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.

Just Posted

A tenant walks in front of her home on Boundary Road on Friday, June 18, 2021 after it was destroyed by fire the night before in Chilliwack. (Jenna Hauck/ Chilliwack Progress)
Chilliwack family homeless after fire rips through house on Abbotsford border

Turtle rescued, no one seriously hurt following Boundary Road fire in Chilliwack

Wild rabbits are all over Chilliwack, but people often think they’re someone’s lost pet and try to ‘save’ them. But the owner of Chilliwack’s Reptile Room says good intentions can have bad consequences for wild animals. (Photo by THE CANADIAN PRESS)
Owner of Chilliwack’s Reptile Room asks people to leave wild animals in the wild

Amber Quiring says people who think they’re helping are actually doing more harm than good

Brandon Hobbs (turquoise shirt), brother of missing Abbotsford man Adam Hobbs, gathers with other family and friends to distribute posters in Chilliwack on Thursday, June 17, 2021. (Jenna Hauck/ Chilliwack Progress)
Search efforts expand to Chilliwack and beyond for missing Abbotsford man

Family, friends put up posters in Chilliwack, Agassiz, Hope for missing 22-year-old Adam Hobbs

A CH-149 Cormorant from 442 Transport and Rescue Squadron out of CFB Comox on a training exercise in Chilliwack on June 16, 2021. (William Snow photo)
VIDEO: Military search and rescue training in Chilliwack Wednesday

CH-149 Cormorant and CC-115 Buffalo from CFB Comox participated in downed aircraft rescue simulation

Stock photo by LEEROY Agency from Pixabay
Drop-in vaccination clinics slated in Abbotsford for construction workers

Among three sites in Lower Mainland holding no-appointment clinics in June and July

People line up to get their COVID-19 vaccine at a vaccination centre, Thursday, June 10, 2021 in Montreal. THE CANADIAN PRESS/Ryan Remiorz
Vaccines, low COVID case counts increase Father’s Day hope, but risk is still there

Expert says people will have to do their own risk calculus before popping in on Papa

Thousands of protesters make their way through the downtown core during a Black Lives Matter protest in Ottawa, Friday June 5, 2020. THE CANADIAN PRESS/Adrian Wyld
MPs’ study of systemic racism in policing concludes RCMP needs new model

Chair of the House public safety committee says it’s time for a reckoning on ‘quasi-military’ structure

A case filled with packages of boneless chicken breasts is shown in a grocery store Sunday, May 10, 2020, in southeast Denver. THE CANADIAN PRESS/AP-David Zalubowski
One million chickens euthanized during labour dispute at Quebec slaughterhouse

Premier says waste amounts to 13 per cent of the province’s chicken production thrown in the garbage

Premier of Manitoba Brian Pallister speaks at a news conference at the Manitoba Legislative Building in Winnipeg on Wednesday, April 7, 2021. THE CANADIAN PRESS/David Lipnowski
Provincial leaders want more federal money for health care, plan to meet in fall

Premiers ask Ottawa to increase its share of overall health spending to 35 per cent from 22 per cent

A section of the eastern slopes of the Canadian Rockies is seen west of Cochrane, Alta., Thursday, June 17, 2021. A joint federal-provincial review has denied an application for an open-pit coal mine in Alberta’s Rocky Mountains, saying its impacts on the environment and Indigenous rights aren’t worth the economic benefits it would bring. THE CANADIAN PRESS/Jeff McIntosh
Panel says Grassy Mountain coal mine in Alberta Rockies not in public interest

Public hearings on the project in southern Alberta’s Crowsnest Pass region were held last fall

An old growth cedar stands in a cut-block within the Caycuse Valley. More than 100 prominent Canadians, have signed an open letter calling for the immediate protection of all remaining old-growth forests in B.C. (Submitted)
Brian Mulroney and Greta Thunberg among 100 celebrities pushing to save B.C. old growth

List includes Indigenous leaders, scientists, authors, Oscar winners

The border crossing into the United States is seen during the COVID-19 pandemic in Lacolle, Que. on Friday, February 12, 2021. THE CANADIAN PRESS/Paul Chiasson
U.S. border restrictions to remain in place until at least July 21

Safety minister says Canada, U.S. extending restrictions on non-essential international travel

Helen Austin performing with Trent Freeman at the 2018 Vancouver Island MusicFest. Austin is one of the many performers listed for the 2021 event.
Vancouver Island MusicFest goes virtual for 2021

Black Press to stream 25 hours of programming July 9-11

Most Read