Prior to my diagnosis, I like most people, did not know anything about myeloma. In the fall of 2011, I started experiencing a variety of strange symptoms: low energy, shortness of breath when jogging, persistent nose bleeds, and a significant ear infection, which was unusual for me. I also developed thoracic back pain, which gradually intensified, spread to my ribs and was incredibly debilitating. I took longer than I should have before seeing my family doctor. Fortunately for me, my doctor was familiar with myeloma, and quickly ordered a SPEP and other blood tests. He then made an urgent referral to the cancer centre in Hamilton.

When I was diagnosed in January 2012, it had progressed to a Stage III myeloma, with moderate kidney damage. I also had significant eye damage from myeloma related to hyper viscosity in the blood. Lessons learned:

For myself, the diagnosis was in many ways a relief. I would now be able to do something to address the cause of all the strange symptoms I was experiencing. My hematologist immediately prescribed an induction therapy in preparation for a stem cell transplant, which took place in June 2012. It was very effective. I relapsed in 2015, and had a second transplant in early 2016, which was once again very effective. Today I am happy to say I am doing very well and in remission for the second time.

The day I was diagnosed, the nurse at the cancer centre kindly handed my wife Erika and I a copy of the Myeloma Canada “Multiple Myeloma Patient Handbook.” This was extremely valuable and we read it from beginning to end and visited the Myeloma Canada website for more information. 

On the website, we discovered there were two myeloma support groups in our area. Within three weeks we attended a support group meeting in Toronto. The group members were most welcoming, eager to share their experiences, and reassured me that I was getting the right treatment. Soon afterward, we attended a Myeloma Awareness Day at the cancer centre in London. The London support group often hosts these information sessions allowing patients and caregivers to get information and ask questions.

In March of 2012 we attended a Patient and Family Seminar conducted by the International Myeloma Foundation. Later that year, we also attended a Myeloma Canada InfoSession in Toronto, and the annual Myeloma Canada National Conference in Winnipeg. All these events were most helpful to us, in providing education, and the opportunity to meet and share experiences with other patients and caregivers. It was encouraging to see how most patients carry on living as vibrantly as they can, contributing to their communities, and enjoying their families, friends, and many activities. This is in large part due to major progress in medical treatment for myeloma that has occurred in recent years—we are so fortunate.

We soon became very involved with both support groups in Toronto and London. In the fall of 2012, I joined the Executive Team of the Toronto and District MM Support Group, and later became Co-Chair. 

In 2013, we also helped establish a new support group in Halton-Peel.  

I was fortunate to be involved in many Myeloma Canada initiatives. I have a strong interest in research and was lucky enough to be part of the Scientific Roundtable in 2013. Since then I have been involved in the Myeloma Canada Research Network, as a member of a team who prepared a submission for a substantial research grant. The Myeloma Canada Board asked me to recruit people for the Patient Advisory Council, and to initially chair it. I have participated in various Myeloma Canada advocacy committees and initiatives, support group leader events, all the National Conferences, and numerous Myeloma Canada Multiple Myeloma Marches. I am also a Lay Representative in the Canadian Cancer Trials Group. 

In addition to being a wonderful caregiver, Erika also took part in many of these events, has always offered a helping hand to the support groups and is very supportive of the various Myeloma Canada initiatives.

All this work and involvement have been highly meaningful. Perhaps the most meaningful interactions are the many one-on-one conversations with patients that allow us to listen with compassion, share experiences and provide encouragement.

We are honoured to be involved with one of the best cancer patient organizations in Canada in terms of education and support, myeloma awareness, treatment access advocacy, and its extensive national network of very dedicated researchers. 

The biggest benefit to us from all this involvement is the opportunity to meet the many amazing people within the myeloma community. This is truly inspiring. We are blessed to have so many kind, thoughtful, dedicated, and involved patients and caregivers in our community. Living with myeloma, as a patient or caregiver, can be most humbling, but can also bring out the very best in people.

David & Erika

To find a local support group in your area or for information on how to start one,

visit www.myeloma.ca , under "Find Support".