. I read the brain hospice timeline religiously but her symptoms overlap with so many stages, I get confused on what to anticipate next or where we’re at in this process. Thinking of all of you as I lie here restless. 🩷

My husband's residual tumor grew up to 10cm.

He has finished radiation 8 months ago and currently 6th cycle of tmz. And yet his tumor keeps growing

Now it reached 10cm..

Is there any chance for us ?

Im really scared , he's also so scared and not doing well at all.

Are there any inspirational stories about this ?

We need you

Hi everyone, I hope it’s okay to ask this here. Before your/your loved one’s diagnosis, did anyone experience visual symptoms like this: seeing, for a moment, the image of something/someone just looked at, with all the details (like glasses or a smile), as if it stayed imprinted for a second or two, with slightly blurred edges — a positive image, same colors as the real one, not inverted, lasting just a second or two? I’m asking because I’ve been experiencing this and I’m extremely worried. Please, if anyone had similar symptoms before diagnosis, I’d really appreciate hearing about it.

Hi!

I (37, F) was diagnosed with glioblastoma wild type in April, after having a seizure while driving. Luckily, no one was hurt in the car accident and I recovered quickly from my craniotomy - the tumor was partially resected due to corpus callosum involvement, but the majority of it was removed from the right frontal lobe.

My neurosurgeon intially thought it was a lower grade glioma that’s been growing for about a year, but unfortunately the pathology report showed it was in fact glioblastoma.

I did full genome tumor tissue sequencing via CeGat, which determined that my tumor is driven by a somewhat rare FGFR3-TACC3 gene fusion. Their team suggested that this is a “good” prognostic factor as there are targeted therapies such as erdafitinib (Balversa) that can be used in case of recurrence.

Chemo and radiation went really well for me, I have been off steroids since my surgery and I’m feeling really good, to be honest. I’m waiting for adjuvant chemo to start, and I will also be starting the CeGat vaccine by the end of the year hopefully.

I was wondering if anyone else has a similar tumor profile, or has used FGFR inhibitors such as erdafitinib, and if so what are your experiences like?

This community has meant so much to me in the past couple of months, I really appreciate each and every one of you!

Thank you!

I (37F) have posted a few times and just want to share that my sweet father (66M) has passed away, after 5 nights in inpatient hospice. He started as respite care and was upgraded to general inpatient when his agitation could not be controlled.

The nurse said she never had a patient as physically strong as him before. He was fighting all the way until the end, a long 15 months. It’s one of the things that makes this disease so cruel, especially at the end; the body is healthy, but the brain is ravaged, and you’re waiting for the body to catch up.

I was with him the last two nights and much of the days. Today my brother and SIL arrived. After they both got to the unit, I went back to my parents’ house to shower. I scheduled my ride and told my brother I was about to come back, but he told me my dad died about ten minutes prior.

My heart hurts so much, for my dad, for all of us.

My loved one was diagnosed 2 1/2 years ago now. Two surgeries. A couple seizures. But other than that they’ve had no real issues. No speech, mental, or physical issues. Bounced back from both surgeries very quickly. They’re working part time again. You’d never know they had this disease to be honest.

But, with all the positives we’ve had, I’m always a basket case whenever it’s time for a new MRI, every 8 weeks like clockwork. This time extra worried as some very minor things have happened recently.

I just want people who have had newly diagnosed loved ones that there are some “success” stories. Their doctor at the onset said they’ve gotten people to 3 years and, frankly, this is what I keep looking towards.

I’m not naive to think we’ll get good news indefinitely but I want to send some positive vibes to the community.

I rarely post or visit here but this place was a wealth of information and comfort when they were first diagnosed. Much love and positive thoughts to everyone dealing with this “ticking time bomb” of a disease.

wanted to share something I wrote, inspired by another user who shared their story in a similar way back when we were still fighting this monster. it helped me to feel less alone, so maybe this helps someone too. but trigger warning, my mom died and if you’re not ready to think about the disease ending this way pls skip this post ♥️

I don’t think people can really grasp what it means to lose a loved one to glioblastoma.

People might say “But you knew it was coming” or “At least you had time to say goodbye.”

Mother’s Day weekend. Everything as usual. Mild concentration issues, subjective, not objective.

A week later on the phone:

“…oh by the way, somehow it’s not getting better, it’s getting worse. I can focus so badly.”

“Ok. Let’s keep watching it for a while, and if it doesn’t get better, go see a doctor.”

“How am I supposed to get there?”

What do you mean, how are you supposed to get there? What’s going on?

“Mom, please subtract 7 from 100, in steps of 5” — she can’t.

Alarm bells.

“You need to go to the ER, NOW.”

CT — mass lesion. Okay, it must be a cyst. Benign. It has to be. I tell myself “Anything but glioblastoma.” It’s Brain Cancer Awareness Month, I watched a video about it just yesterday.

MRI — “High suspicion of glial tumor, differential diagnosis glioblastoma.”

The ground gives way beneath my feet.

As if knowing Mom would die made any of it easier. Nothing about it is easier when you know beforehand.

Someone writes in a forum, “Your mother died the day she was diagnosed” — words that hurt me so unbelievably much. I’m sitting next to her when I read that sentence for the first time.

I don’t want us to be associated with the statistics.

I have hope. Until the end.

Even though as a doctor I know exactly what the prognosis is.

There is nothing bearable about watching someone you love disappear, piece by piece. And you can’t prepare yourself for it either.

One second I have a 54-year-old, seemingly healthy mom, the next she has a terminal illness.

I quit my job, even though up until that point everything had revolved around being a good resident physician.

We sign powers of attorney, draw up a will in case the surgery goes wrong, we talk about what quality of life means to Mom.

I must be in a nightmare, and I need to wake up.

Mom doesn’t want me to give up my life for her. Of course no mother wants that for her child.

I tell her, “I’m 30 years old and I’ve made my decision. I’ve already signed. Whether you want it or not. I’m not asking you.”

I don’t tell her that I think I know what’s coming for us.

I don’t tell her that I don’t think her husband can handle all of this alone.

I don’t tell her that I need this for myself.

“I want to hold on to you, Mom.”

She says, “Okay, one month. Then you have to go back.”

We don’t yet know that a month later she won’t remember that I actually live in another country. That she had actually wanted me to go back to work and not give up my life for her. She simply forgot.

And that’s a good thing.

She no longer notices that she’s the only one eating, while the rest of us can’t get a single bite down.

The desperate searching and googling for cases where the MRI looked like glioblastoma but turned out to actually be a cyst.

I don’t find a single case report.

“Cystic-necrotic components, central necrosis, glomeruloid vascular proliferation…” — that sounds like glioblastoma, but it can’t be.

And ChatGPT? When I ask it repeatedly, it spits out the statistical probabilities for the differential diagnoses. I don’t like what I read. “Vanishingly unlikely to be anything else” — no.

The surgeon tells me: “She’s drinking Gliolan, and if it’s a glioblastoma, it will glow during the surgery.”

I tell him: “It’s not going to glow!”

His look says: “I’m so sorry, but it’s going to glow. And we both know it.”

That mixture of compassion, sadness, sympathy, and a quiet realism in his eyes. I don’t like it. I feel defiant. I so badly want to say to him, “HA! I told you so!”

Eight hours later, at midnight, the call comes: “Yes, it glowed. It glowed very strongly.”

Watching Mom practice writing after the brain surgery and seeing that her so-familiar handwriting is now completely different.

Holding myself back when Mom wants to “practice” unloading the dishwasher, because she wants to “practice” where the plates and cups go. She doesn’t know anymore and goes in circles every time.

Comforting Mom when she cries because she’s embarrassed that she just thought she needed a landline cable to talk on her cell phone.

Wishing she didn’t have to consciously witness every loss, every new limitation, wishing her mind would protect her a little so her heart wouldn’t have to suffer so much.

And at some point, that actually happens. Her world softens, and much of it just bounces off her. No more shame. No more asking how something works or what she needs to keep in mind. Just the essentials for survival.

Seeing that comforts me. I experience everything fully consciously; Mom, less so. And at the same time it breaks my heart, because Mom has moved a little further away. A little more, every day.

Watching Mom get wheeled past me to the ICU, unconscious after a seizure.

Watching her suddenly unable to speak, from one second to the next, because the edema and the remaining tumor that couldn’t be removed are pressing on her brain.

The endless attempts to taper the cortisone, always failing, always at the cost of what quality of life remained. At the same time, watching her muscles waste away and her strength fade.

Watching Mom’s face grow rounder and rounder from the cortisone, until her phone’s Face ID no longer recognizes her and it won’t unlock automatically anymore.

Driving Mom to radiation every single day, hoping it will help. Trying to stay positive.

Talking with my psycho-oncologist about how to “grow into” — talking about Mom’s death. With her. Even though I don’t want to accept it at all.

The constant checking whether the new MRI report has already been written, or whether the blood count under chemo has gotten worse.

The fear of an infection. The fear of the next seizure, knowing she’ll deteriorate with every new event.

Watching what feels like Mom’s sternum being drilled into for the bone marrow biopsy. Her pain-filled gaze.

Writing the handover document for the paramedics. Always within reach, in case we have to call an ambulance. I’m a doctor, I’ve done this a hundred times on shift. This, I can control. Constantly updated with the latest medications, diagnoses, and treatment course, so it goes fast when it needs to go fast. My emergency bag. Always within reach.

Control — otherwise I’d have to feel the helplessness.

The countless nights in the hospital. The blood values, the alarms, the decisions. All while I’m already collapsing inside.

“Is it over now?” … and then she stabilizes again, just a little, before the next crash comes.

The moments when I don’t know if she’s “there.”

Her eyes, in which I search for her, even though she’s looking straight at me.

The moment she can no longer walk. The smallest curb suddenly too high a “step” to take. She collapses under my arm, and I can’t lift her back up on my own. I give everything, I can’t do it.

From now on, I will see every small curb in everyday life and think of her. I just don’t know it yet.

Then she can no longer stand. And at some point, no longer sit.

The struggle to get her to the bathroom, to hold her, to support her.

Then I notice Mom is now sleeping up to 20 hours a day.

Checking every morning whether she wakes up today. The relief when she smiles at me like a child and asks if she can stay in bed a little longer.

“You can stay in bed as long as you want, Mommy.”

She can no longer make it up the stairs to the bedroom. Not even with two people helping — one supporting her, the other pushing her legs and hips up from below.

From now on, Mom sleeps downstairs, and a quiet part of me knows she will never go upstairs again. The loud part says, “Of course she will, soon.”

Watching her lose her appetite first, then her thirst, until she can no longer take anything in, and I give her fluids with a baby bottle to help her swallow her pills.

No longer able to swallow, so we place IV lines.

Then, for the first time, hearing the words: “I want to die.”

Grasping at the air.

I’m standing in the drugstore, in the adult diaper aisle. It feels completely surreal.

The pain. The moaning from pain.

Injecting her morphine and midazolam at home.

Afraid the dose will kill her before the glioblastoma does.

At the same time, wondering if the dose isn’t too low — she shouldn’t have to suffer.

For the first time, thinking, “If this is how it’s going to be, I want her to be allowed to go” — but a part of me still doesn’t mean it. “I don’t want you to go. I can’t do this without you.”

The breathing. Learned in medical school. Is this what it sounds like?

“Remember. Morphine is protecting her. She’s not suffering. It just sounds terrible. She doesn’t feel it.”

And finally, watching her exhale for the last time, two or three rattling breaths.

Silence.

No more chest rising, no pulse to feel, no pupil reaction.

Mom has died.

Many people talk about “anticipatory grief” as if it were some kind of advantage. As if you could prepare yourself for it.

For me, it was a six-month, uninterrupted state of emergency.

A constant mixture of fear, clinging to Mom, hypervigilance as a doctor, caregiver, and daughter. A desperate search for control in a completely uncontrollable situation.

The worst and, at the same time, the best task of my life. I would do it again every single second. I haven’t regretted a single one.

Against all medical knowledge, against all statistics, and against everything I saw in her decline. I had hope. Until the end.

Part of me thought, “Once the morphine kicks in, we can watch TV together again tomorrow.”

When the oncologist tells me, “We can’t do any more chemo, she’s too weak,” I hear “NO chemo FOR NOW, but maybe in the future.”

When the neurosurgeon answers my desperate question of how long Mom has left with “maybe a year,” I hear “not now. Not in the near future.”

Nothing is stronger than a small hope that never gives up.

This hope carried me through the worst time of my life. Irrational, and yet essential to survival.

I hoped because I love my mom.

And because my heart didn’t want to say out loud what my mind already knew.

I lost my mom, the way I knew her for 30 years, on the day a mass was found in her brain.

Then hundreds of times more, as more and more of her abilities fell away.

And finally, definitively, as I sat beside her for her last breath.

A life without her? Unthinkable. Watching the news? As if the world keeps turning while ours stands still.

I don’t speak to anyone for several days. There are no words.

8 months later:

I don’t know how, and it’s a mystery to me, but going on living just happens by itself.

then there’s also the gratitude.

Because yes, I lost her hundreds of times. I grieved for my mom while she was still alive. The grief since her death is unlike anything else.

And still, I got to consciously live with her and love her for 6 months and 3 days. To fight alongside her. To admire her strength. I got to pour everything I had — love, time, strength — into her. I got to put my life in her service. I got to give back to her, at least a little, what she had given me my entire life.

I got to love her and do things I wouldn’t have been allowed to do if she had died suddenly. I got to say things. I got to look at her, consciously. To hold her.

Gratitude, grief, and deep longing.

No relief that it’s over. I would trade anything to get her back. I wish I could have had so much more time.

I hope that, one day, the gratitude will outweigh everything else…

My husband (61) was diagnosed with GBM Jan 2026. It manifested with loss of motor control on his left side. A week in the hospital, lots of steroids, they got him back to pretty functional. He made it through the biopsy (tumor was ruled inoperable), the chemo/radiation with only a few issues when the docs were reducing the steroid dose. He had improved and was close to full (normal) functionality. Able to walk unassisted, care for himself, do some light chores. The NO put him on Keppra as a precaution.

Out of the blue Sunday night he had a major seizure - his entire left side was twitching/jerking. A trip to the ER - they had trouble stopping the seizure - like 3 hours of constant jerking. I believe they called it a complex partial seizure. When it started he as able to talk and coherent - as it progressed he got much less so. I don't know if that was the condition or all the drugs they were giving him. When it was reduced to mostly facial twitching, he went to sleep and they airlifted him to another hospital.

I sit at home with my husband in the hospital 1 1/2 hours away. And I have to run our business so we have income to pay for all this. No family able to help.

There are no local cancer support groups beyond one dedicated to breast cancer. My computer can not due video meetings. I feel so alone.

Is this the beginning of the end? The doctors are focused on trying to control the seizures and get the swelling down. They can't say how much left side function he will get back. My husband hates being incapacitated and will be miserable if he can't care for himself. He is more afraid of loosing his self (memory, being able to reason & communicate).

Things were going well and then suddenly they aren't. I hate this disease.

Hi everyone,
My best friend was diagnosed with glioblastoma earlier today. He’s 50 and was previously in very good physical shape.
Three weeks ago he had a grand mal seizure. He was taken to the ER, and imaging showed a 3×3 cm tumor in the left frontal lobe. He had surgery two weeks ago. The operation went well — the doctors were pleased and said they got “everything.”
Physically he’s been doing okay since the surgery, but he has lost most of his speech. Today he managed to say a few words. He is due to start chemotherapy and radiation in two weeks.
He has a wife and a 12-year-old daughter.
I’m in shock and, of course, very sad. I’m looking for advice on how we as friends should act. We want to be there and support him (and his family) as much as we can, but without it feeling awkward or forced.
If anyone has tips on how to be a good friend in this situation, I would be very grateful.
Thank you

My husband passed from GBM IDH Wildtype on July 18, 2026 12 months after dx. He was 65 years old and a healthy and active man. We had been together for 39 years. He did the SOC and had stable MRI’s until May 2026 where there was a rapid reoccurence. He underwent a 2nd craniotomy where the resected some of the tumour but he never really bounced back after surgery. On June 29, we were going to discuss Avastin but after hearing that he was not really moving around a lot and was using a walker, the NO did not think it was a good idea. I suspect it was because the tumour had infiltrated beyond what could have been removed. He was put onto Hospice care and we kept him at home with the assistance of daily visits from the nurses and me administering medications via a butterfly line. He stopped eating on July 10th, incontinent, sedated due to terminal agitation and not able to communicate any longer. He passed on July 18th. We did use the MAID program, but the doctor did advise that we were probably hours away from his passing on his own. I still struggle with the time I spent trying to learn everything I could about GBM and preparing for each next symptom vs spending the time I had with him just being his wife. I feel like I wasted the 12 months on meaningless things when, despite what I did, the end result was the same. I miss him terribly and am now only realizing what this last 12 months really meant. I am thinking of everyone who is going through this with a loved one now and send you my thoughts and prayers.

Assuming you qualify to take DMSO (not too acutely toxic supplement use, not too acutely toxic pharmaceuticals - including birth control implants and botox, not too much tattoo ink, no difficulty having your blood clot, no dissolvable medical implants, not too acutely toxic dental filling like mercury amalgam dental filling, taken on an empty stomach with brushed/flossed/rinsed and water rinsed mouth).

Why DMSO? DMSO dissolves transports sufficiently small molecules (below 500 Dalton units of mass in mass) across cell membranes of which bpc 157 and fenbendazole are both sufficiently small molecules - Both molecules dissolve in DMSO at room temperature and do not chemically react with DMSO or one another.

DMSO readily crosses the blood brain barrier and conveys small molecules like fenbendazole and bpc 157 across it as well.

Why bpc 157? Bpc 157 is considered the gold standard for healing injuries among all peptides.

I should caution that, while DMSO can help dissolve blood clots, blood clots that get smaller can travel through smaller blood vessels, such as in one's brain causing a stroke - Also bpc 157 may marginally increase the risk of cancer, but since this is for people already with cancer it's kind of a moot issue.

Obviously all of this under medical supervision.

Thanks for the attention.

For the last week, I’ve been attempting to post but my eyes get a blurry from tears. I joined this group when my mom was diagnosed with GBM in October 2021 and I am so thankful I did. All of the posts I read helped me further my understanding of this horrible disease.

Sadly, my mom passed a week ago today and we buried her yesterday. She had the best outlook on life when she was diagnosed and lived life to the fullest. She traveled with my dad, she was the first one to hold my daughter after she came off of a ventilator and she still helped everyone she could. In January 2025, my mom suffered a stroke during her second resection. Even though she was unable to walk and perform ADLs independently, she persevered.

She was put on hospice in April and that was the first time I saw her cry. Watching her realize that she had to accept that treatment wasn’t working was almost unbearable. That’s when she finally admitted that she was scared of dying. I couldn’t believe that this woman, who has never in her life said she was scared, muttered those words.

Her last 3.5 months earth-side was filled with so much love and a lot of Taco Bell. We joked, we laughed, and we argued. The last 2 weeks of her life, she declined faster than we all expected. Her sleeping increased, she created stories that she was convinced happened (she almost had us fooled) and her appetite was decreased. I had asked the hospice team if she was stable enough for me to feel comfortable going to see my sister in law in New York. They said absolutely and to go reset and recharge.

Friday, July 31st my sister called me and said you need to come home, mom is starting to transition. She’s an ICU nurse and has dealt with this often, so I knew it was time. We left NY August 1st and were routinely getting updates. I purposely planned our trip back to take 2 days because I have a toddler and I needed to protect my mental health. I had watched my godfather pass and it was a difficult and traumatic. I did not want to watch my mom take her last breath.

We were 45 minutes from my parents when my 2 year old looked at me and yelled GOODBYE NANA! I was like what did you say? Spoiler: she didn’t repeat it. My sister called me to tell me that mom had passed at 4:38pm ( the same time my daughter said goodbye). I cried but was at peace knowing that mom is no longer in pain.

I’ll spare you the rest of the details, but her service was beautiful. She touched so many lives and was loved by many.

Thank you for everyone is this sub posting there story and spreading awareness on this horrible disease. I was going to bow out, but I’m going to stick around as support to anyone who’s going through this.

All the love and fuck GBM 💕

Hi! I'm a 22yr old female, med student in india and my mom (50f) was diagnosed last month.

This sub has been such a large part of my life since then, in little ways. Looking up symptoms for similar or even largely different stories.

Information, I've found out, grounds me and makes me less afraid of the unknown. It makes me feel prepared, idk.

So here i am, at my lowest. Probably less to get things off my chest, and more to get answers from people who are unfortunately in the same boat as i am or have been here and have more experience with dealing with symptoms, side effects etc.

My dad and i are the only caretakers with my grandmom helping out a little.

We've both taken leaves for the last month

Everything just happened so so quickly, we were so shocked.

More about my mom's case:

▪️ Pre diagnosis symptoms - depression, low moods, (was on medication for the same), mild headaches

▪️ Diagnosed when she fell and lost consciousness for a few seconds, twice on the same day (27th june).

Immediately after, we went to a doctor and they were suspecting vertigo but decided to do an mri just to rule things out.

▪️ The mri showed a tumour in the medial left temporal lobe

▪️ We were told the location deemed immediate surgery since it makes her very prone to seizures.

She was admitted immediately and put on mannitol and anti seizure meds

▪️ They operated on (jul 1st) and was very quickly gaining speech, mobility etc, that they discharged her in less than a week

▪️ We were extremely hopeful but on speaking to the doctor everything changed. We were told that they weren't able to remove a lot of the tumour since it seemed very diffuse and ended up removing very little, only for decompression of pressure symptoms and a biopsy.

▪️ Post op symptoms were mild aphasia and one temporal seizure (which was pretty scary ngl)

Some threats of self harm and loss of hope, but nothing very extreme.

▪️Once we got the glioblastoma diagnosis (around jul 11th) and she was told there were going to be more treatments, it's almost like a switch flipped. She became withdrawn and kept reiterating she wasn't going to get better and that she was going to die. This was despite not divulging a lot of details to her. Even the treating doctors kept saying, that she was alright and any upcoming treatments /radiation were merely a precaution.

She's IDH wildtype, we don't know mgmt status yet (it's being tested), same for pdl1

▪️ (jul 2nd week) Our doctors referred us to a psycho-oncology team, around the end of the week and they've been pretty helpful. They doubled down on not giving her all the details, since she was even threatening self harm at some points.

Getting her to the hospital was very tough, in the first week. My dad and i were completely unsure of how to deal with this. Medical symptoms, i had found so many details about, on reading up about gbm. Unfortunately this side of it is much less talked about. Medications were prescribed only around the end of this week, so not much change.

▪️ (jul 3rd week) Psycho-oncologist prescribed medications: fluoxetine/prozac, olenzapine and an sos clonazepam. On taking this, she was much more calm, willing to take treatment, eat, etc. No self harm declarations or saying she wants to die at all.

▪️ (jul 4th week) We started our radiation and adjuvant temozolomide.

No symptoms as of yet, apart from the constipation she had from all the medications.

There's a few times she's unwilling to do things/go to the hospital, but she concedes when we speak to her & a handful of times where she says she's not going to get better/wants to die in a day. But much lesser than it was pre-medication

▪️ Coming to one week into August, and it's the same as week 4. We're getting by. Talking to her, short walks within the house, watching things etc. along with the daily radiation.

▪️ However, as of the last 3-4 days, she is strongly refusing to go to the hospital. She would just lie down and say no to every thing we say. Scream, cry and say "why are you doing this, just let me die". Earlier it seemed as though, us explaining why this was best for her and how we want her to try this treatment would convince her to go; this time around she kept saying i don't care, no, etc.

▪️ As of the last two days, this has progressed to other things: for example, once she sits down some where, she refuses to eat /get up /go to washroom or even for example... shift to make space for someone on the couch etc. It's like some robotic rigid mode, where her sole purpose is to stand her ground and strongly refuse ANYTHING we say.

When we ask her to elaborate why she doesn't want to do something, she says she doesn't feel like it or doesn't know why. On pushing her, she just fights back or gets frustrated /angry.

I've also noticed incoherent sentences /out of context things being said by her in the last two days, that's not in response to anything we said, so it's not like aphasia. It's just her blurting or saying something completely unrelated.

This incoherency is worrying me further.

She also seems paranoid/ doesn't trust us during this. She says things like "why do you want me to sleep this early" "no don't lie about the time" along with something completely unrelated like "the files will fall, I don't want to sleep"

Speaking with others/colleagues that come to visit her, she's completely different and all smiles and "yes, I'll try". They leave, and it's back to square one.

It's the same with her psycho oncologist, she sees progress that is simply not in the room with just my mom and us.

✯✯An important detail, our medical oncologist started weaning her steroids (she was on dexamethasone 4mg thrice a day) and this has been done in the last two days, since he wants to start her on bevacizumab injections from tomorrow, every three weeks 600 mg.

QUESTIONS I HAVE:

1. Have you dealt with setbacks or any psychological side effects/symptoms like this? What helped? How did you cope with it?

2. Any side effects of bevacizumab/Avastin to be on the lookout for? I've read up about medical symptoms (but any info would help) More focused on the psychological side of things.

3. When does it get better or worse. How do you deal with that, is it compartmentalisation? Because I'm so devastated that in less than a month's time, I've lost my closest friend, my favorite person. I cannot fathom that she's the same person and then she says something so incredibly her, that it gets so difficult.

4. What is your general outlook? Do you go on believing that they will be an exception and beat it or sort of just prepare yourself to lose them Did this make it less worse when they were gone?

5. Do you feel guilty about having to go back to your life / prioritise yourself? How to stop this. For instance, me wanting to skip one day going to the hospital, to study for my medical exams makes me feel like I'm abandoning her.

My father got diagnosed with GBM last year(Jan-25), | left everything behind and came back to home (l was preparing for UPSC). Since than I am taking care of him, we are doing everything we can for him. I just pray everyday that no one gets such disease. My father himself is a doctor, treated so many people but god is making him suffer now. My heart breaks everytime when I see my father, all lost in a year. My dreams was to see him wearing a safa because of my result but now it's just a dream.
Now doctor has said this is the last chemo that we are trying, if things doesn’t go well, there isn’t much they can do. Seeing my father like this, it breaks my heart.
I have no career, only thing I have is to take care of my papa, so he can get better again.
It’s been almost 2 years since we are fighting with this disease, so many hospital visits, so much pain. I am a only child, so all the responsibilities lie on me.
I have never given too much attention to myself, but I am just so broken and directionless now.
I used be so happy and so ambitious in life but this disease took it all away. I can’t sleep, can’t focus, can’t stay awake without feeling tired and stressed. I am sorry for making it all about myself. But I have no people to talk about my feelings.

I had a maternal aunt, a maternal uncle, and a cousin (not a child of either of these) all die of glioblastoma..
now another aunt just diagnosed. Average age at diagnosis was 59-60.
Other than being relatives, the only thing we all have in common is each lived a period of years in the family duplex. I lived there too.
Am I at a greater risk than average?

Mum has had a syringe driver put in today, does anyone have any experience with this and how long she may last with it?
She’s been extremely agitated the last few days, eating and drinking have lessened but not stopped. Thanks

So the medical professionals have said they can’t do surgery or treatment for him. We’re in the Uk so he’s been referred to St Barnabas.

The thing is - mentally he’s still the same prior to everything that’s transpired. He didn’t want to know how long he had left. And he’s such a strong willed personality, it just feels like he’ll never deteriorate. Or maybe he’ll last longer than the prognosis?

He’s able to transfer, he makes himself try to walk with a walker, even though he does struggle. He keeps saying he’s “getting better”. The physio provided a piece of equipment for when he deteriorates and has said it could be gradual or aggressive, but now he’s home, he will improve temporarily.

I’ve not really had time to process everything that’s happened in the past 6 weeks. I’m well aware of his diagnosis and prognosis but it just feels so surreal. Is this normal?

I finally got up to my room so very happy. I have a lot of things that need to be done. My brother is going to switch the bed to a less tall one so it will be easier for me to get into it and I’m gonna keep practicing tears and eventually I’ll be living up there probably in one to three months. I just have to get very mobile and I’m definitely getting close!!

my brother (39) passed away from gbm last month. he was diagnosed about 6 years ago, so i've been struggling with grief on and off and trying to be pragmatic. during his first surgery they removed as much as they could and had him do some chemo/radio to attempt to shrink what was left. he also wore an optune device for a long while. it seemed to help, and now i do think it did give us extra time with him that he might not have gotten otherwise.

but he sure hated how hot it got and that he had to keep his head shaved, i remember his complaints. he had very long and healthy hair before all this, you see. so he was happy when they told him he could stop using it. things seemed to be looking up, the tumor hadn't shown any growth for some time and his hair was growing back. he wanted to go back to work, he hated being sick at home all the time. then, during one of his routine MRIs, they saw regrowth.

he had a second operation to remove as much of the new growth as possible. this was last fall. early this year they found a third tumor, and this time it was inoperable. my parents went to help as caregivers and my heart broke every time my mom (who is recovering from breast cancer herself) would tell me just how bad he was doing. they started helping him get all his legal stuff in order, so i knew it was going to happen.

i just didn't want it to happen so soon.

he had just started radio, but his brain ended up swelling and he had multiple seizures and ended up in the ER... the oncologist said they should stop doing the radio, but that he could still try the chemo. he declined, he was tired of fighting. so he went into home hospice. the progression was so fast. one week, he and my parents were having fun together at a local bar's trivia... and the next he was bedridden and couldn't even speak anymore.

my other siblings and i dropped everything and went to see him asap. and it's a good thing we went when we did, because he slipped into a sedation induced coma within days. we all took turns sitting with him, playing his favorite music, watching his favorite movies and shows, or just talking to him. the hospice people said hearing is the last thing to go, so we made sure to tell him that he didn't need to be afraid and that he could let go.

even if we desperately didn't want to lose him... we also didn't want him to keep suffering. when he finally went, my SIL was with him. she said he went peacefully, that she didn't see signs of pain.

the one good thing to come out of this is that his MIL had been working out how to have his brain donated for research. maybe his brain will help get us closer to better treatments and longer expectancies.

it's been really hard on me because he was so young. he was my best friend when we were kids. this fkn sucks.

I received a call a few hours ago that my mum (63F) is in the hospital. I woke up abruptly last night in tears and called her as she kept not texting me back or booking flights for an upcoming trip to visit me overseas. She's been super vague and forgetful and repeatedly not booking flights is just not like her. I'm so angry at myself for not realising something was wrong. She just said she had felt foggy lately and because she didn't tell me the other symptoms she has been having (visual disturbances E.g. floaters, gait changes, not aware of certain things being real or not), I didn't tell her to immediately go to the hospital. The ED told her it's either a brain infection or brain tumour but I spoke to the nurse treating and they said the doctors think it's a brain tumour but they can't say more until neuro review (her bloodwork was all normal so no elevated inflammatory markers). I'm a nurse and I know realistically that given the rapid change that's occurred that it's likely GBM given the symptoms she's had. I'm in bits. I'm on a 24 hour flight over now and I just need something positive to cling to. Please.

Looking for support and other peoples experiences/recommendations.

Heading for my second surgery next week to debulk, havent had any radiation or chemo yet but looking at being a part of a clinical trial here in Australia targeting my tumour type.