As I enter my third year of maintenance therapy after experiencing very little change in my health the past couple years, I sometimes feel as though I’m just “treading water.”
While it’s often considered derogatory to say that someone is treading water, being able to swim in that way is actually a very important safety skill. A swimmer isn’t going to make any forward progress treading water, but they’re going to keep their head above water (i.e., not drown) long enough to catch their breath so they can continue a longer swim. Treading water also allows a person who gets stranded too far from shore to survive on their own while waiting for help to arrive.
When I was diagnosed with multiple myeloma, the purpose of initial treatment, and the measures of its success, were obvious. The same holds for the stem cell transplant that followed my induction therapy. In those instances, the energy and resources expended on treatment, and the toll the treatments took on my body, moved me forward by significantly reducing the number cancerous cells in my body.
The purpose and measures of success for maintenance therapy aren’t so obvious.
This is true not only for patients like me, who have no medical training. Maintenance also is a subject of discussion even among myeloma specialists. While maintenance is generally recommended by doctors in the United States, it remains unclear what its actual benefit is in terms of a patient’s overall survival. This allows doctors and patients to question the value and necessity of recommending maintenance therapy for all myeloma patients.
Just as there are many types of initial treatment available for multiple myeloma, there are a variety of options when tailoring maintenance theray to individual patient needs. It is truly remarkable that multiple myeloma patients have so many treatment choices available. It does, however, make it more difficult to decide what course of action to take because it often seems whatever path we choose may foreclose other options.
Whether to proceed with maintenance, and what type of maintenance to pursue, are particularly difficult decisions because the benefits seem so hard to quantify, and there is a natural desire to be free of treatment, even for a short period. If I simply think of maintenance as holding the status quo, it can seem like a waste of energy. However, when I understand the true importance of “treading water,” the case for maintenance therapy seems to me to be more compelling.
The main argument in favor of maintenance therapy is that studies consistently find it extends the remission patients experience while they are undergoing maintenance. The treatment reduces any residual disease that exists in patients and delays the time until the residual disease begins to multiply, causing relapse.
The costs of the treatment, aside from the financial expense, are the side effects and other possible harm caused by the long-term toxicity of the treatment. For me, the price includes the hours of driving to and from the infusion clinic three weeks per month; taking a handful of pills daily; and suffering the constant fatigue and occasional cognitive lapses. There also are real health risks associated with long-term maintenance, such as secondary cancers or heart damage, which can decrease rather than increase overall survival.
All this simply to stay in place.
I’m treading water with no movement forward. Or so it seems. If maintenance treatment doesn’t extend my overall survival, is there enough reason to endure the possible toxicity of treatment?
The problem, both from the scientific perspective and the patient’s perspective, is that it is so difficult to know with any certainty if the treatment is extending an individual patient’s survival. While some studies support this conclusion as a general proposition, as an individual it isn’t possible to know if the medications are effective or not.
If I don’t relapse, is it because I’m undergoing maintenance treatments? Might I also avoid relapse if I stop treatment? If I take a “drug holiday,” could I avoid relapse and the fatigue, neuropathy, and other side effects of the medications?
There is no way to answer these questions, so I have to decide if it is worth the risk of relapse to stop treatments.
Given the relatively mild side effects I’m experiencing and the fact that my high-risk myeloma remains at bay, I’ve decided, with the support of my myeloma specialist, that the benefits of maintenance outweigh the cost.
I am hopeful that a relapse is very far in the future. Realistically, though, I must prepare for the possibility that it is just around the next bend. I need to be fully prepared for that and the toll it will take on me to deal with it. Like the swimmer treading water, right now I’m just resting, keeping myself healthy enough to be ready for another tough swim in the future.
I’m convinced that my current maintenance treatment gives me my best chance at sustaining this progression-free period of my life. That is important for many obvious reasons, but given my relatively young age and my commitments to my career and family, I want to spend this time with my head above water.
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Photo Credit: (c) 2014 Mark Pouley
A duck calmly sits on a log at the crest of Niagara Falls as the roaring water rushes by. This photo reminds me how important it is to be content holding on in one place while everything around me moves by quickly.
Lens on Myeloma 