My Journey with Multiple Myeloma
It’s over 4 years since my diagnosis “you now have active Myeloma – it’s time for treatment”. I’d been monitored for the previous 15 years, after an unrelated trip to a haematologist who discovered the M-protein in my blood – quite lucky really, since otherwise the only symptom was being a bit tired, and the disease could have progressed much further before treatment. A lot of thoughts go through your head when you contemplate your future after such a message, and the uncertain outcome. But living in Ottawa was a lucky break. With an excellent program for treatment of Myeloma at the Ottawa Hospital, and with support of family, friends and colleagues, six months later I had gone through my induction chemotherapy and autologous bone marrow transplant (then the standard of care) and was on the mend. Within a year I was back at work, exercising and feeling good.
What did I learn along the way? I remember just after diagnosis going to my first support group meeting of what is now the Ottawa Gatineau Myeloma Community Network. I was a “deer in the headlights”, but everyone there looked “quite normal” and were “positive and supportive” – I was not alone, neither was my wife! I learned about the process for developing and approving new treatments (drug trials, immunotherapy, and others) and how patient participation with our medical teams is critical for generating sufficient statistical data to enable these trials and treatment options. This is critical for those of us living with Myeloma, as there is currently no cure for the disease. When relapse occurs, new treatment options are required as the existing ones become less effective. As a fellow patient summarized it – “research is what will keep me alive”.
Good progress IS being made, and the prognosis is getting better thanks to the research activities locally (through TOH and the Gatineau Hospital), nationally (Myeloma Canada actively supports education and research across the country– www.myelomacanada.ca ), and internationally (many studies cover international patient groups). But there’s lots more to do.
To help raise awareness, learn more about some of the research activities, sponsor participants at the walk (if you can), come and join our team in Ottawa on September 23rd and make myeloma matter.