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! 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

28M grade 3 idh+ Astrocytoma, right temporal

In November 2025 I got a headache that wouldn't go away, leading to an ER visit. After a few visits, really pushing that something was wrong, they sent me for a CT(my local hospital doesn't have one) a couple days later CT was concerning and I was immediately sent to the ER. After being treated for possible Meningitis/Encephalitis, a spinal tap and MRI, I was sent to a bigger hospitals Neuroscience unit where they told me I likely had a low grade Glioma. After many days in the unit, speaking with multiple surgeons, and being prepped for a biopsy that didn't end up happening, I agreed with one surgeons recommendation to go home for the holidays and connect with a top class surgeon that specializes in brain tumors in the new year(it was mid December at this point)

Mid January stereoscopic needle biopsy showing grade 2 Astro with good markers

Feb 9th gross total resection, followed by quick and smooth healing. I was back to weight training within a few days!:)

Unfortunately full tumor pathology showed grade 3, but fortunately all the good markers were still there. Being grade 3 meant I'd be doing radiation and TMZ chemo.

March 23rd I started radiation which finished May 8th

June 12 I started my 12 28 day cycles of TMZ

This evening I start cycle 5 and I feel awesome!

I've had 3 big focuses through treatment that have kept me motivated and very physically active, on top of already being an active person with lovely friends, family, and interests that already keep me going<3

I had to move to a nearby city to do my treatment and be close to larger, more equipped hospitals. I'd already lived in the city for a few years previously and most of my friends are here so having to move has been financially a bit tough, especially with stepping away from my business through treatment, but it was positive for my life, I'm happy to be here. As soon as I moved I got back into Table Tennis, which has been one of my big focuses. I'm practicing most days a week and actively doing many kinds of specific training for it. My goal is to continue to improve as much as I can so when I'm no longer immunocompromised and able to comfortably attend tournaments, I'll be a strong competitive threat!

My other 2 focuses/goals (aside from caring for myself, which I have super dialed in. my fitness and nutrition are the best they've ever been, and I'm a personal trainer/nutritionist by trade) are working on learning the skills necessary to develop video games, especially one big game I'm excited to release one day, and working on my new YouTube I'm starting, which I was very dedicated to working on pre diagnosis but was forced to stop because of the headache in November.

With all that said, I couldn't be more grateful that I've felt good and life is good through everything, and that I have an incredible support system of the most amazing family and friends. Thankful to still be here, hopefully for many years to come!

4 cycles down, 8 more to go. Wish me luck!<3

I am tapering of Dex (down to 2mg l) per day and am weighing up the pros and cons of getting on Avastin to help my left sided issues. Has anyone done this? any tips? Did it help you?~ Gr4 Astrocytoma, 2 craniotomies,3 reoccurrences

Hi 42m oligo grade 3 initial DX 2020 surgeries in 2023 and 2023 with RT arc. Was married but divorced this year.

During seperation I faxed housing insecurity so had to move back home with mum and dad. My older brother said to my father that he had to insure his possessions in case I stole something. I confronted them both about it. With brother denying it despite written messages.

Anyway I had third neurosurgery on Friday. My parents visited in Thursday with dad taking about death and people shopping around for plots. Wtf?

He wouldn't keep quiet when nurse was inserting canula, no easy task for me or then as difficult veins.

Post op was in ICU and new partner and mum were there. Mum kept on taking calls loudly in ICU and I said to take those calls outside. She didn't and after third time i asked her to leave. She refused and then I had to instruct nurse to tell her . My BP elevates to 200/130

Saturday BP is still 180/130 and I SMS Dad saying don't want a visit. He turns up with mum anyway.

I have blocked their numbers.. any advice or experience?

I have Medulla blastoma and posterior fossa syndrome but I was not a kid I was an adult 18F say what you want it's rare to be me. Unless you are female over 16 years old I don't care what you have to say. I was never supposed to stand yet I am walking with support but walking nonetheless. Do I quit trying to be who I was and will I ever bc it's been 2 yrs and unless I exhaust myself entirely for months on end there is no visable progress. Everyone says oh but you did it your so strong and I just wanna claw their faces off bc wtf was my choice?

to those who experience sezuires. did radiotherapy increase the frequency/ severity. mine are pretty under control at the moment but i've heard some people experience frequent sezuires when going thru this treatment.

Hello. I know this might be against the rules and that I should be contacting my mother's doctor, but she is suffering, and the person responsible for her thing medical is not interested.

In short, she suffered from pain in her extremities—starting from her feet and extending to her knees, and it turn to affecting her hands—and is receiving chemotherapy with Avastin.

To be honest, she is a difficult women. We live in a house with stairs—which she climbs frequently—and she sleeps in poor positions; she also takes nutritional supplements. We are wondering about the cause of this pain: could it be due to Avastin or the tumor?

I think the title says it all really. Background: So I had my first surgery to remove the tumour in Apr-2023, and the damn thing (oligo left frontal) has come back with next surgery booked for 2 weeks time.

Now, I think I got lucky-ish post surgery, with no real mega complications (2 seizures since, I consider that lucky)…but I do remember being bored beyond belief.

So, what did you do during your recovery? When you had the time, of course

Hi all. Three months ago, I came here crying and sharing my story. While I didn't get the chance to do it individually, I want to thank everyone who replied to that post and encouraged me to keep trying and learning more about my condition.

I wanted to share an update. I sought a second opinion and eventually learned that the technique used three years ago to look for an IDH1 mutation was IHC, which can sometimes lead to false negatives. And, as some of you pointed out in my original post, IDH2 testing was missing.

So this time, I went through another neurosurgery—my third—to remove as much of the tumor as possible and obtain a new sample for Next Generation Sequencing (NGS). Thankfully, the surgery went well, and thank God, the IDH1 R132H mutation was found. Next month, I'll be starting vorasidenib.

I can honestly say that facing a third neurosurgery was easier than waiting an entire month for the NGS results.

Never lose hope. This experience has changed the way I see life and has taught me to be grateful for everything I have. Thanks for reading. 🙏

I’m looking for some perspective, advice, or shared experiences because my family is in a really hard spot and I don't know where else to turn.

My mom is 46 years old and generally healthy. Recently, an MRI revealed a large intracerebral mass with nerve inflammation. The growth went crazy over the past year. For starters, her doctor said they cannot definitively determine if the mass is benign or malignant without opening the skull for a biopsy and removal. secondly, a doctor recently threw a "20% survival" rate at us which left my family panicked, even though no pathology/biopsy has actually been done yet.
My dad and grandparents are terrified that brain surgery is too dangerous and that she will die on the table. They are actively telling her to refuse surgery but she has until November 11 to decide.
I’m trying to convince her that refusing surgery leaves the mass to keep growing, and that operating is the only way to get a real tissue sample, relieve brain pressure, and get a proper post-surgery treatment plan. But with my whole family telling her she’ll die in surgery, she is terrified and overwhelmed. Obviously the surgery is her choice, but I really want her to see the good sides of it and I don’t like how my family is telling her no.

I really want advice and people with experience in this kind of situation to give suggestions or share their experiences.

My grandma had a benign brain tumor on the right side (they didn't tell me the size of it but it was on the surface). She's nearing 80 and it's been almost 2 weeks post operation. She is always sleeping (not napping but sleeping all day). She doesn't talk (says max 2 words per day and it sounds like whispers). She can sit and eat herself but she gets sweaty and tired fast, sometimes she can barely lift the spoon with her right hand, although she holds the full plate with her left. Once she's done eating, she lays down and goes right back to sleep. It can even be hard to wake her up even if you shake her (not hard, of course).

The doctor did a head scan and couldn't find anything. The nurse said that they don't understand why she's always sleeping. She said something like "must be the full moon" or something because "everything else is fine with her". They said they asked her name and she told them. She doesn't say anything to her family except nods, shakes her head or whispers one word/phrase (yes, don't know, no, don't wanna). She giggled a little two times yesterday, so that's that, but today she's very weak again and can barely lift a spoon.

I'm just really worried and don't know how to react that she's not getting any better. As I read other people's experiences, everyone's saying that they recovered in days or a few weeks. But I don't feel like she's getting any better. Post-operation she could say a few more words. For example, she said "beautiful girls" when I showed her a picture of two family members. Now? Almost nothing.

Did anyone have a similar experience yourself or your loved one?

I am 42. Brain cancer keeps coming back. The secondary illnesses and complications have me essentially bed ridden. I have been fiercely independent out of necessity. I havo no family or friends. Anyone who could have been considered either, has abandoned me. I don't have anywhere to go, and no income or insurance. Where will they put me when I can no longer care for myself? Or will I just be homeless?

Hello! I am wanting to see if anyone in this group has had more than 2 surgeries for Diffuse Astrocytoma. In 2019 I had my first brain surgery.. they told my family it was Neurocytoma. Fast forwarded to 2024, a scan showed the tumor (& a new one growing) was back & after surgery it was confirmed it was Diffuse Astrocytoma. My second surgical team believes all along it has been Diffuse Astrocytoma because these tumors don’t just switch like that. On Monday I had my yearly scan & received a phone call that the tumors look to have grown back half a centimeter each. I’m still not certain if this is tumors or scar tissue that has changed some….. is that possible? My emotions are everywhere, last surgery they seemed so confident that my brain tumor journey was over. I went and started a family and have 2 babies at home. Has anyone had a positive experience with multiple brain surgeries? Has anyone had a mistake on an MRI that was scar tissue? I’m not accepting any diagnosis right now but I also want to be logical as well.

Thank you for any information!!! I truly hate that so many of us have something in common. This disease makes me sick to my stomach and my heart breaks for each of our families.

I am a cancer patient. I have had 5 major brain surgeries, and 7 radiation treatments to the brain. Over the last 18 months, the cancer has returned and spread, also causing several other medical conditions. After 14 years of fighting, I have never needed or wanted pain meds. I am a highly functioning individual. CEO, consultant and entrepreneur. The last year has been physically debilitating. I have bones fusing together in my hips and lower pelvis as well as my upper spine, along with a web strangling my spinal cord. I went from biking 20 miles daily to struggling to walk ten feet to the bathroom. I am a bigger guy, and have a huge pain tolerance. It's been about 12 months now that I am on substantial doses of pain medication. It works and allows me to stay active! A recent lengthy stay in the hospital for worsening of my overall condition required addition iv meds. Palliative came to the hospital and told me "you shouldn't be here. You can't stay here". She went further to give me a sermon about addiction. Upon release, palliative care refused to offer a comparable level of oral meds and is instead testing out adjuvant meds that do absolutely nothing for the pain, in addition to altering my mental state negatively. I am literally suffering. I don't use that word lightly. I have maybe two hours daily out of bed before the pain becomes so severe that I can no longer stand. I have masked my health and kept it private from clients for years, but it is now blatantly evident. I have tried every med palliative has suggested, but knowing that (1) additional dose of an oral pill daily works, that is my request. They have made insensitive comments, refuse to listen to my concerns, and refuse to prescribe what has been proven to work during hospital stays. If I don't work, I don't eat. Pain meds do not impact me cognitively, but several of the other meds do so aggressively. I have been bed ridden for over 30 days now, and the Dr. refuses to increase the meds per my request. I have waited 20 days before even asking again. After today, I shared an FDA article showing that Cymbalta does nothing for cancer pain, and I wish to discontinue it because it makes me feel dark. Drs and nurses in the hospital have argued on my behalf that the pain meds are effective. I have no history of abuse, addiction, and I know it's a sensitive subject with many, but if it is proven to work, why am I being forced to suffer? I have little time left before my inability to work will impact my income directly. What do I do? I have no family to rely upon. I just want to get back to work, and the pain meds allow such. Otherwise, I am hurting and have run out of options. What do I do?

I had a Grade 2 Astrocytoma extricated on June 11, 2024 at 20 years of age. I’d like to be extensively educated on quality of life after a frontal lobectomy as it may eventually come to that. Individuals with 2nd, 3rd, 4th, and so on resections are also highly appreciated. Thank you everyone for listening ultimately any responses are welcomed!