Researchers say multiple myeloma patients are living longer

Here’s a ray of hope from the American Cancer Society (ACS): Its recently released annual Cancer Statistics report noted that the five-year relative cancer survival rate for U.S. patients is now 70%. For multiple myeloma patients, that rate has nearly doubled since the 1990s, from 32% to 62%!

So what does that mean?

The U.S. Centers for Disease Control and Prevention defines relative cancer survival as “the ratio of the observed all-cause survival in a group of individuals with cancer to the expected all-cause survival of a similar group of individuals who do not have cancer.” In other words, it’s a comparison between cancer patients and people without cancer, and the ACS report says that about six out of 10 people diagnosed with multiple myeloma will live at least five years after their diagnosis.

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If you’re newly diagnosed, you may look at that and say, “Five years? But that’s not long at all!” I would respond that “at least” does not mean “only.”

In May, I’ll hit the seven-year mark. At my quarterly oncology check-in last month, everything was still good. I’m still in stringent complete response, and haven’t had myeloma meds since 2022.

I’m a short-timer compared with some folks who’ve lived with myeloma for decades. Theirs are the stories I point to whenever I encounter a newly diagnosed patient in need of motivation.

The long-haulers

One of the first books I read after my diagnosis in 2019 was “A Lucky Life Interrupted” by former NBC anchor Tom Brokaw. That “interruption” happened in 2013 — and he turns 86 next month.

Then I came across the story of Kathy Giusti, co-founder, along with her twin sister, of the Multiple Myeloma Research Foundation. She was told she had only three years to live. Last week, she marked 30 years since that diagnosis!

Two years ago, I met another 30-year survivor at an International Myeloma Foundation (IMF) event in San Diego. At the time, Yelak Biru was the IMF’s president and CEO. Just last year, he was part of a steering committee for the CAR-T Vision Report, which urges better patient access to chimeric antigen receptor (CAR) T-cell therapy, a new type of immunotherapy that uses the body’s own immune system to target cancer cells.

Through the IMF, I’ve also met Michael and Robin Tuohy. Michael has been a patient for 25 years, and Robin is now the IMF’s vice president of patient support. And I cannot forget the “Myeloma Teacher,” Cindy Chmielewski, an online friend whom I was lucky to meet last year at a HealthTree Foundation event. A patient since 2008, Cindy is the curriculum director at HealthTree University.

These are people who are not just surviving, but doing what they can so the rest of us survive and live well.

A life sentence, but not necessarily a death sentence

I’m also encouraged by one other important statistic in the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program report. The myeloma death rate has been dropping steadily since the mid-90s, even though the rate of new cases climbed.

More people may be getting myeloma now than a few decades ago, but with so many new treatments available, it’s becoming more like a chronic but controllable disease.

If we can control it for long enough, we can get to that cure.

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