Anniversary and decision point

Celebrating the three-year anniversary of my stem cell transplant brings new choices about treatments and the possible improvement in my quality of life.


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.

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