Hey all,

I’ve posted in this group quite a bit in the early days of my wife’s illness and I thought it might be helpful to provide an update. I know when she was first diagnosed I was frantically searching for people in a similar situation, so here’s what’s happened since my last post.

She was diagnosed in May 24, had craniotomy then followed the normal chemo/radiation process. She finished active treatment in March 25.

It hasn’t been easy, it’s been an emotional rollercoaster, but pleased to say her latest scan was stable - which was 2 years and 1 months after surgery.

My wife still hasn’t the energy and strength to return to her work, but she is active and we even managed a family holiday abroad this year. Our first for 4 years.

Finally, I know it’s a cliche but literally every tumour and every person is different. You will find people in this community (with the same diagnosis) where sadly things progress very quickly, and others who manage to go way past the median. We’ve given up trying to predict what will happen and try and take each day as it comes. (Easier said then done)

We’re based in the UK and happy to answer any questions if anyone is in the same situation, just drop me a message.

All the best to anyone else going though this as well x

Hi all, I have grade 3 Anaplastic Astrocytoma. I had a gross total resection in July 2024, did 33 radiation treatments then a year of oral tmz which I completed in October 2025. Since then I have been struggling with keeping on weight, I am 5’8 and currently 120 pounds, having lost 13 pounds since completing chemo. Has anyone else noticed that their relationship with food/ hunger queues seem to have changed since treatment? I’m trying to focus on eating smaller frequent/snacks and meals even when not hungry but I’m curious if anyone else has experienced the same? I do think my mental health has a played a substantial part as well. Thank you!!

Has anyone here had a cystic meningioma in the posterior third of the falx, near the superior sagittal sinus? Were you able to cure it or stop its growth? What treatment did you receive?

I know the prognosis for older people is usually very bad (months). His is on his left optic nerve, and he’s lost vision on the right hand side of both eyes.

Questions for the community:

- Do they ever just sacrifice part of your vision to resect these? If that were possible, I think my dad would prefer it.

- They have us waiting three weeks to see the oncologist which feels crazy with a three months to live time line. Is that a good sign that maybe things aren’t as bad as we think? Or a bad sign that there’s nothing they can really do?

- Has anyone else had this diagnosis in like an adult, rather than a young person with NF1 or 2?

Hi my cousin was diagnosed with medulloblastoma last year and following resection and radiotherapy was cancer free. However less than six months later the medulloblastoma has returned and his prognosis is 12 months due to its aggressive nature. It is unclear whether it has spread to his spine but the hospital won’t treat the spine. He has just started radiotherapy again. Does anyone know of any good therapies or treatments for recurrent medulloblastoma?

Hi everyone,

I’m part of a student team participating in a 12-week technology innovation challenge aimed at improving the cancer care experience for patients, family caregivers, and healthcare providers.

We know that beyond the medical treatments themselves, navigating everything else can be completely overwhelming. We want to hear directly from people with lived experience so we build something genuinely useful instead of making assumptions.

If you are a patient, caregiver, nurse, or oncology provider:

• What was the single most frustrating administrative, logistical, or communication bottleneck you faced? (e.g., tracking appointments across multiple specialists, understanding complex treatment plans at home, managing side-effect logs, navigating travel/transportation, insurance headaches, or clinic communication delays?)
• If you could wave a magic wand and have a digital tool or platform fix one daily hassle during treatment, what would it be?

Any insights, stories, or pain points you're willing to share would mean the world to us and help guide our project in the right direction. Thank you so much for your time!

A brain biopsy I had recently revealed that I have a grade 2 IDH1-mutant astrocytoma.

Has anyone else gone through this? I’m a little scared—I’m only 22, and my symptoms started when I was 19.

I totally understand why we need to get bloodwork monthly for the first year. What I don’t get is why I HAVE to have a followup appointment with my Neuro onc to review results when labs are normal. I asked if I could cancel the appointment if labs were normal and was told “well, we don’t have a mechanism to review labs unless you have an appointment”. That seems like a THEM problem and not mine. Is your hospital doing something similar? I’m on month 8 of normal monthly labs and it’s maddening to do the Monthly blood draws for no reason. It was only two months ago I got the doc to agree to let me do these virtual. Otherwise it was literally a 3.5 endeavour to waste time reviewing labs that are normal. Also doesn’t make sense because I know they don’t have enough providers for the clinic size so you’d think they’d figure out a way to make this more efficient.

Hello all,

My father was diagnosed with what they believe is a 1.6cm glioma in the optic chasm.

If you look at outcomes, it seems like it’s a mild condition in young people and rapidly fatal in older people.

I’m trying to see if anyone has any experience or insight.

bonjour à tous,

je vous lis depuis un an avec grand intérêt mais n’ai jamais osé écrire. Alors je me lance.

On m’a diagnostiqué il y a un an un astrocytome massif (plus de 10cm, inopérable) de grade 2. Je suis depuis sous Voranigo. Je supporte plutôt bien le traitement, mes valeurs hépatiques sont parfois un peu hautes mais rien de bien grave. Je suis aussi un peu fatiguée, et ai quelques crises d’épilepsie focales très légères. J’ai fait il y a un an deux énormes crises avec perte de connaissance pendant trois jours, mais les traitements antiépileptiques fonctionnent plutôt bien et depuis je n’ai plus que des crises focales deux ou trois fois par mois.

La tumeur est sur mon lobe temporale droit, et sur l’amygdale et l’hippocampe. Elle impacte ma mémoire à court terme, mon sens de l’orientation et ma concentration.

Ma vie est presque normale, sauf que je suis en arrêt maladie depuis un an, et que mon oncologue semble vouloir continuer ainsi.

Je me demandais donc si certains d’entre vous avaient repris le travail et si oui, dans quelles conditions ? Il y a des jours où je me sens super forte et ai l’impression que je pourrais sans souci reprendre mon travail, et d’autre jour où je me rends compte que la fatigue et la baisse de concentration rendrait cela très difficile.

Merci d’avance de vos témoignages et conseils !

Courage à toutes et tous, on continue de se battre !!

I thought of this gift for someone close that just got his brain surgery.
Is it too much or too funny ?

Hi, I saw some comments in recent threads around here that referenced people being a microbiologist, neurologist, or pain old enthusiast and figured I might have something of interest.

I was diagnosed with a “High Grade Glioma” in the “superior right aspect of the Cerebellum, abutting the Tentorium” in March of last year after a successful emergency craniotomy in Mid-February 2025.

Everything looked like a grade 4 histologically: Necrosis, high cellularity with irregular nuclei, microvascular proliferation, etc. BUT after the pathology went through a couple rounds at different facilities (Kaiser>UCLA>Mayo Clinic>NIH) the molecular and genomic layers of the pathology came back…weird.

This thing was certainly IDH-wildtype and unmethylated, but lacks most of the hallmark mutations that make it a slam-dunk GBM categorically.

I’m talkin no mutations in: TERT, EFGR, EFGRvIII, PTEN, CDKN2A/B, (+7/-10), NF1, PDGFRA

What WAS confirmed was alterations in: TP53 (duh), RB1, PIK3R1, NOTCH1, APC, BRCA1. It also had a low Mutational burden (2) and MSI stability. Weird!

The tumor also stained positive for GFAP, and negative for the loss that would constitute OGLIO.

Which led do the official diagnosis of “High Grade Glioma, Not Elsewhere Classified (NEC)”

Basically, it’s weird! Medically, it’s been treated as a GBM, and I already went through Radiation and 6 months of TMZ from April-Nov of last year.

There’s no real question to this, but any thoughts, insights, or questions are welcome. Anyone know something about anything?

This has been a difficult journey...

My partner (44F) was diagnosed with a WHO grade 2 oligodendroglioma about seven years ago. Her tumour is IDH mutated and 1p/19q codeleted. She has had three awake craniotomies over the years, but she's never had radiation or chemotherapy because everything had been relatively stable.

Until recently.

Her most recent MRI didn't show significant growth in size, but it did show new enhancement and increased perfusion around the tumour, which has led to a neurosurgical referral and a biopsy that's now pending. We're in that awful place where everyone agrees something has changed, but we don't yet know exactly what we're dealing with.

The hardest part isn't actually the MRI.

It's watching the person you love slowly become someone who has to work so much harder just to get through an ordinary day.

Over the last year her quality of life has changed dramatically. Her world has become much smaller. She sleeps far more than she used to. Her energy window keeps shrinking. If we have plans, they usually have to happen in the morning because by later in the day she's often simply exhausted.

She's developed much more noticeable word-finding difficulty. Conversations that used to come effortlessly now take real work. She knows what she wants to say, but sometimes the words just won't come. She gets mentally fatigued so much faster than she used to.

The seizures have also become a huge part of our lives. She has focal seizures, and she's also had generalized tonic-clonic seizures. She had another tonic-clonic seizure just a few days ago, and as many of you probably know, it wipes her out for days afterward. It feels like every time she starts climbing back up, another seizure knocks her back down again.

We've spent years adjusting medications, trying to find the right balance, hoping each change would finally give her some of her life back.

I'm trying to figure out what is the tumour, what is epilepsy, what is medication side effects, and what is simply the cumulative effect of living with all of this for seven years.

For those of you who have lived with an IDH-mutant, 1p/19q-codeleted grade 2 oligodendroglioma, especially several years after surgery...

Did your quality of life decline like this even before there was obvious tumour progression?

Did anyone else notice shrinking energy, increasing cognitive fatigue, more word-finding issues, and a much smaller daily window of being able to function before imaging clearly showed what was happening?

If you've gone through a biopsy after years of relative stability, what happened afterward? Did it change your treatment? Did things improve once treatment started?

I know every tumour and every person is different. I'm not looking for medical advice. I think I'm just looking to hear from people who've actually lived this, because sometimes it feels like we're navigating a map that nobody else around us can see.

Thank you to anyone willing to share your experience. It would honestly mean a lot to us.

Suffering and scared. ❤️

After having been diagnosed 15 years ago. Any thoughts?

My mum passed away just over 2 months ago. She was only 56. She was diagnosed with a brain tumour in April 2025, found out it was a grade 3 Oligodendroglioma after her craniotomy in June 2025 and she passed away in May 2026. I’ve spent so much time on this thread over the last year looking for positive stories and I found lots. It breaks my heart every single day that my mums isn’t one of them despite the hope I originally had.

I wanted to share her story as she endured so much. I haven’t found another person who experienced the specific nightmare that she had. I fucking hate brain tumours and their treatment, they’re fucking torturous and I’m so so angry that it took away my best friend. I’m only 27, she should still be here.

Anyway, this is more just a rant. It’s not a hopeful post but I guess sometimes there’s just a tiny bit of comfort in knowing others have suffered and I’m not alone.

My mums brain tumour was discovered incidentally, she hadn’t suffered any seizures are any major symptoms prior to us finding it, although looking back she did suffer a lot with headaches not that you’d immediately think that meant she had a tumour.

It was discovered on her left frontal lobe. It was operable and we were originally told it looked like a low grade glioma. After her awake craniotomy, pathology showed it was a high grade oligo and she would need radiation and chemo.

As she started to recover from brain surgery, the seizures started. Absolutely horrific to witness I cannot even begin to imagine the terror of experiencing one. She had full on tonic clonics and focal seizures - they never got them under control despite her being on the highest dose of Briv and trying other seizure medicines. She also had a tremor in both hands that never went away after surgery.

Radiation seemed fine, she was okay throughout. Then it was on to PCV chemo, this ended up being the beginning of the end. She seemed okay for the first two rounds. Then her blood tests for round 3 showed some abnormalities with her liver and platelets. Not too worrying at first. After delaying chemo we were hoping her bloods would recover enough to restart - that never happened.

Just two rounds of PCV caused severe liver damage and triggered an exceptionally rare blood disorder called Aplastic Anaemia. Her bone marrow was suppressed and wasn’t producing any red or white cells or platelets.

She got more and more unwell, her immune system was none existent, she kept picking up infections, had literally no energy and was at risk of uncontrollable bleeding. In hospital they’d treat the infections with antibiotics which further damaged her liver and we ended up in just a vicious cycle of her being unwell, treating it and then that causing other problems.

In the end she became too weak, she’d had countless blood and platelet transfusions and they weren’t helping. Her liver was destroyed and just to make matters worse her final MRI showed the tumour was already growing back.

It was and continues to be hell on earth. I miss her so so much. Why is life so cruel, she was unlucky enough to get a brain tumour why then was she even more unlucky to have such horrible complications with the treatment. I sometimes think maybe she’d still be here if it wasn’t for the chemo but I then worry about what the tumour would have done to her if she was still here as it was already coming back.

For anyone dealing with brain cancer, I’m so very sorry you have to go through this too. I hope your story ends differently to my mums.

I am happy I’m improving it’s slow, right hand still out.

Reposting from r/Glioblastoma -
I made these cards to give out to stop people from asking me the same 5 questions everyone else asks.

I would be HAPPY to share the files or make card designs for fellow patients. They are truly such a great thing for me - cuts bad convos short and also is totally amusing to me.

Just amusing myself over here while I’m dying :)

Has anyone else developed Shingles while on Vora? I have an Astrocytoma II IDH Reoccurrence. Initial Brain Tumor found in December 2023 during an annual MRI for my Multiple Sclerosis. I had a Biopsy that came back Oligodendroglioma II. Then had brain surgery in Feb 2024. Pathology came back that it was not an Oli but a Astrocytoma II (Nightmare) My NO talked a lot about Vorasidenib but then wanted to wait. Well in June 2026 my 6 month MRI showed significant Progression. Tumor board agreed it’s back and I should start Vora. It’s only been a week. So far I’m tolerating it well. But then last night I noticed an itchy/painful patch on my ribs and severe shooting pain that I know all too well, as I’ve had shingles before. I have no idea if there’s a connection to the Vora. I’m also under extreme stress, extreme stress! So I know that can also cause a flare.

Has anyone else experienced Shingles while on Vora? What did your NO do? Did you have to stop the medication?
Thanks

Idk what to do. My fiancé has a grade 4 diffuse midline glioma it’s on his hypothalamus and he finished proton in May. Last eeek he had clots in his lungs and legs. Monday we noticed he was severely fatigued after stopping dex. His oncologist said to being him into the er and that it’s not from that. They of course admitted him again. Once his oncologist seen him he started him back on dex. He was getting better and supposed to go home yesterday. But then after the mri he had while here Tuesday the surgeon took 28 hours to reprogram his shunt. We were on the other side of
The hospital and because xray said it was at a 3 she didn’t bring anything with her. We told her you need the machine to read it that xray was wrong last time. She didn’t believe us. Sent us for a stat ct that took 6 hours to read. No hydrocephalus no bleeding. She finally comes back with the machine and it was ay a 4. He’s already had 2 shunt failures and is very sensitive to pressure changes. And started to decline like he was in shunt failure again before she got there. He has quit talking. Now he can’t talk , wont eat or drink , won’t take his pills. And if he’s awake he barely looks at you. We noticed to his left side is weaker. Both arm and leg. Now I’m thinking he might’ve had a minor stoke. No one knows what’s going on. His pupils are reactive. Right now the plan is to do a lumbar puncture to test for infection and see if it relieves some pressure. But he has to be off the eliquis for 2 days so he can’t get it done until Sunday. He hasn’t spoken since Tuesday night and it was very short and not always answering us. Then it stopped yesterday all together. Most of his meds are iv now. I can’t just watch and wait. I need answers. And because we’re not married no one’s telling me anything unless I’m there. And all the drs come while I’m at work. His mom is with him then but they just say I don’t know and he’s on observation. When he lays flat he holds his head. Something is wrong. I know it. I don’t know what and I don’t know what to do. Oncologist says the tumor has grown some but it’s probably from proton. I’ve seen his scans and it almost looks like it’s starting to go to the frontal lobe. I’m so scared we’re going to lose him

Hey all, fairly new to TMZ. I’m taking my Zofran as recommended, 1 hr before TMZ, then TMZ then right to bed. I’m still fairly nauseous during the day between doses. Any recs? Looking to feel abit better during these times. Thanks in advance!

My uncle (56) was diagnosed with Grade 4 Gliosarcoma in January 2026. He’s been through two surgeries, radiation, a life-threatening crisis, and recently started Avastin after identifying leptomeningeal spread. We’re now (July 2026) in the final days. He’s sleeping almost constantly, barely waking to eat or drink, and has been saying “only some days left” repeatedly.

We’re struggling with the practical side, he can’t reliably wake up to take his oral medications and we’re spending an hour trying to rouse him each time.

For those who’ve been through this, how did you manage medications when waking them up became impossible? We don’t want to force feed him and cause him so much distress.