Marching for multiple myeloma
Oct. 17 event to raise funds for research chair
By Anthony Bonaparte
Eight years ago, at age 48, Aldo Del Col was diagnosed with multiple myeloma, a disease he knew nothing about. “Perhaps I heard of it in passing but I didn’t know what it was,” says the Beaconsfield resident. “So I had to do a lot of research and figure out what this disease is.”
Multiple myeloma is a cancer of the plasma cells, a type of white blood cell present in the bone marrow. Plasma cells normally make proteins called antibodies that help fight infections. In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher level. Since these cells usually make proteins, the level of abnormal proteins in the blood may also go up.
Multiple myeloma is the second most common blood cancer after non-Hodgkins lymphoma. According to 2008 Canadian Cancer Statistics, there were 2,100 new cases in Canada that year, representing 1.3 percent of all new cases of cancer. An estimated 1,350 people died from the disease that year — two percent of all cancer deaths.
To date there is no known cause — or cure — for this cancer but environmental factors are thought to contribute to the increasing incidence. Agricultural and petroleum workers, pulp and paper employees, cosmetologists and firefighters have a higher than average chance of developing the disease.
Ten years ago, the life expectancy of a myeloma patient was three to five years. But research, along with new treatments, has increased life expectancy to 10 years or more — which eventually means more sufferers. “Every person is different, but now that the survival curve has moved significantly to the right, and with more myeloma patients living longer, the population of course is increasing,” says Del Col.
“The average age when a person is diagnosed is in the early to mid 60s, and since we have a phenomenon of an aging population, inherent in that is a growing number of diagnoses for myeloma.”
Living with a disease that has no cure will affect people in different ways and Del Col decided to not only take it in stride, but do something constructive. Five years ago, along with another myeloma sufferer, John F. Lemieux, Del Col co-founded Myeloma Canada, the only national organization devoted to the myeloma community.
Myeloma Canada works with local patient support groups, the Scientific Advisory Board and several cancer organizations across Canada to promote education and advance research. “You’re given a situation and you can deal with it in two ways,” says Del Col, now 56.
“You can be negative, but I tend to be very positive and determined to do as much as I can to advance the cause for everyone.”
A pharmacist by training, Del Col later earned an MBA and worked in the pharmaceutical industry before his illness forced him to retire. He was recently appointed executive director of Myeloma Canada. “To get information out there we have a website and send out e-bulletins on a regular basis to share any relevant information with the community. It can range from new clinical trials, drug approvals to scientific findings, etc.,” he says.
“It’s a small community so it’s very difficult to make people aware that we’re there.”
To that end, Myeloma Montreal, the local support group, is mobilizing patients, caregivers, families and friends for the second annual Multiple Myeloma March to be held on Sunday, Oct. 17. The objective is to attract 500 participants for a five kilometre walk around the Lachine Canal and raise $100,000 toward the establishment of Quebec’s first Multiple Myeloma Research Chair at the University of Montreal/Maisonneuve Rosemont Hospital. The overall fundraising goal for the chair is $2 million.
“The research chair is important because it will focus efforts on myeloma, trying to figure out the science — why do people develop myeloma and what can be found to stop it,” he explains.
Del Col says the first march, which attracted 300 people, was a labour of love organized in a short time by a small group of people. “The march started last year with a couple of very determined women. There was about two months to organize it and our expectations were reasonable for a first year but we raised about $31,000 — much more than we had anticipated and with very little publicity and logistical support.”
This year, the organizing started much earlier and the goal is greater. “We’d love to have 1,000 people of course — the more the better.”
When he and I spoke, Del Col was battling a cold — which for him is no minor matter. “Whenever I catch a cold I get a bit concerned because our immune system is quite fragile.”
He’s already undergone a stem cell transplant and for the last five years has been taking regular doses of Revlimid (lenalidomide) with dexamethasone, a synthetic steroid with anti-inflammatory effects. “Not the kind used by bodybuilders, otherwise I’d look like the Incredible Hulk by now,” says Del Col with a laugh.
“It’s been keeping the disease under control. So you can appreciate how important new drugs are to myeloma patients — because if it wasn’t for these drugs I may not be speaking to you right now.”
For more information on the march, visit www.myelomamarch.ca. For Myeloma Canada, visit www.myelomacanada.ca