Promising treatment gives fresh hope to patients with rare, deadly cancer

There is fresh hope for patients with a rare, deadly form of cancer most commonly found in younger adults.

Some Albertans are part of the fight for approval of a promising new treatment.

Golfing and planning visits with family and friends were not possible while Jennifer Nielsen was going through chemotherapy.

But that changed when she started a new treatment in September.

"You don't have those up-and-down swings with this drug, which is mentally as well as physically amazing," Nielsen said.

That drug—Pemigatinib, brand name Pemazyre—could become more widely available in Canada.

"I'm happy to see the government moving forward," Nielsen said.

It treats cholangiocarcinoma—bile duct cancer.

The Canadian Drug Agency previously decided not to recommend Pemazyre but is reconsidering and wants to hear from patients and doctors by Dec. 13.

"It gives them hope, and that's what they like about Pemazyre—it gives them hope," said Brenda Clayton with Cholangio-Hepatocellular Carcinoma Canada.

Clayton's family has been fighting for people with this rare cancer since her oldest daughter died of the disease after her first treatment ended and no other options were available.

"It's one of the cancers that doesn't have a first-line targeted therapy, and so, really, that has to change," she said.

Patients who need another option but can't get it survive an average of five months.

After CTV did a story with a new dad in need of another treatment, Alberta agreed to cover the roughly $15,000 a month of Pemazyre on a case-by-case basis.

That's how Nielsen got approval.

She hopes sharing her experience will give many more people the same chance.

"There is work being done in Europe and the United States with this, and Canada needs to get along the same lines and access so that patients have options," she said.

"You need something in the future for your hope."

Advocates expect the Canadian Drug Agency will make its decision on the treatment in March.

Anyone who wants to share their story with bile duct cancer can reach out to Clayton’s advocacy group.