11 every day, and more who may not yet know.
The City of Toronto has designated March 2023 as Multiple Myeloma Awareness Month!
On Wednesday, March 1st, the TORONTO sign will be lit up in RED at City Hall & Nathan Phillips Square in honour of Multiple Myeloma Awareness Month. To mark this occasion, I am using this as an opportunity to share some information about this pesky disease that has been part of my life for 11 long, roller coaster years, and to ask for your assistance in making the public in general, and family doctors in particular, become aware of the signs of Multiple Myeloma, or simply, myeloma.
Until I was diagnosed with it, I had not heard of myeloma. The first time I was told I had myeloma, I heard the term melanoma., which is a bit more familiar. Melanoma refers to the cancer of the skin. Myeloma, on the other hand, is a blood cancer associated with the abnormal growth of a type of white blood cell, the plasma cell. Plasma cells are found in the bone marrow and and are an important part of the body’s immune system because they produce antibodies. In myeloma, too many plasma cells are produced in the bone marrow and they crowd out and mess up the production of good, healthy red blood cells, white blood cells and platelets in the bone marrow. Myeloma does not show up as a lump or tumour. It just multiplies uncontrollably in the bone marrow. The reason the disease is called “Multiple Myeloma” is because it can affect several places in the body at the same time where the bone marrow is active. This includes the spine, skull, pelvis, rib cage, arms and legs, shoulders and hips.
Myeloma is not particularly well-known or familiar. It is also hard to diagnose because the symptoms can be associated with other illnesses. Sometimes I worry that many Canadians may not receive their diagnosis for months or even years because doctors don’t know what to look for or how to diagnose it. And yet, delays in a diagnosis can lead to poorer prognosis and more disease-related complications, which severely impact quality of life and longevity.
The symptoms of myeloma generally fall into four categories, collectively known as CRAB: Unusually elevated Calcium levels (“C”); high kidney markers (“R” for Renal); abnormally low hemoglobin, fatigue and weakness (“A” for Anemia); and bone pain and/or fractures (“B”). Myeloma patients are highly immunocompromised, which can result in frequent or recurring infections. There are approximately 8,000 people living with myeloma in Canada. Every day, 11 Canadians are diagnosed with myeloma. And yet, despite its growing prevalence, the cause of myeloma is unknown and there is no cure for myeloma as of yet. Treatment for myeloma is in the form of chemotherapy and stem cell transplant(s) for eligible patients. Typically, this will bring about some remission until the patient relapses and the myeloma makes its comeback.
There have been significant advancements in research and treatment leading to new therapies for this disease. This research has enabled patients like me who are impacted by myeloma to live better and longer lives than ever before. When I was diagnosed 11 years ago, the average duration of living with the disease (known as “PFS” – Progression Free Survival) was 2 – 2.5 years; today, it is approximately 6 years. Having been through multiple chemotherapy treatments and two stem-cell transplants, my current treatment includes immunotherapy, a newer treatment, that works by stimulating the body’s immune system to to recognize and eliminate myeloma cells. I get this treatment at The Princess Margaret Cancer Centre bi-weekly. Preliminary results show that this treatment is working incredibly well for me, beyond expectations. The plan is for me to continue on this treatment indefinitely (bi-weekly until June, then monthly thereafter), until the myeloma comes back, which is expected to happen in about 3 – 3.5 years. Once the myeloma relapses, I will likely be put on a clinical trial. A few of my friends who have relapsed many times are now going through a very exciting , state-of-the-art, costly CAR-T treatment. CAR-T is proving to be successful in curing patients with leukemia and lymphoma, but not yet for myeloma. CAR-T involves altering the DNA inside certain immune cells to help them attack the cancer.
To make this treatment, immune cells called T cells are taken from the person’s blood. The T cells are then frozen and sent to a lab, where they are genetically altered so they have specific receptors (called chimeric antigen receptors, or CARs) on their surface. These receptors help the T cells attach to proteins on cancer cells. The T cells are then multiplied in the lab, which typically takes a few weeks. Once the CAR-T cells are ready, the patient gets chemotherapy for a few days to help prepare the body. Then the CAR-T cells are infused back into the patient’s blood, where they can seek out the cancer cells and help the immune system attack them. If the researchers find a way to make this work, it may finally result in a cure for myeloma. That would be miraculous!
Now to my ask…
To mark Multiple Myeloma Awareness Month, I have a huge favour to ask. Below is a “layperson’s guide” to Multiple Myeloma. If every person reading this would print a copy of it and share it with their doctor, it would make a huge difference in catching this disease early and helping patient outcomes. This one-pager can quickly familiarize doctors with what to look for if they get a patient who might present with myeloma symptoms. You can make a significant difference in the life of many individuals!
Oh, and keep a look out for billboards on the 400-series highways, featuring photos of 11 people living with Multiple Myeloma (including moi):