Goulds man frustrated by what he says are limited cancer treatments in N.L.

Alfie Swain recalls a sombre conversation with his doctor in January. He was told his latest round of cancer treatments had stopped working.

"My doctor's exact words to me were, 'We're in trouble now,'" Swain told CBC News.

Swain, who lives in the Goulds area of St. John's, was diagnosed with multiple myeloma — a type of blood cancer — in August 2020, after discovering a tumour on his spine. 

Since that diagnosis, he's had a successful surgery to remove the tumour, and has undergone several rounds of different treatments designed to target the cancer. 

As Swain describes it, the results have been positive.

"When I go into remission, I live an active lifestyle. I hunt and I fish, and I do my own snow and my own grass," he said. "When I'm in remission, everyday life is good."

While the treatments have been effective for him, Swain, 56, says he could never be sure how long each one would last. 

"I have had stages of remission: two years, and the latest one I had was nine months," he said.

Most myeloma treatments available in N.L.

Dr. David Jones, a hematologist with Newfoundland and Labrador Health Services, says the reason there are so many treatments for myeloma, and the reason they vary in their efficacy, is actually two-fold. 

Firstly, multiple myeloma is the third or fourth most common cancer in Canada, meaning there's always ongoing research for finding new treatment options, and eventually a cure. 

The second reason is the nature of the myeloma cells themselves.

"Even though we call it one [cancer], there's many clones of the disease," Jones explained. 

"These are cells that live in your body, and in your bone marrow particularly. So certain cells will have mutations that make them more susceptible to one type of drug versus another drug."

Swain was most recently receiving bispecific T-cell engager therapy — or BiTE — which Jones described as "bad tinder" for myeloma. The BiTE antibody brings myeloma cells into closer proximity with T-cells, which are part of the body's natural immune system, killing off the cancer cells.

Unfortunately for Swain, now that the BiTE Therapy has stopped working, that means he's exhausted all the targeted multiple myeloma medications available in Newfoundland and Labrador.

What he's left with now are some tough decisions.

One option is to move to Ottawa for an allogeneic stem cell transplant. That treatment takes stem cells from a healthy person and places them into the myeloma patient. 

But Swain says moving would be a disruptive and expensive process.

"I'd have to sell my home, because rent up there is probably going to be three or four thousand dollars a month for a three-bedroom place," he said, adding that he would have to take both of his children out of post-secondary school to move to Ottawa with him and his wife.

His doctors also told him about a treatment available in Halifax, which would require regular travel back and forth, potentially every couple of weeks, to receive injections.

Swain says he has trouble understanding the rationale of having to fly thousands of kilometres to another province for what essentially boils down to getting a needle. 

"I can't see why, if it's just a needle or a drug, why they can't send it to Newfoundland. There are perfectly qualified doctors and nurses in that cancer centre [in St. John's]," he said. 

Jones, who is also the medical director of the cellular therapy and transplant program, says multiple myeloma patients in Newfoundland and Labrador have access to the majority of targeted treatments available across the country.

However, there are some exceptions. For example, he says he submitted a proposal to this province's health authority to bring the allogeneic treatment here.

"We did try to have an allogeneic program in the province, I did put forward a proposal, but it was not thought to be a good idea at the time by the powers at hand," Jones said, adding that setting up such a program locally would require a lot of resources. 

As for Swain having to travel to Nova Scotia for an injection, Jones believes that particular treatment is a research trial, as opposed to a nationally approved therapy, which is governed by different regulations and therefore not as simple as sending a medication here to be administered.

"You can't just say send me the drug and I'll give it, because it has to be given in that research centre of whoever the principal investigator is," he explained.

For the time being, Swain has started chemotherapy to keep his multiple myeloma in check, which Jones calls a "machine gun" approach to treating cancer that can lead to more side effects, versus a "sniper" treatment designed specifically to attack myeloma cells. 

Swain is also in regular contact with his doctors to keep an eye on any new medications or clinical trials on the horizon.

But even when new treatments are developed and approved for use in Canada, there's no guarantee if or when they'll be made available in Newfoundland and Labrador.

For Swain, whose quality of life could be significantly impacted by those decisions, that's a deeply frustrating situation to be in.

"I just can't understand why Newfoundland is always so left out. We're isolated out here on an island. We have a brand new cancer centre, qualified people, and we just can't get the help we need."

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