Today, however, I’m still enjoying a complete response and relatively good health with remarkably few side effects. My perspective on the future also is much brighter, and three more years of good health doesn’t seem like a stretch anymore.
Much of my current success is due, I believe, to the aggressive maintenance treatment I have been receiving. This third anniversary is not only cause for celebration of 36 months of progression-free survival, but it also raises a decision about how to proceed.
A quick review of my history lays the groundwork for the decision I face this fall. I was diagnosed in 2015 with “high-risk” multiple myeloma due to the presence of the del(17p) chromosomal abnormality. I was initially treated with Velcade (bortezomib), Revlimid (lenalidomide), and dexamethasone, which proved ineffective. I moved on to Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dex (KPD), followed by an autologous stem cell transplant. At 60 days post-transplant, I had achieved a nearly complete response and had to decide whether and what maintenance therapy to undergo.
July 22 marked the third anniversary of my autologous (own) stem cell transplant. Honestly, although the treatment went well, when I was sent home, three-years in the future seemed like a very long time away. I wouldn’t have been surprised if a relapse had arrived before this day.
If I’ve learned one thing about multiple myeloma, it’s that it can be uniquely personal in the way it develops and affects a patient, but more so, how it will react to treatments. Maintenance therapy, it seems to me, can be even more of a gamble then initial treatments. If a patient responds well to initial treatment and a transplant, is there a reason to continue treatment to maintain that progress? This can be a tricky question, especially for standard-risk patients who did well after initial treatment. In a nutshell, all treatments come with risks. To undergo maintenance therapy, a patient must decide that the chance of achieving extended progression-free and possibly overall survival outweighs those risks.
There is data suggesting that maintenance therapy for “high-risk” patients like me can extend time without relapse, so following my transplant, my doctors recommended an aggressive maintenance therapy of a half-dose of the previous KPD treatment. This decision was based on research out of Baylor University that supported a triplet of medications for three years for high-risk patients.
During the first ten months after my transplant, my lab results showed a barely measurable amount of M-protein. After that, over two years now, there has been no measurable amount of cancer detected in my blood tests. By all standards, this is a great result and consistent with the best outcomes reported in the Baylor study. While there is no way to know if my current condition is because of the maintenance treatment, given all that has occurred in the last three years, I believe the decision to proceed with the aggressive maintenance therapy was correct.
Now that I’m approaching that three-year mark, I must decide what’s next. It’s easy to think that if the disease is being kept at bay and I’m not suffering many side effects, I shouldn’t change anything. Though my current results are all we could have hoped for, as I understand the research, there is little information about what benefits, if any, I might achieve by continuing this treatment beyond three years. There is, however, an ever-growing risk that the toxicity of the treatments will eventually be more than my body can handle, and that may open the door for more serious side effects or secondary cancers.
Since there is a lack of clear data about the clinical benefits of continuing this aggressive course of maintenance, I will decide based primarily on how the treatments impact my quality of life.
I’m convinced that Kyprolis is a myeloma-killing champion for me. Other than my transplant, it also has had the most significant impact on my quality of life. Kyprolis is administered by infusion. As an initial treatment, it required trips to the clinic on two consecutive days three weeks on, one week off. As maintenance treatment, the trips are cut to one day a week, but still three on, one off. For me, that means a two-hour roundtrip drive and anywhere from two to five hours at the clinic. Since starting Kyprolis in January 2016, that has been a lot of time on the road and in the clinic. Since my appointments are generally Friday or Saturday, it also means I can’t plan to travel or participate in an activity on many weekends because I have treatment.
My wife and I cope with this schedule because we understand it is necessary and because my getting better has become one of our jobs. We are used to the inconvenience in our schedules and our lives, but it would mean everything to retake this time from the disease.
Time, I have discovered, is more precious to me than anything else. Time with my family. Time with my grandchildren. Time to take pictures and enjoy the world I live in. Time to work on the projects that are priorities to me at work. Time is finite with our without myeloma, and making use of the time doing what I want to do, instead of sitting in traffic or in a clinic bed, is the ultimate improvement to my quality of life.
Based on the ever-increasing risk of toxicity, the lack of compelling evidence I would improve my chances of long-term survival, and the thought of even a short-term return to a more normal life, I have decided to drop the Kyprolis from my on-going treatment plan. On my doctor’s advice, I will continue the oral medications of Pomalyst and the dreaded dexamethasone. We will closely monitor my health and meet regularly with my specialist, ready to change course at the first sign of a relapse.
When I was first diagnosed, I looked at treatment as a way to avoid dying. On this anniversary, I celebrate the past success and look at maintenance therapy as a way to keep living my life.
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Photo Credit: (c) 2019 Mark Pouley
I celebrated my anniversary this year, as in the past, vacationing at our eastern Washington lake retreat. As always, it was splendid. When we’re at the lake, I spend early mornings on my boat looking for scenery and wildlife to photograph. This year a bald eagle let me get unusually close, and it stayed and posed for many great photos.