Canadian initiative fuelled by Terry Fox’s dream may be only hope for young cancer patients

Young cancer patients in rural or remote areas did not always get the testing available

Seeing children suffering with cancer when he was being treated himself broke Terry Fox’s heart and inspired his Marathon of Hope.

Now, those efforts have fuelled a unique initiative to give kids and young adults across the country a chance to live when there are few, if any, treatment options left.

READ: Terry Fox’s story through the eyes of his younger brother, Darrell Fox

Eight-year-old Marlow Ploughman of Shannonville, Ont., has relapsed four times and is on a new drug thanks to genetic testing involving a project that brings together collaborators from over 30 pediatric cancer research and funding organizations.

The girl was diagnosed at age 2 1/2 with late-stage rhabdomyosarcoma, or cancer of the soft tissue, such as muscle, after a vine-like tumour was found in her calf, said her mother Tanya Boehm.

After three rounds of radiation, chemotherapy protocols and at least four clinical trials, there were no therapies left to try as the cancer spread to the girl’s neck and lungs.

A program called Terry Fox PROFYLE, short for Precision Oncology for Young People, seemed to be the only hope for Marlow, Boehm said.

PROFYLE provides precision treatment by sequencing tumour samples on a molecular level and analyzing the vast amount of information at any of three labs in Vancouver, Toronto and Montreal for patients up to age 29, regardless of where in Canada they live.

Until now, young cancer patients in rural or remote areas did not always get the testing available, let alone the collaboration of scientists and researchers from across the country to guide treatment.

“It presents options and time,” Boehm said. ”We were told with Marlow when the cancer came back the first time that she was going to die. … I think it’s fantastic that finally, families like ours have hope.”

Marlow’s oncologist and project leader, Dr. David Malkin of the Hospital for Sick Children in Toronto, said the focus of the five-year project is the approximately 20 per cent of pediatric cancer patients whose disease is considered hard to treat.

“Every pediatric centre across the country is part of PROFYLE and several of the adult centres will also be able to enrol their patients into the study. Even in the pilot phase we have had patients from all provinces now enrolled,” Malkin said.

About 40 people are participating in the study and about half of them have had their tumours sequenced because of the partnership that has so far provided $16.4 million, including $5 million from the Terry Fox Research Institute.

“One of the reasons that PROFYLE is so important is that the cancers that occur in young people are inherently different than they are in adults,” said Malkin.

“We need to be collecting much, much more information on the sequences of childhood and young adult tumours and personalize it and make it more precise so we can work with industry and pharma and develop ways that we can get these drugs for kids,” he said.

About 1,900 youth under age 18 are diagnosed with cancer every year in Canada, and about a third of them would be eligible for PROFYLE, he said, adding that only two other programs in the world come close to what PROFYLE offers.

“What is unique about PROFYLE is that it’s truly national.”

Patrick Sullivan, whose three-year-old son Finn died of rhabdomyosarcoma in 2008, has raised over $2 million for the BC Cancer Foundation and is on the executive committee of PROFYLE, for which he has committed another $250,000.

He said Finn, who was “introverted with a heavy streak of silly,” would have qualified for PROFYLE but the cost of molecular sequencing and analysis was far too high in 2008.

“It not only offers hope for families, which would have been enough for me, it offers a way to integrate this type of approach for kids, adolescents and young adults and for all Canadians,” he said.

Dr. Victor Ling, scientific director of the Terry Fox Research Institute in Vancouver, said Fox, who was diagnosed at age 18 and died four years later, would have qualified for PROFYLE.

“We did not know how to do DNA sequencing in those days, we did not have the drugs that we have now.”

Darryl Fox, Terry’s brother and a senior adviser at the Terry Fox Research Institute, said Terry was passionate about meeting young cancer patients, especially during the Marathon of Hope.

“We’re bringing not only children’s hospitals and fundraisers together but in 1980 he united a country. He brought Canadians together for a common cause and we continue to do that and this program is an example of that.”


@katslepian

katya.slepian@bpdigital.ca

Like us on Facebook and follow us on Twitter.

Just Posted

B.C. to move salmon farms out of coastal migration route

Broughton Archipelago plan set to start in spring of 2019

City of Campbell River transit to get some infrastructure help next year

Hint: It’s a bus pullout on Dogwood at Carihi and doubling the rate of bus shelter installation

Stranded B.C. trucker writes final wishes before being rescued 3 days later

‘I was just praying someone would come along’

Campbell River School District calls for report on buses and seat-belts

Parents have questions following expose on research around buses and safety

New wind warning for most of Vancouver Island

Forecasters are calling for strong winds up to 90km/h for some areas

REPLAY: B.C’s best video this week

In case you missed it, here’s a look at the replay-worth highlights from this week across the province

Canucks score 3 power-play goals in 4-2 win over Oilers

Vancouver sniper Boeser has 6 goals in last 5 games

Microscopic parasite found in Prince Rupert water affecting thousands

More than 12,000 residents affected by the boil water advisory issued Dec. 14

Trudeau lashes out at Conservatives over migration “misinformation”

Warning against the “dangers of populism,” Trudeau says using immigration as a wedge political issue puts Canada’s future at risk.

B.C. hockey coach creates ‘gear library’ to remove cost barrier of sport

Todd Hickling gathered donations and used gear to remove the cost barrier for kids to play hockey.

Canada’s ambassador meets with second detainee in China

Global Affairs says John McCallum, Canada’s ambassador to China, met with Spavor Sunday

‘They’re coming:’ Flying cars may appear in urban skies by 2023

Air taxis will number 15,000 and become a global market worth $32 billion by 2035

B.C. VIEWS: Andrew Wilkinson on taxes, ICBC and union changes

Opposition leader sees unpredictable year ahead in 2019

5 tips for self-care, mental wellness this holiday season

Ministry of Mental Health and Addictions urging British Columbians to prioritize self care through festive season

Most Read