White Coat, Black Art

'I'm taking my life back': This Ontario man is defying the odds of incurable brain cancer

Denis Raymond has the same aggressive and incurable brain cancer that killed Tragically Hip frontman Gord Downie, but so far he is defying the grim odds of survival.

Denis Raymond, 32, credits longevity with glioblastoma to clinical trial

Denis Raymond, 32, was diagnosed with glioblastoma maligne, an aggressive form of brain cancer, in 2013. The average period of survival following diagnosis is about 14 months. (Dr. Brian Goldman/CBC)

Denis Raymond has the same aggressive and incurable brain cancer that killed Tragically Hip frontman Gord Downie, but so far he is defying the grim odds of survival.

Doctors told him he likely wouldn't live beyond a year with the invasive tumour.

That was in 2013.

Now, the Ottawa-born man recently completed his master's degree, which he put on hold for treatment, and plans to help Indigenous youth in Northwest Territories as a social worker.

"I'm taking my life back," the 32-year-old said.

'Life-ending' diagnosis

Raymond was diagnosed with glioblastoma multiforme in May 2013, which he deemed "life-ending."

Glioblastoma is the most common form of malignant brain tumours in adults aged 45 to 70, and has one of the poorest survival rates of any cancer, according to the Canadian Cancer Society.

About 1,500 Canadians are diagnosed each year and only about eight per cent of those patients survive five years or longer. The average period of survival following diagnosis is about 14 months.

At the hospital, an MRI scan revealed a seven-centimetre tumour lodged in Raymond's right frontal lobe.

"To give you an idea, it's the size of an orange or baseball," he told White Coat, Black Art host Dr. Brian Goldman.

Raymond had surgery to remove the tumour, followed by chemotherapy and radiation. He's pictured here with his sister, Andrée Ryan, centre. (Submitted by Denis Raymond)

Thirty-six hours later, he underwent surgery to remove it. Still, his chances of survival were bleak as he faced the daunting task of undergoing chemotherapy and radiation.

"You reach out and you try to find some hope out there and, of course, every hopeful story that you land on ends with a little line that says, 'so-and-so passed away,'" Raymond said. 

Age can have 'dramatic effect on survival'

Glioblastoma spreads quickly and is difficult to treat because as the tumour grows, it sends out finger-like tentacles that worm their way into surrounding brain tissue. The exact cause of the disease is unknown.

Dr. James Perry, the neuro-oncologist who treated Downie, explained that surgery may remove the bulk of a tumour, but often there are areas of the brain that can't safely be accessed.

Those more remote regions may harbour residual cancer cells that can spark recurrence, he noted.

Dr. James Perry is the head of neurology at Sunnybrook Health Sciences Centre in Toronto. He has treated hundreds of glioblastoma patients, including Gord Downie. (Aaron Vincent Elkaim/Canadian Press)

While Raymond was diagnosed at age 26, this form of cancer is not unheard of in younger patients.

Age can have a "dramatic effect on survival," Perry pointed out. 

Those between 20 and 44 have a 14 per cent chance of living past the five-year mark, according to the Canadian Cancer Society — nearly double the rate. 

Experimental treatment

While working as an outdoor educator in Ottawa with low-income teens, Raymond underwent traditional treatment, but also participated in a clinical trial.

"It was an opportunity for the kids to see somebody actively working towards getting better and to see that, you know, it's not necessarily a death sentence," he said.

Raymond credits a medical device, called Optune, with helping him survive years beyond his diagnosis.

"I think it was a huge, huge factor, if we want to call me still being here a success."

Raymond wore Optune, a medical device that emits an electrical current to fight the growth of glioblastoma in the brain, 18 hours a day for 2 ½ years. (Submitted by Denis Raymond)

The device is housed in a nine-kilogram backpack that the patient wears 18 hours a day. It emits a low-intensity electromagnetic current that passes into the brain through electrodes attached directly to a bare scalp.

The current generates an electrical frequency, dubbed a "tumour-treating field," around the glioblastoma to stop or slow cancer cells from dividing, according to a study in the Journal of the American Medical Association.

Raymond was outfitted with the device for 2 ½ years — six months longer than recommended.

"My life was totally flipped upside down because of this thing."

'Random genetic lottery'

The experimental treatment was the subject of a study, published in 2017, which demonstrated a small breakthrough in a type of cancer that has seen few.

The clinical trial of 695 people across Canada and the U.S. found the average survival rate of patients who used Optune was close to 21 months after entering the study. However, the device only improved longevity by five months compared with those who received standard treatment. 

The method is not a cure, Perry contends, because "it's just not a curable disease" and tumours always recur.

"Most of us, if asked, 'why him?' would say this is the random genetic lottery, that his tumour happens to be composed of cells that are more sensitive to radiation and chemotherapy," he said of Raymond.

Perry has treated hundreds of patients with glioblastoma at Toronto's Sunnybrook Health Sciences Centre and maintains that Optune "is a very controversial treatment."

All of the other treatments have failed us, so we're really looking towards new, novel therapies.- Dr. James Perry

A placebo control was not in place for half the participants, he explained, as a means of measuring Optune's effectiveness.

"That's really the only way to be sure that the results that you're seeing are attributable to the device and not to something else that the patients are getting in some fashion."

As a result, Optune isn't licensed for use in Canada.

The lead researcher of the study, however, explained in a peer-reviewed journal that he decided not to include a sham device because he felt it "would not have been ethical or practical" to ask patients to wear a device due to the "burden" of its size.

The device also costs $20,000 US a month, rendering it inaccessible to most. 

Raymond recently got engaged to his longtime girlfriend, Sara Youbi. (Submitted by Denis Raymond)

Chemotherapy and radiation remain the main weapons in an oncologist's medical arsenal, Perry says.

"All of the other treatments have failed us, so we're really looking towards new, novel therapies."

Researchers continue to study the genetics of a glioblastoma, as well as trying to decipher what, if any, role neural stem cells may play in the development and recurrence of the cancer. Numerous pre-clinical investigations are also underway.

In the next decade, Perry says he's optimistic there will be more long-term survivors with brain cancer.

"I don't think there's going to be a major change in the statistics for glioblastoma. I hope that perhaps survivorship is twice as long as what it is now."

Downie's legacy in brain cancer community

To date, Raymond's survival rate is well beyond average.

He gets an MRI scan done every four months to monitor the recurrence of glioblastoma.

So far, the results continue to come back "stable" — showing no growth of the tumour — but Raymond says he fears his fight is far from over.

"I do still have to live with the fact — the idea — that one day, it's going to come back and one day, I will have to deal with it," he said.

Gord Downie, the Tragically Hip frontman revered for his Canadiana-laced lyrics, became the most high-profile example of how devastating glioblastoma can be. (CBC)

Raymond adds that he owes some of his success to Downie's legacy that built awareness around the hard-to-beat brain cancer.

Downie's fight and death drew reams of publicity, and put a spotlight on the formidable nature of the brain tumour.

"He's an inspiration and he'll continue to be an inspiration to me."

Written by Amara McLaughlin. Produced by Jeff Goodes.


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