March has been declared Multiple Myeloma Month in BC following the efforts of an advocacy group in Abbotsford.
Multiple myeloma is a rare disease, despite being the second-most common form of blood cancer. It is often underdiagnosed due to its rarity and the complexity of treatment and testing.
The disease forms in the plasma cells in the bone marrow, and currently, there is no cure.
As the disease progresses, abnormal plasma cells build up in the bone marrow, leaving little room for healthy red blood cells.
Multiple myeloma is considered incurable because of the relapsing and remitting nature of the disease. Treatment can lead to remission for several years, but the disease is not eradicated from the bone marrow.
Even when treated, the side effects can be painful and life-altering. These include fatigue, low blood cell counts, nausea, vomiting, mouth sores, peripheral neuropathy, bone pain, infections, hair loss, and an increased risk of blood clots, depending on the treatment.
Stem cell treatment is another option. While generally effective, it "resets" the immune system, requiring patients to undergo childhood immunization shots again.
Another challenge faced by survivors is that multiple myeloma can go undiagnosed for long periods. Early warning symptoms, such as fatigue, bone pain, back pain, and general weakness, are often misidentified because they can be caused by a variety of other conditions.
Fortunately, the survival rate has increased from 25 per cent to 60 per cent in recent years, thanks to the development of new and more effective treatments.
Iris Stinson and Allison Hagreen have experienced the effects of the disease firsthand. Hagreen is undergoing treatment, while Stinson lost her son, Malcolm, to the disease. Malcolm completed 30 triathlons in 30 days to raise money for myeloma research.
“I still remember talking to the doctor when Malcolm had his stem cell transplant,” said Stinson. “He wanted to take his bike with him. The doctor said, ‘No, you can’t have your bike.’ Malcolm replied, ‘This is my treatment, and I want my bike.’ So, he took it, and he rode his bike every day during his stem cell transplant.”
Hagreen and Stinson were thrilled to hear that awareness of the disease is growing following the recent proclamation.
“It’s so well done,” said Stinson. “It covers everything. It informs people about multiple myeloma, especially those who don’t know anything about it, and highlights what’s being done in BC and across Canada. A lot of people don’t know that the Canadian Myeloma Association does excellent work.”
Hagreen and Stinson are also part of a local community support group for people affected by multiple myeloma. They told The Citizen that these groups are larger than people might think, despite the disease affecting only 1.8 per cent of the population.
“It’s like when you buy a red car, and suddenly every second car you see is red,” said Hagreen. “This is a rare disease, but it turns out there are quite a few of us. Our support group, which meets once a month, usually has about 10 people. We also have members in the north, covering areas like Terrace and Vanderhoof, so our group spans a wide area.”
Both Stinson and Hagreen have been deeply involved in raising awareness about the disease, participating in fundraisers, putting up posters, and organizing the Multiple Myeloma Walk in honour of Stinson’s son, which raised $33,000 for research.
More recently, Hagreen, Stinson, and fellow survivor Iris shared their stories in a video campaign to spread awareness.
Stinson and Hagreen encourage everyone to get tested by their doctors and to not ignore early warning signs, such as back pain, as these could be an early sign of the disease.
