My journey with Multiple Myeloma began in March of 2020 when I woke up one morning with a soreness in my left rib cage. I am a mariner, and I naturally assumed I had pulled a muscle hauling on a line helping some of my colleagues tie up a barge the night before last.  But the soreness didn’t go away.  In fact,  6 weeks later, it hurt more than ever, and was making it difficult to do my job. Cranking the steering wheel on the older boats I drive was becoming a full- body effort. And the rest of my rib-cage was becoming sore; it felt like it was creaking like a rotten basket when I rolled over in bed. And now I was developing new pain in my shoulder blades and back. As a hard-working, active guy in his late ‘50s, of course my back was sore, but now it was sore in new places and weirdly worse. There was  no way Sylvia was going to put up with me talking my way around this- I had to get it checked out.

X-rays revealed a large fibrous tumour called a plasmacytoma on top of my left 8th rib. It reminded me of pictures of the central bulge of a spiral galaxy, seen edge on.  But the lack of tumour markers in my blood seemed to indicate it was non-malignant. Yay! That’s good, right?

 Once again my wife intervened. Sylvia insisted that they keep looking.

A curious remark by the attending physician looking at the x-rays of my ribs stuck in my head. She spoke about the plasmacytoma and said: “But it’s odd. There is nothing behind it”. More examination was scheduled, and  PET scans revealed that something had chewed right through that rib, and elsewhere my skeleton was riddled with what were described as a “plethora” of nearly centimetre-scale osteolytic lesions. More intense bloodwork led to the diagnosis of Kappa Free Light Chain Multiple Myeloma. Of course, I had never heard of  anything like that before.

A rogue line of plasma cells had emerged from my bone marrow which have a mutation that prevented them from going through apoptosis, the internally-regulated process of cell-death. The relative immortality of this cell line meant that they gradually had been proliferating in my bloodstream and were effectively starting to “crowd out” the other types of cells that normally exist in roughly stable proportions. If something wasnt done soon, I would be in for anemia, as my red blood cell counts dropped, hemophillia as my blood-clotting platelets dropped, and a variety of infections as my white blood cells and the other specialized imune cells became supressed.

But the really ugly part of all of this was these osteolitic lesions- the hundreds of tiny and not-so-tiny boreholes in various places in my skeleton, including those centimetre-scale excavations in my thoracic vertebrae and that big inch-long empty space where my 8th left rib had been severed and which had brought all of this to my attention in the first place.

One of the things these proliferating myeloma cells were doing was issuing bogus protein commands that were disrupting my body’s bone remodelling system. This, I learned, was the supremely elegant, beautifully-balanced process where specialized cells called osteoclasts are continually  breaking down bone and chemically communicating back and forth with other speciallised cells called osteoblasts, which use the freed-up minerals to rebuild new bone in countless of thousands of places in our bodies all the time. Now the myeloma cells were recruiting and activating osteoclasts and suppressing osteoblasts, effectively leading to my skeleton dissolving in tiny increments in thousands of places.

Luckily, I was young enough to be a candidate for an autologous stem-cell transplant. Briefly, and with some fine-grained inaccuracies, this means a five-month program of induction chemotherapy knocked down the myeloma cells enough that cleaned-up, myeloma -free stem cells could be harvested from my bone marrow in the fall of 2021. Then after a megadose of cytotoxic (cell-killing) chemotherapy effectively wiped out the remaining stem cells in my bone marrow, the marrow was re-seeded by my own cleaned up stem cells kept aside in a freezer. This would leave me, hopefully, with a blood system more-or-less purged of that  line of mutant plasma cells. 

I was happy and grateful to report that a year and a half  later it has more or less worked. In fact everything the amazing people at BC Cancer and at Vancouver General Hospital tried on me worked the first time. I was declared in remission in January of ‘22 and went back to work as soon as my strength and immune system built back up enough. 

 But remission does not mean cured.  The myeloma cells still exist within me, though they can be kept at bay for the time being with maintenance chemotherapy. 

In fact, by the summer of 2023, my free light chain counts had started to increase precipitously so that by August I was declared "out of remission". I had active cancer once again. Luckily, this now made me a candidate for a program of immunotherapy- the next generation of attack on this disease. I responded quickly to the weekly combo of the steroid dexamethazone, the immunotherapy drug isotuxinab and the chemotherapy carfilzomib and now , despite being a bit immunocompromised and weak from supressed red blood cell counts, I am back in full remission.

There are hundreds of thousands of Canadians in the same position as I am. In fact, it seems that most people have had a considerably rougher ride from multiple myeloma than I did, and ten more of us get diagnosed with this vicious little betrayal of our bodies’ own blood cell regulatory system every day.

I am hoping in the not too distant future we will actually  come up with a cure for multiple myeloma, and by extension, this might lead to effective treatments for many other types of cancers. It might look like a process similar to the Car-T therapy that is in early stages of development right now, where your own immune system is “trained” to identify and attack cancerous cells as they emerge. 

This is one of the most promising lines of investigation currently underway. But it is going to take a lot of work. The utterly marvelous and incredibly elegant cell-growth and regulatory systems that are at work on a molecular scale in our bodies all the time is immensely complex. Thousands of different incredibly complicated molecules are constantly at play in determining how the cells of our bodies function, and this means that learning how they work well enough to be able to intervene when something in those systems goes haywire is really difficult.   It’s been a process that only now is starting to get some serious traction over 70 years after Rosalind Fraklin, Francis Crick and Jim Watson collectively figured out the structure of human DNA.

So “more research is needed”.  As somebody whose life has been saved and whose skeleton is intact because of the work of thousands of previous researchers, going for a little 70 kilometre bike ride to raise money for this cause is more than fun, it's a privilege.