Lorelei Dalrymple was sick for four years, with no answers.
She said extreme fatigue and numbness made her look like a multiple sclerosis patient. But her bloodwork was normal. Yet the symptoms kept building.
“I couldn’t even work full-time, took a medical leave to see if that would help. And it just didn’t. It was just it was getting progressively worse,” she said. A complete 180 from the life she was living before.
“I was living a reasonably good life. I had a lot of fun, I was working full-time, raising my kids. I was 43 years old when this happened.”
Then, 15 years ago, she was diagnosed with multiple myeloma — cancer of the blood.
She was just 47 years old.
“Nobody wants to hear the word that they’ve got cancer. But it was an absolute relief to know this is what was going on, and that we could start making an action plan to see if we could make things better,” Dalrymple said.
It’s a rare disease.
“In Canada for this year, an expected one in 4,100 patients will be diagnosed with (multiple myeloma). Unfortunately, there’s no cure yet. So that means, again, sadly, that everybody diagnosed with the disease today would die,” said Dr. Sabine Mai, a professor with the department of physiology and pathophysiology at the University of Manitoba.
Right now, Mai said most live about eight years after being diagnosed with multiple myeloma.
But, after decades of research, she is one step closer to changing that.
A medical breakthrough: TeloView
Mai said the studies started with a question: “What is different between a normal cell and a tumor cell?”
From there — with lots of work, and millions of dollars in funding later — she found a way to identify patients at risk of developing multiple myeloma, or even relapsing.
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It’s called TeloView, and uses 3D imaging of telomeres which are a part of DNA that determines how long a cell lives for.
“(When) telomeres reach a critical length… then the cell will stop dividing,” she said. “A tumour cell will ignore that. They will go through what is called a ‘crisis,’ and they will activate two possible pathways to maintain even the shortest telomeres, and then the cells become immortal…they can divide forever.”
While it’s not a cure, tests show it means patients can be treated earlier, and consequently, live longer.
“Normally, if they are with aggressive disease, they will develop myeloma within one and a half to two years. If you treated them… 31 per cent of them did not progress for four years. So now if you could take only those that are at high risk, I’m sure the numbers would be much better,” she said.
Rolling TeloView out for clinical use
TeloView is currently up for approval in the United States by public-trade company Telo Genomics, of which Mai is a co-founder.
“The pathway for most of technology developers like us was to get it approved in the US first and presented and then go to Health Canada and get it approved,” said Dr. Sherif Louis, president of the company. “The U.S. market is definitely bigger, and it’s maybe easier to penetrate as well.”
Louis said the product is “clinically validated and available,” meaning it’s ready to go.
“We are at exciting times. It’s like living the dream,” he said. “It’s a new frontier of looking at the biology of a cell in the within the context of three-dimensional setting.”
He said the majority of technologies can’t do that, and there is a high demand in health markets for a product like this.
“We are actually driven by the need in the clinic when we when build our strategy. We focus on questions that need answers in the clinic. And it’s a much better strategy then when you develop a product and try to create the need for it,” Louis said.
“We even project… over 500,000 (TeloView) tests a year. Of course, that doesn’t happen in a day and night, but that’s the magnitude of demand for that one test as an example.”
Issues that stand in the way of it making its way into clinics, is approval processes and cost.
“These tests are not cheap tests. You know, they involve a lot of technology development,” he said. “They are not the $30 to $40 test. So, reimbursement is a key challenge to allow the vast majority of patients to be able to use this test.
“In Canada, we do not have this challenge much. Like once you do the uphill battle to get the test approved with Health Canada, usually the provinces will cover the test.”
Hope on the horizon
Dalrymple is grateful for, and astonished by, the development.
“I just think it’s absolutely amazing that, you know, (Mai) is going to be able to look at somebody’s individual DNA and be able to give prognosis, right?” she said. “It could really be a game-changer for them to know whether they should have treatment or not.”
She is hopeful it can help others like her.
“It’s just so cool to see all of these brilliant minds in one room together, talking about the disease that you’re living with. And I mean, 90 per cent goes over your head, but I don’t care. They understand it. I don’t need to understand it. I just need to know that they’re doing something about it.”
In the meantime, she lives with the cancer stabilized — not progressing, and with minimal side effects.
But she takes nothing for granted.
“When you’re told that you’ve got maybe three to five years… Each year is a milestone. And so you sort of celebrate it and you start looking at life very, very differently.”