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Susan Collins

‘Hope is what sustains all multiple myeloma patients’ says grandmother and patient advocate

Susan Collins loves curling, spending time with family and friends, visiting her two young granddaughters, walking her dog Triscuit, and being in nature as much as possible. These may seem like normal activities – but for the past three years Collins has been battling multiple myeloma, an incurable cancer of the bone marrow.

“The diagnosis came as a bolt out of the blue,” said the Saint John, New Brunswick resident, recalling her shock as the doctor explained the disease was not curable.

“After giving me a few moments to digest that information he went on to say it was treatable… That moment is still pretty fresh in my memory.”

Between 2,000 and 3,000 Canadians are diagnosed with multiple myeloma each year – and only 40 per cent of patients are alive after five years, with many living just months after diagnosis.

Collins joined a multiple myeloma research study and began chemotherapy treatments just days after her diagnosis, then underwent an autologous stem cell transplantation followed by maintenance therapy.

“Research offers hope for a cure, and in a small way I feel I am making a contribution to unlocking the doors to a cure,” she said, noting current research projects – such as the newly funded TFRI pan-Canadian project Multiple Myeloma Molecular Monitoring (M4 study) – bring hope to those living with the disease.

Led by medical oncologist and professor at the University of New Brunswick Dr. Tony Reiman, the M4 team will work with more than 250 patients at multiple centres across Canada to advance the ability to characterize and monitor multiple myeloma in the blood and the bone marrow to better understand how current treatments work and develop new, more effective ones.

“I think the direction that the research is going is so positive because it’s targeted, and a more personalized approach to treating cancer,” said Collins. “Hope is what sustains all myeloma patients – for a better quality of life and survival until a time when doctors tell patients their myeloma is treatable and curable.”

Since completing her treatment, Collins has slowly gotten back to the activities she loves. She resumed curling in the winter, began a patient support group with Myeloma Canada (a partner with the M4 team), and this summer she hopes to play golf and spend as much time as possible at her “heavenly” cottage

“One of the hard parts of having this disease is that it’s restricted my ability to do as much as I’d like to do, but I’ve always felt that this is going to come out okay,” said Collins.

“It’s a struggle at times and I know the statistics, but I’m going to be on the other side of those stats – you have to live your life that way.”