What to Know About Living With Multiple Myeloma at a Young Age

Fifteen years ago, Yolanda Brunson-Sarrabo was in her thirties and thriving at her job in the fashion industry when a routine blood test came back abnormal. Her primary care doctor referred her to a hematologist. As Brunson-Sarrabo looked around the specialist’s waiting room, she noticed something.

“The patients were older. They had canes and walkers, or they were in wheelchairs,” she recalls. It began to dawn on Brunson-Sarrabo that the diagnosis she’d gotten wasn’t common in people her age.

She was right. The average age for a multiple myeloma diagnosis is 69, and more than 95 percent of people living with this form of incurable blood cancer are over 50. But, young people can also develop the condition, in which the body’s plasma cells become cancerous and grow out of control. Of the 35,000 people diagnosed each year, only 1,500 to 2,000 are in their thirties or forties.

Not only is multiple myeloma uncommon in younger people, it may not look the same. So, symptoms such as bone pain and fatigue may not be taken as seriously as they would be in older adults. Younger people with multiple myeloma also face entirely different challenges than people in their sixties and seventies: holding down a job, starting a family, finding childcare.

On the plus side, younger people with myeloma tend to have less severe symptoms. And, certain treatments may be more effective and last longer for them than for their older counterparts, which can mean a better shot long term. Also, younger patients who don’t have underlying conditions that are more common in older people, such as hypertension and diabetes, are better able to tolerate treatment.

Brunson-Sarrabo’s hematologist wanted her to start treatment right away, but she and her husband sought a second opinion. Her new doctor told her that she did not have full-blown multiple myeloma but smoldering multiple myeloma, a precancerous condition that can turn into cancer eventually. She didn’t need treatment right then, he said. Instead, she was put on a five-year “watch and wait” plan.

“I am a young, Black woman, and I did my research and found a doctor,” she recalls. “I learned that multiple myeloma is a condition that is twice as common and deadly for Black people. But, for a while, I didn’t need treatment.”

Each year, Brunson-Sarrabo had blood work done and a bone marrow biopsy — tests that could signal that the precancerous cells had turned into cancer. In 2013, when her multiple myeloma required treatment, Brunson-Sarrabo took several medications: lenalidomide (Revlimid) and bortezomib (Velcade) to treat the condition, and dexamethasone to help reduce the side effects of the other medications. A year later, Brunson-Sarrabo completed her treatment, and she is now in remission.

Why Younger People May Not Be Diagnosed Quickly

The symptoms of multiple myeloma vary tremendously. For some people, such as Brunson-Sarrabo, the first clue that something’s wrong is an abnormal routine blood test. For others, it may be fatigue and/or bone pain.

“When you are younger, multiple myeloma is not a diagnosis doctors think of, so it can be a revolving door before you get your diagnosis,” says Zhuoyan (Yan) Li, MD, the division chief of hematology at Greater Baltimore Medical Center in Towson, Maryland. “And, if you are diagnosed later, treatment is delayed.”

If a young person comes in complaining of bone pain, it might be dismissed as musculoskeletal pain, says Grace Suh, MD, medical director of the Northwestern Medicine Cancer Center Delnor in Geneva, Illinois. “A person may think they threw out their back or have a pinched nerve,” she says. “But, if the symptoms are not responding to an over-the-counter pain medication or are getting more severe, they should be looked into.”

Younger People May Be Treated Differently, Too

In Brunson-Sarrabo’s case, the hematologist she initially saw was correct about her having multiple myeloma. But, he didn’t realize that hers was smoldering multiple myeloma, which didn’t require immediate treatment. She’d decided that it was worth getting a second opinion and didn’t want to start treatment if she was feeling okay.

That’s why Brunson-Sarrabo says it’s important to have a clear discussion with your doctor about treatment. “I am not your typical patient, and I am very vocal,” she says. “If there is something that the doctor is telling me to do, I will ask, ‘Why are we doing it this way and not that way?’”

Because younger people with multiple myeloma tend to tolerate treatment better than older adults, a hematologist can offer a more tailored approach, one research review found. Still, treatment for younger adults has the same goal: to relieve symptoms, improve quality of life, and prolong survival.

One promising way to do that is through an autologous stem cell transplant, which uses a person’s own stem cells, rather than a donor’s. “For this type of transplant, we take out some of your own stem cells and then give high-dose chemotherapy,” says David Gottlieb, MD, a medical oncologist at Greater Baltimore Medical Center. “After chemotherapy, the stem cells are reinfused.”

Autologous stem cell transplants are “considered standard of care in young patients,” according to a review in Current Oncology. But, there are other options, too.

Doctors also use medicines known as immunomodulators and monoclonal antibodies to treat multiple myeloma. Again, younger people may have an advantage. “Younger patients can often tolerate a four-drug regimen better than older patients,” says Rumaisa Hameed, MD, a hematologist/oncologist at MedStar Southern Maryland Hospital Center in Clinton. “And, our research shows that a four-drug regimen is more effective than a three-drug regimen.”

Making Quality of Life a Priority

A multiple myeloma diagnosis can be especially difficult for younger people who are in the thick of starting a family or working hard to advance in a career — or both.

“A younger person may wonder, Why did I get cancer at this stage in my life, when all my friends are healthy?” says Dr. Hameed. “They can experience a lot of anxiety and depression.” To promote better mental well-being, she connects her patients with a social worker and encourages them to join a support group.

Reaching out to others with the same diagnosis helped Brunson-Sarrabo feel better. Then, in 2013, she began to advocate for people with multiple myeloma. Brunson-Sarrabo wrote Another Face … of Multiple Myeloma. And, she founded and runs Chronic Fitness, a coaching service that offers online fitness programs for people who want to stay fit but can’t be as active as they’d like.

Each person experiences multiple myeloma differently, Brunson-Sarrabo says, and at the time of diagnosis, everything will seem uncertain. “But, once that murkiness is over, sit down and dissect what the doctors are telling you,” she advises. “Get to know your medical team. And, use your intuition. If your doctor isn’t giving you answers, you don’t have to stay with them.”

With her energy and positive attitude, Brunson-Sarrabo has every reason to feel optimistic about the future.

“When you’re younger,” Dr. Li says, “chances are, age is on your side.”