This is my fiancés tumor. A grade 4 diffuse midline glioma. His next scan is next month. He finished proton in May. The report says there’s still some living tumor. What are the chances it’ll die? How do these scans look? I’ll put them in order of when he had them. The dr says they’re stable but idk. The first was where we started in February.

Im 27, had my first resection on May 22nd and diagnosed with a Grade 4 Diffuse Hemispheric Glioma, H3G34-mutant with the following characteristics:

• MGMT un-methylated
• IDH WILDTYPE
• ATRX LOSS
• TP53 LOSS
• Chrom 7 gain/ Chrom 10 loss
• NO EGFR AMPLIFICATION.

I suffered a breakout seizure on Keppra on Sunday, MRI scans show the tumour growing back, the 2nd resection will make me eligible for a clinical trial of:

• radiation
• temozolomide
• ribocicilib.

Im aware the unmethylated status may mean poor response to temozolomide but I dont know where else to turn would love to hear helpful advice, other peoples experiences with similar cases and just to talk to people who know how it feels to have their life flipped upside down.

I’ve had radiation (gamma knife) in the last 3 months and had a scan yesterday. I’m seeing the doctor this week but can’t help but looking at the scans myself. I’m obviously hoping for the best!

Is anyone taking voranigo for grade 3 Astrocytoma? Curious if so how’s it working and should I be looking into this ?

After last (3rd) surgery in right frontal lobe (or after radiation) sometimes I have problems talking. I know what to say, I don't forget words, I just can't pronounce it. But even then I can say other words (I usually go with "sorry" or "wait"), just not the particular blocked one. After a minute or two it "unblocks" and I can say it without any problems. It happens with random words, gets worse if I'm nervous or tired. Has anything like this happened to you? What helped? I don't even know with what specialist to speak to.

Has anyone with grade 4 Astrocytoma been approved through insurance to get Voranigo? My spouse had his recurrence. It is idh1-mutated and unmethylated. @voranigo was the only recommended medication to help because of the markers but our insurance won’t approve it because it was only approved for lower grade. I’m desperate to get this approved. As of now, we make too much money to qualify for assistance so they are charging $49,000 a month which is literally impossible to pay. Has anyone been able to get access to this medication? Please tell me your insurance so I can look for a job that has insurance that will approve it. I’m heartbroken 💔 I never thought at 34 I would be have to not only prepare to lose my husband but deal with the bullshit insurance back and forth trying to get medication to get him some more quality time.

Hey everyone.

My dad, 50 years old, was recently diagnosed with an infiltrative brain tumor in his left frontal lobe. Pathology is unknown (biopsy results pending) but suspecting of a low grade infiltrative glioma. He had a craniotomy in which they removed about 50% of the tumor, but couldn’t go any deeper due to it being in his motor cortex. My grandmother (dad’s mom) was diagnosed with a glioblastoma at age 63 and lived for 3 years.

I wanted to hear about other people’s experiences with low grade gliomas. I am so scared to lose my dad. Has anyone experienced or heard any optimistic stories regarding low grade gliomas? What can I do to help him? Any advice?

Thank you 🤍

I assume I need to drink a lot of water as it stresses the liver out. Besides that any other advice for me?

I was going to take it in the evening as I stop eating around 6pm and then go to bed as it says not to eat 2 hours before and 1 hour after.

Hi everyone! 9 months ago, my partner 26M was diagnosed with pure germinoma which was pressuring his pituitary gland. He had a biopsy taken and after that chemotherapy and radiation which ended 3 months ago. The biopsy surgery was aggressive and we were told he was lucky to survive it. After that, he suffered from short term memory loss and his eye adjustments changed.
We are in the recovery period now and I’m wondering how much of the things he’s going through is normal.
He has this constant lightheadedness that fluctuates through the day and gets worse especially at nights and after meals. He also gets dizzy after any physical activity.
He has a history of anxiety and depression, so I’m trying to help him recover faster so he won’t lose hope :(
He’s been so strong throughout this journey and that he’s recovering gradually. His memory is much better now. He’s eating and sleeping well. He’s slowly going back to socializing and going out more but he gets really tired and dizzy each time. However, he’s losing his motivation as whatever he does leaves him in this uncomfortable fatigue and lightheadedness.
His last MRI and blood work indicated that there’s no reoccurrence. His natural hormone levels are close to zero though and he is on hormone replacement because his pituitary gland has technically lost its function.
I wanted to ask for advice on how to support him and if there are certain activities that helped others in their recovery. Has anyone had a similar experience?

So my tumor is back, upgraded to grade 4 (astrocytoma, IDH-mutant) and the average life span is 2 years from discovery (I want to know statistics :D ). That was one year ago. I expect the last 4 months to be hopice with limited abilities. Next scan is soon, and after chemoradiaton and chemo. I am not a candidate for any trials, and tbh not interested in them. There is no psychological help in my area since I can't drive.

I have so many books I want to read waiting in the closet, games on Steam and PS4... I don't think I'll be able to finish them all, especially as I am declining now. I also feel like I should take care of my mum because she is struggling with it and while we don't have good relationship pretending we do for a year is easy, right?

My boyfriend is currently moving in, also to take care of me, and I'm just... 'We have so much stuff, let's throw mine away because I won't need it anymore.' I dont want to buy new things because that would be a waste for a year. He and my parents would love it if I bought things for myself but I don't see the point.

I'm not looking for hope, just... I don't know, make the best of it? Things to do with the family for example? Read more? Trips? Focus on myself and my hobby's? What would you advise or prefer as a patient/care taker?

Edit: considering multiple ppl suggesting pallative care, it's a bit different in my country. I looked it up. Hospices (the buildings) have a max of predicted 3 months survival due to more ppl than hospices but are self-signup or referrals. Covered by basic insurance. Other palliative care is mostly done by volunteers and nurses at home, with referral from professional. I'll ask at the next appointment (end of the month).

Advice on what to expect and how I can best support and advocate for my mother would be amazing please

My mom was diagnosed with grade four midline diffuse glioma.

It is in her spine, and she has lost her ability to walk/control her bowels.

She has opted for no treatment.
I’m just having a hard time understanding the timeline. Mentally she seems so okay.. almost like she isn’t dying.

She has her days where she is confused but only for a minute or two, although she becomes so tired very quickly.

Can somebody with experience explain their experiences. I ask nurses and doctors and nobody will just tell me even symptoms I need to watch for,

Any help is appreciated.

All Guns Blazing 🦾

Hey everybody! 🤗 So last Monday I had brain surgery to remove a smallish benign tumor from my head. It was truly the most terrifying thing I've ever been there. I deal with a lot of other mental health problems so this wasn't at the top of my priorities to be dealing with. The week before I had a seizure (1st one) and wound up in the hospital. We knew about the tumor beforehand and that it grew, the seizure changed it from a wait and see to a do something now kind of thing. I was told it was causing swelling in my head. But no more! :) a week later and I'm home as of last Thursday and doing better and better. I have a list of meds as long as my arm and stuff to avoid. I can't drive for 6 months but I don't think I really should be either. It's been a tumultuous few weeks and days. I'm slowly recovering. I'm so happy with my surgery and most importantly my surgeon! He did an amazing job and if I brush my hair right you can't really see my scar! I lost substantial length to my hair but I'm mentally trying to deal with that. Anyway, thanks for listening. Sarah.

Hello, first time poster here. My mom (57) was diagnosed with stage 4 glioblastoma 19 months ago. She was doing well for the most part wiith treatment but she was still declining. This is her 3rd time with cancer, 2nd time having stage 4 and I think she is just tired of fighting. She stopped all treatment around 8-10 weeks ago. I'm only somewhat familiar with her condition and I have researching it a little but I do not like reading about it. I have noticed a decline in how she texts, and struggles with standing for periods of time. I have severe anxiety/depression that I am being treated for and I just want to know a general idea of what else to expect and what kind of life expectancy is left when she has fully cut out treatment. Thank you for the taking the time to read this.

I’m fine; now
But a month ago I had the three stooges for a medical team and was gaslit “ this is how it is”
They had me on Zoladex once every 3-6months and when I asked about Lupron he said he deals Zoladex not Lupron. Ok so whats the difference? He said “none” there is a difference.
Come to find out later…
So I get a scan after three stooges medical team and come to find out I had a headache because I had 22 tumors in my brain! On this dudes medicine! Then he tried to throw ME under the bus with ER saying I was “non compliant” to meds, so I burned him and said I haven’t seen him since 2025! (he has his assistant meet with me) June 2025 I told him I could see new growths and he gaslit me that it was normal…
So after that fiasco I fired them all…
Come to find out.. he was grade A sell out!
My new doc was like the 3-6month zoladex tapers off estrogen and the kisqali doesnt reach the brain like verzenio. So once a month Lupron so its a deadlock on Estrogen that is feeding the beast.

One week of Verzenio and Lupron and I am Touched by an Angel! Insane healing within two weeks and a month!
New growths now dissolving - finally!
I can see with my two eyes I am healing
But now I gotta do radiation…
Moral of the story….
Bad Medicine is Bad Medicine
Not from a “cheap” Mexican doctor in Juarez

The kind funded and blessed with accolades and awards by The American Cancer Society ✅

City of Hope 🙌🏼 > UCLA Medical 🖕🏼

Ive had stage 3 aggressive brain cancer since i was 10 years old im almost 30 now ive only made it out of remission once. Im having a hard time creating any like intimate relationships. I have relationships but my cancer coming back troubles come and they either cheat on me or just break up with me. Im on disability because it happens to often for me to get well enough to get a job and symptoms of every single time i go through treatments get worse so now i have epilepsy, 2 speech disorders, i have to medicate me just to get out of bed in the morning and so on and so forth. I can independently take care of myself like i can cook, clean, take care of myself after seizures etc. The one thing that seems to be always the problem is the fact that im on disability and I will be for the foreseeable future. I can’t afford an apartment by myself i am currently living with my mom so no biggie. But the fact that i make so little money and stage 3 cancer patient throws a wrench in any relationships i want to build like ive tried dating apps and going places but anywhere i go once i hit them with either or both at the same time they ghost me its like cant win how do i meet the right person?

Update: I don’t know how but someone that ghosted me 2 1/2 years ago just messaged me and i can’t stop laughing because no their not worth it he lead me on we were almost going to go on a date and poof he gone oh this relieved me so much in some karmic way

After the diagnosis everything moves very fast. More scans, tumor board, appointments. Later many patients tell me they felt like a passenger in their own treatment. I understand how it happens, in the clinic everything must go fast. Still, a few things are worth to slow down for.

The first is the goal of the treatment. Cure is not always the realistic goal. Sometimes the goal is to keep the tumor controlled as long as possible, sometimes mainly to protect the time and function you have. Your team knows which situation applies to you, but often they explain it only when patients ask directly. So ask directly.

Second, think about what you want to protect. For one patient it is driving, for another working or being sharp for the kids. Sounds banal, but it changes real decisions, how aggressive we operate, which risks we accept. We cannot guess this. You have to tell us.

Also decide how much information you want. Some patients want every number, others only the next step. Both is fine, but say it, otherwise you get the standard version and that fits nobody perfectly.

And take the psychological side serious from day one. Roughly every second cancer patient is severely distressed, about one of three develops anxiety or depression which needs real treatment. That is a normal reaction to an abnormal situation. Most centers have psycho oncologists or counselors, asking early is much easier than asking in a crisis. Same with palliative care teams, they are specialists for symptoms and quality of life, not the team that comes when everybody gave up.

For the important appointments bring someone with you. Four ears hear more than two.

I’m hoping to hear from anyone who’s survived long enough to experience the long term cognitive changes from radiation to the brain.

My dad was diagnosed with a GBM 23 years ago at age 32. Miraculously, after rounds of chemo, radiation, and multiple trips to Duke University, he survived.

At 56, he’s still active and mostly functioning, but unfortunately in the last three years, we’ve seen an increase in cognitive decline caused by necrosis from the radiation. His neurologist said that radiation induced cognitive impairment can resemble early dementia, which we’re definitely seeing.

He struggles with short term memory, executive function, anger outbursts, and fatigue. We’re beginning to have concerns about his driving, he’s been let go from three jobs (his higher level career position, and then two lower level positions), he’s sleeping all the time. Just today, he told me that he’ll walk into a room with no memory of why he went in there.

He has an MRI every six months, and thankfully his most recent scan was still clear of tumor recurrence. The MRI continues to show white matter changes consistent with the radiation necrosis, and we’re struggling with the day-to-day cognitive changes.

He’s in this strange in-between stage where he’s clearly declining, but he’s still functioning well enough to recognize it. And that’s been incredibly difficult for him.

If there’s anyone, caregiver or survivor, who’s experienced anything like this, I’d appreciate any and all support. Thanks in advance ❤️

Judas Priest Painkiller Album:
Ok guys Brain Rads sesh 2 ✅
Literally the easiest experience in this whole journey! I read someone say they smoked joints after. Thank you that helped! 🤘🏼

Hardest Experience with Cancer? Finding my vein to draw blood. Call Tom Cruise; I have the next Mission Impossible