Dear cousins,
After a long period of ever worsening back pain, I was diagnosed with multiple myeloma at the end of December. This is a type of blood cancer caused by malignant plasma (white) cells in the bone marrow. It generally occurs only after age 60.
Multiple myeloma has a genetic factor and seems to run in some families, so you and your children may be at increased risk compared to the general population. This risk is low. Total new cases diagnosed annually is 5 in 100,000 people. So a total of 2,300 people/year in Canada, 230/year in Toronto.
There is currently no known cure for multiple myeloma, but there are a lot of treatment programs to control it and extend a patient's life.
I started a cancer treatment program on Jan 13 at Sunnybrook Cancer Centre with two types of chemotherapy and four other drugs. After 5-6 months, I will get a stem cell transplant to replace all the blood cells in my bone marrow, using stem cells extracted from my own blood. This is the best current treatment to provide a significant remission period.
Multiple myeloma can create a number of different problems. In my case, it was absorbing calcium from the bones, making them weak. The calcium also goes into the blood stream and puts stress on the kidneys.
I noticed back pain in October. My usual back remedies weren't working so I went to my GP in November. He put me on a high anti-inflammatory drug. This didn't help (and was actually the wrong thing to do. Myeloma generally puts stress on the kidneys and non-steroidal anti-inflammatory drugs, such as ibuprofen adds to the kidney stress).
My back got worse, went into my hip and I needed a cane to walk. A hip X-ray indicated a possible hip fracture, but the radiologist recommended I go to the ER for a more detailed image. At Sunnybrook hospital, a CAT scan showed bone lesions in the back and pelvic area. I spent 3 days in the hospital as one test led to another, and a week later they confirmed multiple myeloma.
My back continued to worsen, went into my other hip and for about two weeks I couldn't walk at all. Just this week I have seen some improvement and I can walk around the house with a cane. But my bones are very weak and I am at risk of incurring a fracture. So I am getting some radiation therapy to the hip area.
I think my case could have been diagnosed sooner. A year and a half ago I saw my GP about constipation. High blood calcium is a cause and can easily be detected with a blood test. However, GPs generally start with an approach that covers 95% of cases. My doctor recommended more fibre in the diet and Metamucil. I questioned him on this after my diagnosis. He said calcium blood tests are not included in general checkups and are not paid by Ontario medicare. He also noted that when he refers patients to bowel specialists, they generally don't do calcium blood tests either. The fact is that multiple myeloma is difficult to diagnose. My GP is around my age and has only seen four cases in his life. Younger doctors have probably never seen a case of multiple myeloma.
One lesson learned that may be useful to others is that if you experience bone pain (spine, ribs) insist on a CAT (or MRI) scan. Bone lesions seen on these images were key to getting the correct tests for a diagnosis.
However, myeloma has multiple presentations. One is anemia, rather than bone pain. I don't know what a good diagnostic path is for that case.
I don't have a specific prognosis for my case yet. Published survival rates vary quite a lot. For now, I am going with one of the better results, a survival rate of 90 percent after 3 years.
Overall I am getting excellent medical advice and care and I am pretty positive that I will do well.