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glioblastoma: 'this type of cancer isn't fair'

a university health network clinical trial is showing promise for people living with glioblastoma, an aggressive brain cancer.

by karen hawthorne

may 30 2023

7 minute read

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the survival rate for people with glioblastoma is 15-18 months

most drugs, including chemotherapy, can’t get to the brain because of the blood-brain barrier. getty

over four years ago, life changed dramatically for rebecca grundy. one minute she was hanging out on a friend’s couch in brampton, ont., and the next she woke up in a hospital on a stretcher in the hallway being told that she had just suffered from three grand mal seizures and was headed for a ct scan to see what was going on.

doctors found a mass on the front left lobe of her brain.

“it was a really anxiety-driven, scary experience,” says grundy, now 32 and an advocate for access to medication for cancer patients. she’s living with glioblastoma, a notoriously difficult to treat primary brain cancer. aggressive treatment started with surgical removal of as much of the tumour as possible, radiation and chemotherapy drugs, followed by mri scans every three months to monitor her brain health.

“this type of cancer is not fair,” she says. “you could eat all the right things, exercise, relax, meditate, yoga, take the treatments that the doctor has prescribed, relax and focus on yourself.”

most adults survive just 15 to 18 months after diagnosis

but the stark reality is that most adults survive only 15 to 18 months after a diagnosis because the tumour often recurs, and less than five per cent of patients live past five years.

some days, the mississauga, ont. woman has to lie down and nap. other days, she can get out on her bike for a bit or work in her vegetable garden. she has to make the moments count, she says, because the future is uncertain.

jessica soares of beeton, ont. knows that well. losing her husband paulo to glioblastoma when he was 39 left her looking for a way to keep fighting in his memory and channel her pain in a positive way. now she is an ambassador for the volunteer organization brain cancer canada .

“he was never going to give up,” she says of living with the disease. “you’re always on edge, you’re waiting for another seizure, and there is so much scan anxiety until you hear the word “stable” and you let go of that breath, and then you think you’ve got to go through this scan again in three months.”

she saw her husband struggle with memory loss and the ability to care for his basic needs.

“this cancer robs the person of who they are before it takes their body,” she says. “we always called it ‘the monster.’”

malignant brain tumours are the biggest cancer killer of adults under 40. glioblastoma is one of the deadliest forms, according to brain cancer canada , striking four out of every 100,000 people in canada, and accounting for 12 to 15 per cent of all intracranial tumours where the cells in an abnormal mass of tissue grow and multiply uncontrollably. glioblastoma captured the world’s attention in 2017 when it ended the life of iconic singer-songwriter gord downie of the tragically hip.

some patients like grundy feel they’ve been lucky compared to others, thanks to a responsiveness to treatment. she was able to resume her life and return to work as a lobbyist for a government relations agency. but last september, her routine mri showed the cancer had come back.

“that was obviously a really crippling moment for me,” she says of the news. she had another surgery in october and was also enrolled in a clinical trial for a treatment, but that didn’t work for her. then it was back to chemotherapy. now grundy is on long-term disability, sharing her story to support patients, caregivers and families through the brain tumour foundation of canada , an organization that established the brain tumour registry of canada in 2019 to collect data and support research. she lives with symptoms of fatigue and challenges with communication, planning and multitasking — and the uncertainty of her disease — while she waits for her next mri to see if she’s in the clear.

the last brain cancer breakthrough was in 2005

cancerous brain tumours are complex and treatment-resistant, despite decades of laboratory and clinical studies. in fact, the last brain cancer breakthrough was the introduction of the chemotherapy drug temozolomide in 2005. now, almost 20 years later, most drugs, including chemotherapy treatments still can’t enter the brain to target tumours because the brain has a protective barrier known as the blood-brain barrier.

but there’s hope in the work of neurosurgeons at the university health network (uhn) in toronto, who have developed a new therapy for patients with glioblastoma in a clinical trial. the results, published in the journal nature medicine , show early promise that the novel approach can eradicate the tumour in certain patients and prolong their life.

the team also found a new genetic signature within tumour samples that could help identify which glioblastoma patients are most likely to respond to treatment and shed some light on the mechanisms of glioblastoma resistance.

“glioblastoma is the most aggressive brain cancer that exists. it’s one of the most deadliest cancers of the body,” says dr. farshad nassiri, neurosurgery resident and scientist with the uhn krembil brain institute . he worked closely with lead author dr. gelareh zadeh, neurosurgeon and co-director of the krembil brain institute and senior scientist at princess margaret cancer centre.

he says that the path to diagnosis often begins with complaints of a neurological problem, symptoms that are often similar to a stroke.

“but when the imaging is done in the brain, instead of revealing a stroke, we see a mass that has a very characteristic appearance of looking like a glioblastoma. and then the journey begins for the patient in terms of their treatment, which generally includes surgery, followed by radiation and chemotherapy.”

unfortunately, even with aggressive intervention, he says the tumour typically recurs and there’s not an alternative course of treatment.

what about immunotherapy?

while immunotherapy has revolutionized the treatment of some cancers, working to turn off the cancer cells’ ability to halt the immune system so the body can fight back, it has not been effective in treating glioblastoma. this is partly because there are very few naturally-occurring immune cells that could attack the tumour cells in the first place, and the blood-brain barrier does not allow drugs that are given intravenously to reach the tumour in sufficient quantity to have an effect.

but this potential new therapy could change everything

injecting a virus into the tumour causes cell death

for the clinical trial, 49 patients from 15 different centres across canada and the u.s. received a biologically engineered virus that was injected directly into a tumour during brain surgery. this approach meant the therapy could bypass the blood-brain barrier roadblock to treatment. the virus directly causes cancer cell death, but also stimulates local immune activity that leaves the cancer cells more vulnerable to targeted immunotherapy, which was administered to patients intravenously every three weeks, starting one week after surgery.

nassiri says that for 10 per cent of patients in the trial, the tumours were shrinking on different scans by more than half, while 56 per cent of the patients had a clinical benefit, where the tumour either stayed the same or shrunk — all this “in a population where you would just expect the tumour to rapidly grow out of control.”

one patient’s tumour has completely disappeared

on average, patients survived 12-and-a-half months after they received the treatment in the clinical trial, which is six to eight months longer than the patients uhn treats every day.

“we’re close to doubling their longevity and their survival with this treatment,” he says.

in fact, one of the patients has been alive for 60 months after the treatment.

“he is a super-responder,” says nassiri. “we saw him and talked to him not too long ago. he’s doing very well. he has no tumour on his mri scan. it’s completely gone, and it has been gone for a very long time and he’s not on any treatment anymore. this is unchartered territory for us.”

it’s this kind of hope that patients, caregivers and families are looking for from research like this from uhn, says shannon lahaye, ceo of the brain tumour foundation of canada . “it’s hope for new or better treatments, hope for better quality of life, and quite honestly hope for a little more time with their loved ones.”

although grundy didn’t meet the criteria for this clinical trial, she is determined to stay hopeful. she got engaged last september and her wedding is booked for july 2024 in prince edward island at a golf course by the ocean.

her advice to others with a glioblastoma diagnosis is about taking time to enjoy life and trusting your gut.

“i think everybody has to trust their intuition,” she says. “and the more that you lean into that, the stronger it gets. and you have to guide yourself through this journey, because it’s a short life.”

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karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto as a freelancer, and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

glioblastoma: 'this type of cancer isn't fair'

a university health network clinical trial is showing promise for people living with glioblastoma, an aggressive brain cancer.

most adults survive just 15 to 18 months after diagnosis

diagnosed with glioblastoma at 47: 'a brain cancer diagnosis can bankrupt families'

bladder cancer has typically affected older people who smoke, but now it's showing up in younger non-smokers. and we don't know why.

the last brain cancer breakthrough was in 2005

what about immunotherapy?

injecting a virus into the tumour causes cell death

one patient’s tumour has completely disappeared

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glioblastoma: 'this type of cancer isn't fair'

a university health network clinical trial is showing promise for people living with glioblastoma, an aggressive brain cancer.

most adults survive just 15 to 18 months after diagnosis

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injecting a virus into the tumour causes cell death

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