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Patients and supporters raise funds for a 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 multiple myeloma, a rare blood cancer, at the age of 64, he had two goals. Getting back to work and playing football again.

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Eight years later, Shepherd is working as a photonics researcher at the National Research Council. He played football in the Masters division until the start of the pandemic. Shepard, 72, believes that if he returned to the game, he probably would have been in the grandmasters 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. Multiple myeloma is caused by genetic “errors” in the DNA of plasma cells produced in the bone marrow, causing the cells to grow out of control.

Although there is no cure, life expectancy for cancer patients has more than doubled over the past 15 years.

“It was two to three years when I was diagnosed. Now it’s been eight years for me,” Shepard said.

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On Sunday, Shepherd will join Steps to a Cure. Ron He, near Britannia Beach, starts at 1pm at the Corvus Lakeside Center. The event is part of a Canada-wide effort to raise awareness and funding for research.

This is the first time the event has been held in person since the pandemic began. The local goal is for him to raise $70,000, with half of the proceeds going to Canadian Myeloma and half to Ottawa Hospital.

Myeloma is managed as a chronic disease, said Michelle Oana, Head of Development at Myeloma Canada.

“The outlook is more hopeful than it was five years ago,” she said. Now it’s a matter of quality of life. ”

For example, Shepard underwent a stem cell transplant in 2014 and was in remission until 2019.

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“The reality is that there is no cure and the disease progresses in cycles. Stem cell therapy was the standard of care. It went well for four years and then relapsed,” he said.

Frank Shepard.
Frank Shepard. Photo by Jean Rebaque /post media

Shepard is currently on a combination of three drugs that has kept his myeloma in remission so far. “Eventually, it may become ineffective. I hope there is another treatment that proves effective in the next period,” he said.

On average, 11 people are diagnosed every day in Canada, Oana said. It often takes him two or three visits to the doctor before he can get a diagnosis, which often happens after a serious event such as a fracture or major infection. Symptoms are vague. Fatigue is a common symptom. However, it is so common that it is rarely a red flag for doctors.

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Most people are diagnosed between the ages of 55 and 75, but some struggle to get diagnosed in their 30s or 40s, says Oana. As with many rare diseases, the availability of free treatment varies from state to state.

Myeloma is associated with an aura condition with the tongue twister name “monoclonal gammapathy of unknown significance” known as MGUS, which manifests as elevated proteins in the blood.

MGUS is not identified by routine blood tests. Many people with MGUS have no symptoms, but are routinely monitored if found in their blood.

Shepard considers himself lucky. A protein marker in his blood was discovered by a hematologist while he was being treated for another disease.

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“This is smoldering myeloma,” said Shepard, whose only symptom was fatigue. “When it becomes progressively more active, it begins to multiply and requires treatment. The disease can progress further before people realize that something is wrong.”

His wife Jean, co-chair of the Ottawa and Gatineau Myeloma Community Network support group, said at some point it would come back, and there is the question of what to do next.

“It’s the waiting game. We know it’s coming back. It’s just a matter of when it’s back,” she said. It’s deep inside your heart.”

Frank Shepard said it’s important to stay positive.

“One of the benefits of having cancer is that it’s easier to get clear in your mind what’s important in life,” he said. “I was racking my brain over what I couldn’t do. It’s much more important to focus on what can make a difference.”

He compares advancing the treatment of myeloma to playing football.

“We play against better teams. is important,” Sheppard said.

“We are working with all stakeholders to ensure maximum progress.”

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

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

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