I have a cancer, multiple myeloma, that effects the plasma cells in my blood. This December marks seven years since diagnosis. Somehow, a single plasma cell, which is a type of white blood cell, mutates and starts to multiply. The bone marrow acts as the blood cell factory and warehouse. When it gets crowded, the balance between healthy red, white, and platelet cells suffers.
The high concentration of plasma cells leads to complications. Low grade anemia is one. I have transient fatigue; it comes and goes. Also, plasma cells perform valuable tasks for one’s immune system and the malignant portion are unable to produce antibodies to fight germs. Hence, I am vulnerable to opportunistic infections. If I get a cold, it’s often a doozy.
Then, there are the drugs. The cumulative side effects of treatment are as troublesome as the disease. Early on, I underwent three distinct protocols of chemotherapy, culminating with a stem cell transplant. I lost my hair, which grew back; I developed numbness in my feet that has not improved; and it was a full year before my strength returned to normal. After that, I lived drug-free for 2 1/2 years.
Eventually, in spite of feeling well, a regimen of maintenance with target based therapy seemed prudent. One year later, we chose to enhance that therapy by adding the teeter totter experience of steroids to the mix. Two years farther along, when the maintenance drug lost its effectiveness, my doctor recommended a switch to one that aimed at a different target on the disease spectrum. Furthermore, the standard of care warranted the addition of a drug aimed at maintaining bone health.
As a cancer “veteran,” I’m what you would call a responder. Every drug I take works … for a while. I also tolerate them well. In essence, a patient attempts to “buy time” with these treatments. It’s a ludicrous concept really, because time is not a commodity. It cannot be owned or saved for later. Nonetheless, I’d probably be dead were it not for the chemo.
The drugs have not rid me of the cancer. They have, however, slowed its growth. That’s the goal with myeloma. My PFS, (progression free survival) compares with high end numbers on clinical trials associated with these drugs. If this were a game, you would want me on your fantasy team.
Multiple myeloma remains incurable, but in some patients it can be managed for a long time. Routine blood tests monitor the malignancy. I have blood drawn every three weeks. A complete blood count and chemistry panel determine if I can receive an injection of my targeted therapy. Another test measures the tumor burden in grams per deciliter. So, my doctor and I have data to help us determine when it’s time to try something new.
The chart above covers the last five years and paints a picture of the myeloma’s activity. Zero is normal and my current level remains lowish. That’s good and reflects well on the decision made last January to throw a curve at the disease. The upward trend, though, illustrates the patient, relentless modus operandi of this serial killer: it does not stop coming at you.
Dr. L and I adhere to the strategy that less is more. With quality of life in mind, we are working our way through the maintenance options, milking their effectiveness for as long as possible. Due to that and my age, I am averse to harsher chemo regimens, not to mention, another stem cell transplant.
In summary, my MM has an indolent personality. I’ve outlived the original prognosis. Yet, the disease is dogged in its determination to progress. I indulge in recommended treatments without regard for their toxicity: you do what you gotta do. I balance the somber world of cancer with the whimsical company of cats. And, I feel pretty good in spite of the fact that that graph line keeps climbing.