Myeloma, Party Of Two: The Smoldering
Have you ever really thought about the differences between symptomatic myeloma and smoldering myeloma?
If you ask newly diagnosed patients about their symptomatic myeloma, you’ll likely hear stories with common themes – like “we’re hitting the myeloma hard,” and how the treatment was scheduled with a sense of urgency. This type of myeloma usually has patients and their specialists leaping into action in hopes of bringing a quick and lasting remission. Of course, symptomatic multiple myeloma is an active disease with serious symptoms and repercussions, and it calls for an immediate response.
That’s not the case with smoldering myeloma. Even the word ‘smoldering’ implies a suspended state, like burning embers waiting to catch fire.
I thought about this recently when I was watching the movie, Master and Commander: The Far Side of the World, based upon the novel by Patrick O'Brian. The story focuses on the lives of 19th century English sailors. The movie is action packed with tense and sometimes graphic drama, showing the perils of life at sea in a time of open hostilities with the French.
Can you imagine what the life of a sailor was really like at that time? It was undoubtedly dangerous, difficult work. There must have been periods of intense action. Without the tools and techniques of modern warfare, life at sea must have been very difficult.
However, that’s not what seized my attention on this day. I was imagining all the waiting they must have endured. I bet there were long periods of time where they were alone with their thoughts, having to keep focused on the task at hand. I wonder if they ever grew accustomed to it?
How often must they have waited out the dark night, eyes straining in the darkness as they stood at their post? Alert. On guard.
How many nights did they lie awake in their hammocks, with only the sound of the waves lapping upon the ship or the cry of an seagull to test their senses ... being vigilant, ready for whatever lurked out there in the vast unseen spaces around them? And these men were at sea for months, years even.
Sometimes I think that’s what smoldering myeloma is all about too. Waiting. Watching for the first signs of attack. Remaining vigilant in the dark.
Daniel, my husband, has been smoldering since 2012. In the beginning, we were like novices at sea for the first time. For the first few months, life was a whirlwind of questions. There was much to learn, and the diagnosis seemed at odds with the ‘watchful waiting’ standard of treatment. How odd to know the ‘enemy’ is at the gate, amassing its numbers, proliferating unabated. And yet you remain at your post. Waiting.
Instead of actively fighting Daniel’s cancer, we began our time to ‘wait’. With so much time on our hands, it was difficult not to imagine what lurked beneath the water or past the horizon. In time, however, the specialist’s visits and the routine lab work induced a rhythm, a work-song cadence that has become a part of our lives with smoldering myeloma.
We observed the more experienced sailors on the myeloma sea, and we gained knowledge that helped us work with Daniel’s specialist. We began to discern which questions to voice and which were best offered to the stars.
We learned that, for the Smoldering, patience is a hard-earned virtue.
We also came to understand the central truth: how we live on the calm waters is as important as how we react when the alarm sounds. Like all sailors, we practice the necessary drills. Daniel has annual MRIs, CT scans, and skeletal series that support his bi-monthly labs. He’s had two bone marrow aspirations and biopsies, and he has participated in a clinical trial for PVX-410, an immunotherapy vaccine for smoldering myeloma that The Beacon reported on in 2014.
We’ve learned to hope for the best and prepare for the worst. We have been drilling, practicing, and waiting for the ‘surprise attack’ for nearly four years.
There have been some close calls.
The lines of demarcation for diagnosis and guidance on how to treat smoldering disease have changed since Daniel and I first began his watchful, waiting shift. And, after much consideration, it became apparent to us that there wasn’t just one official handbook for all who smolder. In fact, in some ways we are in unchartered waters with his case.
Most days we feel the winds at our back, but like any sailor squinting, straining to see the unknown in the dark sky, Daniel questions every pain and sore spot. Most people hardly notice the aches and pains that always burn long and low for the Smoldering.
He’ll ask me to put my finger on his back and apply pressure. As I do so, he’ll say, “Um, a little to the left,” or “No, closer to my spine.” As he tries to evaluate the discomfort, I wonder if we’re sailing into a new diagnosis. Are those pain points from being an early forty-something, or are they lesions burrowing their way into his bones? The Smoldering know that the difference between seizing today and fighting tomorrow is a hazy line on the horizon.
Like 19th century sailors, we are patient, vigilant, and ready. Our lanterns burn brightly as we scan the waters for the action to come. We navigate by the stars above, and we pray for clear skies. We remain the Smoldering. On duty. Watchful. Waiting out the night.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks for the great description of "watchful waiting" with smoldering myeloma. I was diagnosed with smoldering multiple myeloma in January 2014, and with consultation, decided to enter a clinical trial in January 2016 for "high-risk" smoldering myeloma. I have no illusions that this is curative, and it is really "uncharted territory", with lots of questions unanswered about maintenance therapy after the trial ends, vs. back to watchful waiting. I feel some relief that I'm actively doing something, and hope that I am not doing more harm than good in the long run with possibly developing resistant clones of multiple myeloma early on in my journey. Anyway, I enjoy reading your columns!
Great column, Tabitha! You've hit on a wonderful analogy.
As a former (private, not commercial) pilot, we used to have a saying, "Flying is hours of boredom punctuated with minutes of abject terror." Sounds a lot like what your Sailors and Smolderers go through.
As you mentioned, I think the line between smoldering and symptomatic myeloma is blurring more and more. The clinical trials that treat smolderers are an example of that. I would not be surprised if in 10 years it is routine to start treating patients when they are "only" in the smoldering stage.
Mike
Bill, I know what you mean by being in uncharted territory with your smoldering myeloma. Waiting is never easy, and it's especially more difficult when the stakes are so high. Similarly, while we hoped that Dan's participation in the PVX410 clinical trial would prove to be curative, we also went into it with realistic expectations. Ultimately, we hoped that the research might one day help lead to saved lives, and that made it an easier decision to make. Plus, as you pointed out, it felt better in some ways to be doing something. Like you, we hoped that the decision was the right one and that he wouldn't be hurting his chances once it became time to treat. Wishing you lots of success with your trial! I'll be keeping my fingers crossed for you!
Mike, I love your quote! It strikes a really familiar chord with me. I agree that the lines between smoldering and symptomatic myeloma are becoming more and more blurred. It's strange to say, but in some ways I think that it's harder to know what to do with the smoldering choices than if someone is newly diagnosed. It truly is an issue of timing in a lot of ways, and no one knows how long the myeloma drugs will keep their myeloma at bay before they have to try new therapies. You hate to start the timer on the clock too soon, but the last thing you want is end organ damage, which could bring on a whole new set of problems. So, I guess we'll keep vigilant and keep learning and asking questions ... hopefully we (and the specialists) will know when the time is right to treat.
Thanks so much for your comments! Wishing you lots of good health!
Thanks, Tabitha, for the beautifully written column. I hope that you don't need to spring into any immediate action soon, but it is good that Daniel is being monitored so carefully too. Best wishes to both of you!
Tabitha,
Thank you for your column. So well written! It can also apply to those of us who have active disease either in remission wondering if/when we will relapse. Love the sailor comparison!! Keep up the wonderful writing!
Another great article, Tabitha! Your analogy is spot-on and, as is the case with most of your columns, I'm sure that many can relate to it. I hope that it brings comfort to the many others out there who are "waiting out the night" to know that they are not alone on their journey. Thanks so much for sharing. I enjoy your columns and always look forward to the next one.
Tabitha, what a wonderful way to express all the mixed feelings and emotions filled with questions that you and Daniel, and all other myeloma families, try to keep in perspective as myeloma is dealt with. Just knowing there are others in the same battle brings a sense of hope and comfort. I always enjoy your articles.
Thank you for this. I was also diagnosed in 2012 and am still in watchful waiting and wondering silently everyday what lies ahead. I will watch for future articles.
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