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

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.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Victoria police are searching for a federal offender who is wanted Canada-wide after his statutory release was suspended. (Courtesy of Victoria Police Department)
Victoria police searching for federal offender wanted Canada-wide

Warrant issued after offender’s statutory release suspended

One person is dead after a camper van caught fire Thursday morning in Victoria's Beacon Hill Park. (Nina Grossman/News Staff)
One person dead after vehicle fire in Beacon Hill Park

Investigation into Victoria death in early stages

Protestors against old growth logging gather in front of the courthouse in Victoria on Thursday morning. (Don Denton/Black Press Media)
Fairy Creek protesters gather at Victoria courthouse

Logging company seeks injunction to remove blockades near its Port Renfrew operation

A recently finished $4.3-million taxiway extension at the Victoria International Airport (not pictured) is unusable because of a blind spot. (Black Press Media file photo)
Blind spot leaves Victoria airport’s new $4.3-million taxiway extension unusable

Solution has been put on hold by COVID-19 pandemic, says airport authority

Lansdowne Middle School.
(Black Press Media File Photo)
Health Minister Adrian Dix looks on as Dr. Bonnie Henry pauses for a moment as she gives her daily media briefing regarding COVID-19 for British Columbia in Victoria, B.C. THE CANADIAN PRESS/Jonathan Hayward
7 additional deaths and 542 new COVID-19 cases in B.C.

Provincial health officials reported 18 new COVID-19 cases linked to variants of concern

Anyone with information on any of these individuals is asked to call 1-800-222-TIPS (8477) or visit the website victoriacrimestoppers.ca for more information.
Greater Victoria Crime Stoppers wanted list for the week of March 2

Greater Victoria Crime Stoppers is seeking the public’s help in locating the… Continue reading

(Black Press Media file photo)
POLL: How’s your butter?

Recent reports have some Canadians giving a second look to one of… Continue reading

Some Canadians are finding butter harder than usual, resulting in an avalanche of social media controversy around #buttergate. (Brett Williams/The Observer)
#Buttergate: Concerns around hard butter hit small B.C. towns and beyond

Canadians find their butter was getting harder, blame palm oil in part one of this series

Construction takes place on Bamfield Main in early February 2021. (PHOTO COURTESY CTV NEWS)
Ongoing Bamfield roadwork unrelated to planned $30M fix

Construction by Mosaic unrelated to $30M upgrade ordered in wake of fatal bus crash

B.C. research reveals how pandemic has changed attitudes towards sex, health services

CDC survey shows that 35 per cent of people were worried about being judged

The Regional District of Nanaimo’s board is forwarding a motion on illegal dumping to the Association of Vancouver Island and Coastal Communities’ upcoming annual general meeting. (Kane Blake photo)
Island communities asked to join forces in seeking help fighting illegal dumping

RDN resolution to be forwarded to Association of Vancouver Island and Coastal Communities

Jobs Minister Ravi Kahlon speaks in the B.C. legislature, describing work underway to make a small business and tourism aid package less restrictive, Dec. 10, 2020. (Hansard TV)
B.C. extends deadline for tourism, small business COVID-19 grants

Business owners expect months more of lost revenues

Mid day at the Vancouver Port Intersection blockade on March 3, organized by the Braided Warriors. (Zoë Ducklow photo)
Anti-pipeline blockade at Vancouver intersection broken up by police

Demonstraters were demanding the release of a fellow anti-TMX protester

Most Read