A Northwest Lens On Myeloma: Treading Water
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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Mark's Photo For The Month
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.
Photo copyright © 2015 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
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Hi Mark,
I just wanted to thank you for writing such a clear and concise description of what it is like to be a patient with this disease. My myeloma is now in "remission" after an autologous stem cell transplant a year ago last December and ongoing daratumamab maintenance therapy. As you say, we are all treading water part of the time, anticipating the time when we will have to swim vigorously again in order to fight this dread disease. It is an apt metaphor.
Best, Tom
Thanks for taking the time to write these columns, Mark. It’s hard to hit a note that speaks to all of us myeloma victims. This really does. We can all identify with treading water. Just doing what’s necessary to stay alive and as healthy as possible. It’s very easy to get into pity party mode. I know I do. I have to remind myself that we are really blessed at this time in medical history to have all these treatments to keep us going – waiting for the cure.
Julia Munson
After 9 1/2 years of continuous treatment, I talked my oncologist in giving me a one month holiday. Not much but I will take it. My bone marrow needs a break. Maintenance does extract a toll.
Mark, your column was very timely for me as my son had just completed an ironman race in Wales and for support I sent him the following: Every hour, every mile is an investment of our time and energy. Invest in yourself and other people will invest themselves in you and that's why you are not travelling alone.T rue for the myeloma community who share their thoughts and experiences. Thank you.
Aloha Mark,
I can also really relate to this question of maintenance or not. After 3 years of maintenance I noticed that my free light chain levels weren't consistently moving when I took a one month break for travel. So my oncologist and I agreed to take a break.
I was able to go 15 months before my light chains started to get too high. Now I am back in treatment instead of maintenance. While I don't enjoy the treatment, I think that the time off from the drugs was worth it. As you also point out, who's to say that I wouldn't be in the same position even if I kept up the maintenance.
For me, it is the quality of my days, not the quantity. It's a scary stance to take for me, but I think it is the correct path for me to follow.
Good luck on your journey!
Carpe Diem!
Tom
Hi Mark,
I chose not to go on maintenance after my initial treatment, which included surgery, radiation therapy, and 4 cycles of induction therapy. No light chains and no measurable paraprotein at that point. 16 months later, my blood work looks good and there's still no sign of a return of the myeloma. I know that relapse will come, but in the meantime my life has been full, and I have been able to do the things I wanted to do with none of the toxic load, cognitive effects, etc. I chose what could be a risky route, but one that I hoped would give me the strength to go back into a period of more actively treating the myeloma with greater reserves. We will see. So I found your column very pertinent. I have not had a stem cell transplant by the way.
Great article and awesome photo, perfect for the topic you presented. It is definitely a hard decision to make. I've been on Revlimid for 10 years with no end in sight. I'm tolerating it pretty well still, so I'm not about to stop and take the chance for a relapse at this point. But who knows what I'll feel like in a few years if I haven't relapsed??
Thanks for the thoughtful column, and I hope that the drug regimen you are on is not too onerous. I think that since your myeloma is 'high risk,' you have an extra level of concern as to relapse. Truly we live in a new age of treatment for myeloma, and are pioneers for a longer survival than previous patients had. Just by a turn of events, of having a second cancer, I went off treatment, and am still off two years later, so I wouldn't assume that things will get worse for you. The photo is startling and I can only think that is it lucky that the duck could fly away from the edge of the waterfall!
Nice article. I am treading water too; I feel fine and I hope this situation continues for a long time. After my transplant in 2012, many doctors recommended to start maintenance with Revlimid and dex but I refused. I relapsed after just two years and that’s when I started treatment, Revlimid and dex, which keep the cancer at bay. Nobody knows for sure if maintenance is always necessary.
Dear Mark,
Thanks for the excellent article. I like the treading water concept. Thanks, too, for the great photograph of that calm duck in the midst of the rushing water.
Hello Mark,
Great article! Thank you, and wishing you good health.
AA
Thank you all for the kind comments. It makes me feel good to know my writing strikes a chord with my fellow patients.
Thanks, Mark. Another great column. It's always good to know I'm not alone with how I feel at times.