Myeloma: An Unlikely Beacon in Cancer
The story of multiple myeloma, as seen from a macro level, is the best story in cancer today. The stories about myeloma, a rare cancer of plasma cells, provide fascinating insights into research, treatment, ideas, trends, expectations, and possibilities of cancer itself.
One year from now—from the time this sentence is read—at least 35,000 Americans will have been told they have multiple myeloma, a cancer of the plasma cells, to become part of the more than two million Americans with a type of cancer (and almost 17 million Americans living with cancer).
All they will know is that cancer is really bad, and they would gladly give some money or enter a run or golf tournament to help those who have it. Most won’t know much more than that.
Yet, few personal fears compare to getting cancer. Even more so for a loved one. Despite the progress made since President Nixon’s War on Cancer declaration in 1971, today more than 60% of Americans “perceived cancer as a death sentence.” To them, cancer is a monolithic disease with distant dreams of A cure.
But that doesn’t reflect the real world of cancer. Childhood leukemia survival rates have gone from two percent in the 1950s to more than ninety percent today. Smoking cessation laws and changes in habit had obvious effects on declining rates in many cancers. Take them out of the equation and it’s not so clear cut. Pancreatic cancer has gone from a four percent five-year survival rates to twelve percent in the past twenty-five years.
Myeloma is the unlikeliest example of progress in cancer. A rare cancer of the plasma cells, it attacks the immune system and weakens bones from the inside, causing a wide variety of potentially deadly systemic problems. The “multiple” part of the disease refers to the many places it can appear in the skeleton. A myeloma patient writing in 1992 cited the disease as “an always fatal form of cancer.” It remained a reliably deadly disease from when it was first identified in the mid 19th century until the advent of the 21st.
Myeloma is arguably the most consequential, illuminating story in cancer today. Even many myeloma specialists don’t grasp the revolutionary meaning of their collective stories; this is a rare era few in medicine ever dreamed of experiencing, a deeply informative and motivational story for all cancer patients, not just those with myeloma.
Mostly it’s just interesting. Some experts believe not dying of myeloma may well be reachable within the next decade. If you’re not sure about being here in the next decade, then your priority is surviving, and, in that case, statistics can become frustrating.
Imagine being told by a doctor that you have myeloma, a cancer of the plasma cells in bone marrow, and that it’s incurable. You—and your family and friends—will likely Google “multiple myeloma” or “myeloma” as soon as you get home, together with terms like “life expectancy” and “complications.” If more ambitious, some might even look into “clinical trials” or “support groups.”
Far too many people like you might click a link leading to grossly outdated incidence or survival statistics, scaring them unnecessarily with archaic facts: survival of three-to-five years, severe bone pain, fractures, horrible side effects from treatment. That’s the message many get. Others will cobble together bits of information from hospital and advocacy organization sites to realize it’s not necessarily the end of the world.
Fast forward to today. Myeloma is arguably THE “poster child” of promise in cancer research and treatment. Instead of the impending one-to-three-years before death sentences that were common for more than a century and a half, some specialty clinics claim five-years survival rates of higher than 90 percent.
Today more than half of newly diagnosed patients can reasonably expect at least ten years of survival and high quality of life, not bad considering the average patient is diagnosed at sixty-nine. Ten years survival doesn’t look so good for those diagnosed in their 20s to 50s. But the outlook is improving rapidly.
More drugs have been approved for myeloma than for any other disease, more than twenty in the past two decades. To compare, only two drugs were approved for Alzheimer’s Disease over the same period.
Once diagnosed, myeloma patients enter virtual relay races to reach for the next new treatments. Relapse is the norm for most. The longer it can be held off, the better. Moreover, pressure to use newer treatments with promising results sooner is accelerating at an unprecedented pace. Experts are openly talking about achieving a cure, a concept very few would say aloud just a few years ago.
Top experts believe making myeloma a treatable chronic disease is within reach. “Cure” is no longer a four-letter professional taboo. Indeed, in the next five-to-ten years myeloma may well be set to become international news.
That shouldn’t obscure the importance of becoming a “normal” chronic condition; reliable and repairing instead of uncertainty and impending decline. That’s a worthwhile and acceptable trade off if offered. But keep the goal of curing.
There is a race of sorts among many experts to be the first to claim that a patient or patients will be cured. This progress in myeloma might matter to many other cancer types, as Siddhartha Mukherjee cited in his sweeping “biography” of cancer, The Emperor of All Maladies, “More than nearly any other form of cancer, multiple myeloma…epitomizes the impact of...newly discovered targeted therapies.”
Written in 2010—not a word about immunology to be found in the book!—Mukherjee’s prediction has proven to be true over and over again. It will continue to be.
And that is what this Substack will be about. The stories of myeloma matter more than ever to an increasing audience – from patients to society.
Check into my future Substack articles to better understand why myeloma is one of the best stories in cancer today.
Topics will be wide-ranging and with little order, focusing on history, ideas, trends, and the personalities behind them. This won’t be full of breathless accounts about the latest studies or gossip, but instead, look into and behind the concepts driving research and treatment in myeloma and other cancers.
In the coming year, 35,000 Americans will not know much, if anything, about this myeloma that hit them, their families, and their friends. They arrive at a crossroads. The future looks foreboding.
This Substack is not designed to replace anything, but to better put it all into the context of individual lives. An understanding of history and concepts help prioritize; it potentially has, I believe, a therapeutic effect, one that clears the fog of information and decision-making.
Please share information about this Substack with others if you agree.
Photo: Detail, John Rogers Cox, Gray and Gold (1942), The Cleveland Museum of Art