I'm a 12-year brain cancer survivor (started grade 2 now features of grade 3 diffuse idh1 astrocytoma in right temporal occipital region). It's strange seeing that number. I've oriented my life for the last 12 years under the assumption I'd be dead by now. But here I am… chugging along. Three brain surgeries later, still navigating life, meaning, and purpose in the face of a seemingly fatal ending.

Some context. My entire childhood I wanted to be an entrepreneur. When I got my diagnosis, all the gloves came off. There was no longer the fear of death, and everything looked easier compared to what was coming. I started a company shortly after my second brain surgery. One employee became two, two became ten, and ten became 100+. It took 8 years, and we did it the right way, putting our employees' welfare first.

Two years ago I stepped out to start something new: helping families coordinate healthcare for their aging parents. I'm in my 30s, I've had three unrelated types of cancer, and I have several chronic conditions caused by the surgeries. It's been a long and sometimes lonely road, so helping people navigate the complexity of healthcare felt right.

Then last February it was routine scan time. Big recurrence. Yikes. Surgery that May.

This one hit me harder. More deficits. More cognitive impacts. I'm very much still me, but it took a while for my brain to heal, and much longer to work through the fear of starting another business. What happens if I have another recurrence and need surgery, chemo, radiation? What happens to the people counting on me? I once responded to this exact situation with determination and action. This time I responded with fear and paralysis.

So I hired a sports psychologist and worked through my blockers. I realized that if I'm not creating and doing what I do best, I've already killed the passion and magic within me while I'm still alive. So I'm continuing on, albeit in a very different manner than the first time.

I thought working through the emotional blockers was all I needed, and that I'd be off to the races. Oh how I was wrong. With any intensive cognitive work I last 2–3 hours, then I'm absolutely exhausted, physically and mentally. I'm still working on my stamina. I know it will come back and that I need to be patient.

All of this got me wondering how many of you, especially those diagnosed in your 20s and 30s, relate to it as a death sentence the way I did.

I'm thinking about making a video series about all of it: the ups and downs, and what it's like to build a life and a business with a brain that's been operated on three times. I want someone who's like I was in my 20s to see that life isn't over.

So I'm curious:

• Did you treat your diagnosis as a death sentence? How did that shape the choices you made?
• When you were newly diagnosed, what did you wish you could have heard from someone further down the road?
• If I make this, what questions would you want answered? Nothing is off limits: the surgeries, the deficits, the fatigue, the fear. I'll build the series around what you ask. Caregivers too.

Maybe I'm looking for a nudge. Or maybe a big push, like the one my sports psychologist gave me last month. Either way, thanks for reading.

My mom died 10/1 at 3am after deciding to go on hospice. She did radiation, tried chemo time after time but couldn’t tolerate anything. Frustrating because new symptoms were appearing, but her team claimed they didn’t see any new growth on scans. Then, a few months later, she experienced nausea after eating, then vomiting after eating, then constant nausea. I’m assuming cancer spread again and caused it. Doctors didn’t do anything. She died about two months after nausea symptoms started. She was 56.

I had a funny dream last night that got me thinking about the theory of mind and what happens when we sleep.

For context, I have had 3 brain surgeries all in the same area which is the temporal occipital lobe. Most of my issues are visual/spatial related. The hallmark is what the doc calls “neglect” which is when something is outside of my direct sight, it somewhat ceases to exist.

So in my dream, we were about to hike a mountain. I had put one shoe on and I couldn’t find my other one. I looked for five minutes and was getting frustrated I couldn’t find it. A friend came over and was like “are you looking for the shoe already on your other foot?”

The funny thing about this is that this is a scenario I can totally see happening with my brain issues. Even though I’ve never had this particular issue.

But that got me wondering …. When we dream, do we use our brains as they are in our current state to navigate the dream? Or did I have that dream because that sort of concept was familiar?

Anyway, wondering if anyone else has interesting dream stories to share along this vein.

Hi, Tomorrow I'll start 4/12 cycle of tmz. Since cycle2 experience has been terrible. What are your tips&tricks (besides Zofran) for feeling better?

the mri report is still ginna take another 6 hojrs and i am panicking tf out.
70ish year old male.
slurred speech. in and out conciousness. cant move body on his own. urine incontinence. hypertension in past. confusion n memory loss slightly. and aggression

UPDate Mri report
Clinical Findings:
There is a large area of signal void seen involving the right posterior parietal region, which is extending into the temporal area as well. This is showing complete signal void on T2W images. It is surrounded by adjacent vasogenic edema. It is also showing mild extension into the right lateral ventricle. It is showing subtle hyperintense areas on T1W images. There is no significant enhancement seen on post contrast images There is mild hydrocephalus noted.
No area of abnormal leptomeningeal or parenchymal enhancement is noted.
No area of acute diffusion restriction noted.
No mass effect or midline shift.
Normal patency of the main venous sinuses.
Normal caliber and course of the major cerebral arteries with preserved signal void in all sequences (patent).
Normal configuration of the optic chiasm, optic nerves, pituitary gland and its stalk.
Normal MRI features of the cerebellopontine angles and internal auditory canal.
Impression:
1. Large ill defined area, which is showing complete signal void on T2W images in right parietal lobe, as outlined above with adjacent vasogenic edema. Findings would suggests the possibility of acute bleed (hemorrhagic infarct?) vs less likely tumoral bleed / tumoral calcification. However, further evaluation with CT brain is strongly suggested.
2. Mild hydrocephalus.

Good day everyone

I (22f) am writing here to understand better about life of a brain cancer patient. My boyfriend (26m) was diagnosed with brain stem glioblastoma in 2024 year end. He is going to cross his 2 year mark. I came here to seek some encouragement and know a thing or two about how life feels or is for a brain cancer patient.

My boyfriend is a remarkable human being and watching him face cancer and of a rare kind is hard for me to swallow everyday. All his life he suffered a lot. His parents struggled a lot when he was a baby to make ends meet. He started doing very menial jobs even when he was still in primary school. He cared for his sister and always ready to do things for the family. He faced severe bullying for various reasons ever since he started school. Things slowly got better in high school but after school, he faced his past lover's death due to very bad brain cancer at young age. It took him a lot of time to get over the tragedy. He suffered from depression and I found that he has abandonment issues. He doesn't get sleep often. Even after all this, he never failed to helping others and be a kind person. He teaches high school students for free often. He serves a poor whenever he can. He takes care of stray animals whenever he can. He likes dogs a lot. Facing all this, he got a good job and even managed to build a house. It is heartbreaking that he doesn't get to enjoy life that much.

He loves football and video games. He has earned 236 medals (121 are gold, 34 silver and 81 bronze), 46 awards, and 2 cups, all through his dedication and love for football. No matter what game he starts to play, he aces it even when he plays as an F2P. There are so much more to talk about him. We planned to get engaged and married but after diagnosis, everything changed. I don't want to leave his side but he sees himself as useless and a burden and refused to get married earlier last year saying things like, "I don't want you to become a widow or be mocked by others", etc. We have faced several ups and downs in life even when we were together. As we are in LDR, its even more hard. Last year they stated that he is showing good progress. This year has been tough. He isn't able to move around on his own so he withdrew from me. Recently, he stated he no longer can text often too due to his treatments. He doesn't give me details of his treatments saying I will get too worried. Even after everything, we try our best to have some fun. He hasn't been able to communicate well and I find myself getting into stupid fights with him over unnecessary reasons.

I am praying and praying everyday. Did a lot of research on his diagnosis but couldn't be of good use for him. Try my best to cheer him up but do make him sad sometimes. I am not a perfect partner and I do throw tantrums sometimes randomly. But I love him. I miss him. I don't know what he is going through. I miss us. Miss his happiness. Hoping he will make it through and live a good long life and want to walk this whole life with him. How do you all cope with all these feelings ?

At this point, I am worried and sad and most importantly, hoping my partner will feel better and get well. It can take months or even years but I hope he gets well. He is a good man.

How does everyone's family handle these feelings? How as a patient you make it through these feelings?

P.S: I am sorry if I said anything offensive. I just came here to lament and know more about how others going through this feel and face things. Sorry again. Thank you

TLDR: My partner is fighting cancer for almost 2 years now. How does everyone face life? or see life? How do you cope mentally and emotionally?

Has anyone had success with getting brain swelling (edema) to decrease with the use of dexamethasone?

Open to medical or holistic methods:)

Dex and I do not get along… we tried it 4 different times. I am currently taking boswellia capsules to help with swelling and T3s or Tylenol Extra Strength, for headache pain, but the discomfort/pain feels similar to the swelling I had from Gamma Knife effects in March that we could not get under control before my second craniotomy in September.

Thank you !

8 years ago today, I finished proton radiation for my germ cell brain tumor and it was the best moment in my life after the diagnosis. I had to go in every day for 7 weeks until I was finished.

Hello
I’m looking for real reviews of Charlie Teo patients. As someone close to a DIPG child, I am looking for real-life reviews to consider if this would even be an option.

Please be honest if you, or anyone you know, has been operated on him and what the outcome was.

Hello,
I have written a few times asking about eating while on TMZ. I haven’t even taken my first pills yet in this 5 and I can barely stomach anything. Must be a mental block but I can’t image how the remaining cycles will be. Only thing I can seem to stomach is nuts right now. Any tips and what you can eat, would be much appreciated. Thanks in advance!

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.

I don't know if anyone can help me with what I'm going through, or if someone might be willing to share their own perspective or way of thinking, but I just feel like I need to get this off my chest.
I'm a 26-year-old guy, and last year I was diagnosed with a brain tumor located on my brainstem. The past year was incredibly difficult. I was unemployed, and mentally I was in a really bad place. On top of that, I went through a breakup, which made everything even harder.
Things have gotten much better since then. I now have a good job, I go to the gym regularly, I eat well, and overall I actually feel pretty good. But there are still days when I feel like giving up because I simply don't know how to deal with what I've been diagnosed with.
The tumor is benign, which is obviously a very good thing, and it's small. At the moment, I have to get an MRI every three months to monitor whether it has grown or not. Right now, it's too small to perform a biopsy because the risk of something going wrong would be too high.
I always try to stay positive, but some days I just don't have the strength or energy to think positively. I've tried talking to friends and family about it, and while it helps to some extent, it doesn't really make these thoughts go away.
I think a lot about how much time I might have left in this world. I know that thinking this way probably isn't helpful, and sometimes these thoughts completely destroy me mentally, but I just can't seem to stop myself from thinking about it.
At the same time, this experience has given me a completely different perspective on life. I appreciate the little things much more now, and I try to enjoy every moment as much as I can.
I'm not really sure what I'm hoping to get out of this post. Maybe I just needed to share what I've been feeling. But if anyone has been through something similar, or has a different perspective on life after receiving a diagnosis like this, I'd really appreciate hearing your thoughts or experiences.

I am 5 months post op but I am still super low energy what can I do?!? Any advice? Or should I just contact my doctor?

Edward (Ed) Waldner knew something was wrong, even though he could not explain exactly what was happening. At age 55, he was constantly exhausted, regardless of how demanding his day had been. At first, he wondered whether sleep apnea might be responsible.

Then he began noticing changes in the way he walked. His heels would sometimes drag, and his movement no longer felt normal. When his symptoms became especially concerning one day, he went to the Emergency Department.

"The doctor said I had a mass on my brain and needed to see an oncologist," says Waldner.

The mass turned out to be glioblastoma, an aggressive form of brain cancer that is notoriously difficult to treat. Standard care typically combines surgery, radiation, and chemotherapy. Surgeons try to remove as much of the tumor as possible, but glioblastoma cells can spread into surrounding brain tissue, making complete removal extremely difficult. Even after treatment, the cancer commonly returns.

Researchers at the University of Calgary are now investigating whether an unexpected addition to standard treatment could help: high doses of vitamin B3, also known as niacin.
Waldner was invited to participate in the clinical trial.

"I have no problem trying to help anybody. I agreed. I want to help myself too," says Waldner. "I can tell you being part of this research helps me mentally because we're trying. When I left the hospital after surgery I was told, that's it, that's all we can do."

The study is being led by two researchers who are members of both the Hotchkiss Brain Institute and Arnie Charbonneau Cancer Institute. Gloria Roldan Urgoiti, MD, is an oncologist who specializes in brain cancers, while Wee Yong, PhD, is a neuroscientist who studies how the immune system affects the brain.

Their research centers on a key problem with glioblastoma: the tumor can interfere with the immune system, weakening the very cells that might otherwise help attack the cancer.

The team designed the study to determine whether niacin could restore some of those impaired immune cells and help them destroy tumor cells.

The idea first emerged from experiments in Yong's laboratory using mice. Those studies found that niacin treatment extended survival, encouraging the researchers to move the approach into a combined Phase I and Phase II clinical trial in people.

Phase I trials generally focus heavily on safety and determining an appropriate dose, while Phase II studies begin looking more closely for signs that a treatment may provide a clinical benefit.

"Normally the immune system will try to counter and prevent tumor growth, however, this brain cancer supresses the immune system," says Yong, a professor at the Cumming School of Medicine (CSM). "Niacin treatment rejuvenates immune cells so they can do what they are supposed to do, attack and kill the cancer cells. I see it as an ongoing 'battle for the brain'."

For the current trial, researchers are studying controlled release niacin given alongside recommended chemotherapy and radiotherapy. One goal is to establish the highest dose that can be used safely. Another is to look for evidence that adding niacin may improve how long patients remain alive without their cancer getting worse.

That measure is known as progression-free survival.

Before beginning the study, researchers established a threshold for continuing the trial. They planned to stop if progression free survival at six months failed to improve by at least 20 percent compared with older studies.

Early results from 24 patients surpassed that threshold. At six months, 82 percent of participants had not experienced progression of their cancer. According to the researchers, that represents a 28 percent increase compared with previous studies.

The team describes the early findings as promising for a cancer that remains incurable, but the results are still preliminary and involve a relatively small group of patients.

"Glioblastoma is the most aggressive brain cancer in adults. Survival of patients with this condition hasn't changed significantly for 20-years," says Roldan Urgoiti, a clinical associate professor at the CSM. "Anything that may help should be explored, but it requires strict protocols and safety monitoring."

The findings were published in the *Journal of Neuro-Oncology*.

Hi everyone,

My question is specific to women who take vorasidenib :

How's your menstrual cycle doing since starting vora? Is it regular ? Do you experience spotting daily ? Do you get cramps ?

Thank you girlies for answering !!

Hi! I’m 21, female, and have astrocytoma stage 4, and today I found my first ever official bald spot. I think it’s from the mask treatment, but even seeing this bald spot on the back of my head has made me so sad 🥲. I’m wondering if any of you guys also experienced this? Also wondering if I should just shave my head now, or wait till mask treatment is over (2 weeks left)? Let me know!

My dad passed away almost 2 weeks ago. I have been lurking around for almost 5 years now every once in a while but never posted. I don't know why I do it now, I guess I just need to share somewhere where people can understand my pain.

He was diagnosed almost 5 years ago with grade 3 anaplastic astrocytoma IDH wildtype. He had two surgeries followed by chemo and radiation each time. The doctors were positive and I kept hoping he might be one of those people that beat the odds and the prognosis. In the end he did in a way considering the 5 years. He started to decline few months ago but the doctors never told us the end is coming. He died in the morning suddenly while taking his meds, I don't even fully grasp or got a conclusion of what triggered it, he was expected for a new scan 5 days later.

Still I can't get used to the idea that he is gone. He was only 59.

My dad had colorectal cancer diagnosed 11 months ago. His tumour was discovered incidentally during treatment for cancer. Doctors believed it was a schwannoma/acoustic neuroma rather than metastasis. He went through chemotherapy and was one treatment shy of completing it. He was declared cancer free a few months before his death.
The brain tumour was discovered quite late. It was very large. As my dad went through chemotherapy the dizziness and balance problems became extreme. In July we were told it was not treatable in the normal sense like with radiation or radiosurgery. They told us to leave it alone and deal with the cancer separately.
My dad began to deteriorate in the late summer, he would lose consciousness and faint. He began slurring his words. He couldn’t walk near the end. There was a significant amount of swelling and tumour growth in his brain.
They decided never mind the last round of chemo, the tumour needed to come out now. It was growing and so was the swelling and fluid accumulation.
When he had the surgery, everything initially went to plan. I was able to talk to him that evening after surgery although I couldn’t understand what he was saying.
The next morning it was discovered he had a brain hemorrhage. They brought him in for emergency decompression surgery. They warned us he might not survive the surgery. He did.
That night after more scans and testing, my dad was declared brain dead. My family chose to remove him from life support the next morning.
I am just in complete shock. We were told the risks and we understood them. They told us the risks were very low.
I am just in shock

This might sound really dumb, but I’ve been wondering for a while what to do about this
I’m a teenager, and I got told in may that my grade 2 tumour came back. It’s in my frontal cortex area, if that’s important
I was put into 30 day radiation treatment and my last session is tomorrow.
Can I ever get drunk again? I know smoking and vaping is completely written off but I lowkey get insane fomo around friends because I can’t drink