CancerCare Manitoba joins research project that offers hope for kids with rare cancers

Great strides have been made in treating children's cancer, and 80 per cent of all cases are now successfully treated.

A new cross-Canada project is focused on finding treatments for the other 20 per cent.

"It's no longer appropriate to be saying 'just add more chemo, do more surgery, do more of this.' It is simply not working," said Dr. Geoff Cuvelier, a pediatric oncologist with CancerCare Manitoba.

"We have to begin to think outside of the box. This is exactly what PROFYLE is. It is thinking outside of the box to find new treatments for this 20 per cent who are not doing well."

PROFYLE stands for "precision oncology for young people." The multi-institution research and treatment project, which CancerCare Manitoba is part of, focuses on providing personalized care for children, adolescents and young adults — up to age 29 — with rare and difficult-to-treat cancers, giving patients who haven't had a positive outcome with conventional cancer treatment other options.

PROFYLE focuses on 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, regardless of where in Canada they live.

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

'She was such a rock star'

About 60 children under the age of 18 in Manitoba are diagnosed with cancer every year. The number of cases jumps to 200 for those up to 29 years old. Cuvelier says based on that figure, about 40 patients fall into the "rare and hard-to-treat" category every year.

Graham McBain's sister, Kendra, was one of them. She was diagnosed in 2007 with a rare form of cancer after she found a lump on her arm when she was 15.

"She had a similar cancer to Terry Fox. His was in his bones. Kendra's was in her muscles," McBain said.

"But she was such a rock star. She spearheaded a campaign to raise thousands of dollars to help other teens who were really struggling and not responding to treatment, just like herself. She died when she was 18."

Part of the wing in CancerCare Manitoba's pediatric oncology unit is now named "Kendra's Way."

Pooling expertise

PROFYLE gathers expertise from across the country, giving oncologists new options they may not have considered previously.

Experts in clinical oncology, genetics and basic science are networking as part of the project, which sees tissue re-biopsied to understand the molecular footprint that is driving a particular cancer.

Once that is understood, specialists come up with targeted treatments that can use new drugs, and that might not have been considered as options otherwise.

"We are talking about those who have a difficult diagnosis when they first present, those who have metastatic disease, those who are refractory to their initial chemotherapy, or those who relapse. These are the patients we are targeting with PROFYLE," said Cuvelier.

Manitoba is part of the expertise team for the research and treatment project. Cuvelier says experts in Manitoba are not only contributing, they're consulting with experts in other cities to help young patients here. He says the province is behind the initiative and the health-care system is responding.

"Operating rooms are willing to re-biopsy patients, surgeons are willing to re-biopsy patients, pathology departments are willing to store tissue in a way that we can molecularly characterize," he said.

"We have the full support of the health-care system and this is going to be the most important initiative in pediatric cancer in the next five years."

'A groundbreaking initiative'

McBain is hopeful.

"You have to be optimistic in any case, any situation, especially when it is a person so young. I think they are heading in the right direction," he said.

"I think the possibilities are endless and we have some of the best brains in the world attacking this disease right now. Collectively, Canada has always done well together and hopefully this project will be the same."

The CancerCare Manitoba Foundation is funding up to $1 million dollars over five years for the project.

In total, $16.4 million — raised by the Terry Fox Research Institute and the research and funding partners — is being committed across the country to molecularly profile the tumours of patients, no matter where they live in Canada.

"PROFYLE is such an important step forward in Manitoba and across this country," said Annitta Stenning, president and CEO of the CancerCare Manitoba Foundation.

"We want to be the generation that moves the needle to 100 per cent success rate for children and young adults with rare and hard-to-treat cancers. This is a groundbreaking initiative."