Patients and supporters raise funds for rare blood cancer with no cure: multiple myeloma

Although rare, multiple myeloma is the second-most common form of blood cancer

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When Frank Shepherd was diagnosed with the rare blood cancer multiple myeloma at the age of 64, he had two goals: to return to work and to play soccer again.

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Eight years later, Shepherd is at work as a photonics researcher at the National Research Council. He played soccer right up until the beginning of the pandemic, in the masters division. At 72, Shepherd muses, if he were to return to the game he would probably be in the grand masters division.

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Although rare, multiple myeloma is the second-most common form of blood cancer. About 1,000 people in Ottawa-Gatineau have multiple myeloma, which develops when genetic “errors” occur in the DNA of the plasma cells produced in bone marrow, causing the cells to multiply uncontrollably.

There is no cure, but life expectancy for those with the cancer has more than doubled over the past 15 years.

“When I was diagnosed, it was two to three years. Now it’s been eight years for me,” Shepherd said. “I can do almost everything I want to do.”

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On Sunday, Shepherd will be among those at Steps to a Cure! which kicks off at 1 pm at the Ron Kolbus Lakeside Center near Britannia Beach. The event is part of a cross-Canada effort to raise awareness and funds for research.

This is the first time the event has been held in-person event since the pandemic began. The local goal is $70,000, with half of the funds raised to go the Myeloma Canada and half to The Ottawa Hospital.

Myeloma is managed as a chronic disease, said Michelle Oana, the director of development at Myeloma Canada.

“The outlook is more hopeful even than five years ago,” she said, “Years ago, it was about how to keep people alive. Now it’s about quality of life.”

Shepherd, for example, had a stem cell transfer in 2014, which put him into remission until 2019.

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“The reality is that we don’t have a cure and the disease goes in cycles. The stem cell treatment was the standard of care. It worked well for four years, then it relapsed,” he said.

Frank Shepherd.
Frank Shepherd. Photo by Jean Levac /Post media

Shepherd is now on a cocktail of three drugs, which has kept his myeloma in remission so far. “The probability is that it will eventually cease to be effective. I’m hoping there will be another proven treatment that will work for the next period,” he said.

On average, 11 people are diagnosed every day in Canada, Oana said. Often it takes two or three visits to a doctor to get diagnosed, and this often happens after a significant event like a bone fracture or a major infection. Symptoms are vague. Fatigue is a common symptom. But because it’s so common, it’s rarely a red flag to a physician.

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Most people are diagnosed between the ages of 55 and 75 — although some in their 30s or 40s struggle to get diagnosed, Oana said. As is the case for many rare diseases, accessing treatments without cost varies from province to province.

Myeloma is associated with a precursory condition with the tongue-twister name “moniclonal gammapathy of undetermined significance,” known as MGUS, which appears as an elevated protein in blood.

MGUS is not identified in routine blood tests. Many people with MGUS don’t have symptoms, although if it is found in their blood, they are routinely monitored, Oana said.

Shepherd considers himself lucky. The marker for the protein in his blood was found by a hematologist while he was being treated for another condition.

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“It’s a smoldering form of myeloma,” said Shepherd, whose only symptom was fatigue. “Gradually, when it becomes more active it starts to multiply and require treatment. The disease can progress much more before people realize there’s something wrong.”

At some point it will come back, and then the question what to do next, said his wife Jean, who is the is co-chair of the support group with the Ottawa and Gatineau Myeloma Community Network.

“It’s a waiting game. We know it will return. It’s just a matter of when it will return,” she said. “You live with it. It’s in the back of your mind all the time.”

Frank Shepherd said it’s important to remain positive.

“One of the benefits of having cancer is that it makes it easy to clarify in your mind what things are important in life,” he said. “I used to get all worked up about things I couldn’t do anything about. It’s much more important to focus on things where you can make a difference.”

He compares making progress in treating myeloma to playing soccer.

“We would play teams that were better. But we could beat teams that were better because they would argue with each other. The coaching is important to make the most of what you’ve got,” Shepherd said.

“We’re trying to work with all of the stakeholders to make the most progress.”

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