Things People With Multiple Myeloma Wish You Knew

Multiple myeloma is a rare type of blood cancer that affects less than 1% of Americans. It can take a serious toll on your life. But better treatments and more awareness of the disease bring power and hope. And a diagnosis doesn’t mean you have to put your life on hold.

Here are a few other things you may not know about multiple myeloma.

It’s Not Bone Cancer But Can Cause Bone Problems

Multiple myeloma affects plasma cells, infection-fighting white blood cells that are a key part of your body’s defenses, or immune system. The cancer starts in your bone marrow, the soft, spongy tissue inside bones where blood cells are made. This can lead to problems like back and bone pain, tiredness, and repeated or long-lasting infections.

Weakened bones are also common in people with multiple myeloma, so they need to be more cautious in their everyday lives. Samantha Hines of Dacula, GA, learned that she had the disease in 2018, after a visit to the chiropractor caused 18 fractures in her ribs. “When he was cracking my back, it shattered my rib cage,” says Hines, a 55-year-old security professional with the IRS.

She recently had surgery to fix a crushed vertebra, one of the small bones in her spine. “That could’ve come from sneezing too hard, coughing too hard, or running.”

It Doesn’t Happen Only in Older People

Most people with this type of cancer learn that they have it when they’re 65 or older.

Hines was in her early 50s. And Jameca Barrett was only 26.

“It hit me at a time where most of my peers were creating their careers,” says Barrett, now 44 and living in Fairburn, GA. “They were just on the cusp of building where they were going to be, and I had this sever that opportunity in my life.”

Barrett feels that her young age kept her from getting diagnosed sooner. She became very ill twice — once with kidney failure, a complication of multiple myeloma — before she wound up in the emergency room, where an imaging test spotted the cancer. “Even when they performed the scan, even on the notes, it said, ‘OK, we see multiple myeloma, but her age argues against the fact that she has it,’” she says.

Her doctors were surprised for a reason: Less than 1% of cases are in people under 35

There’s a Racial Gap

Multiple myeloma is the most common type of blood cancer in African Americans, who are twice as likely to get it as white people. About 20% of people who have the disease are Black. One estimate predicts that by 2034, almost a quarter of new diagnoses will be in African Americans.

Experts aren’t sure of the exact reason. But Barrett sees obstacles within the African American community that keep more people from getting diagnosed and treated.

She says the high costs of health insurance, doctor visits, and medications are one problem.

“The second thing is just lack of knowledge,” she says. “It’s getting better now, but for so many years, there just wasn’t enough information for the patient to know what multiple myeloma is.”

A third barrier for some people in the Black community, she says, is reluctance to get a second opinion when your doctor tells you you’re healthy but you’re worried that you’re not.

“I think we fall prey a lot of times, if you have trust in a provider and their word is law,” Barrett says. “Sometimes, I think our community either doesn’t understand the value of a second opinion or they don’t realize they have the option to say, ‘You know, let me double check. Because I still feel there’s something wrong with me, and you’re telling me I’m OK.’”

When you get a blood test, she says, ask your doctor about the numbers and medical terms in the results. If you see a certain number go up or down over time, mention it and have them tell you more about it.

Multiple Myeloma Can Take a Toll on Mental Health

Barrett helps lead an Atlanta-area multiple myeloma support group, of which Hines is also a member. She knows several people with the disease who also have depression and anxiety, especially those who’ve lost their independence or had treatments that didn’t work.

“If you’re struggling psychologically, then that impacts the cycle of pain, as well,” she says. “So you get on this cycle where the pain causes stress, the stress causes pain, and it’s just never-ending sometimes during that process.”

The disease can affect your identity and abilities, Barrett says, because you might not be able to do everything you used to do or might need to rely more on other people for help. That’s why it’s important to get mental health care if you feel like you’re struggling.

She says it’s also important to do some reflecting if you reach remission. That’s when your symptoms are gone and tests can’t find signs of cancer in your plasma cells, although there’s no cure for the disease.

Barrett says that after at least a year of remission, some people benefit mentally from building “a newly defined self, with excitement for who you’ve become and what you’ll accomplish next.”

You Don’t Have to Put Your Dreams on Hold

After chemotherapy, a stem cell transplant, and follow-up care, Barrett has been in remission for 15 years. She’s had a few health issues since, “but I’ve been very blessed that I’ve been out of the treatment of myeloma for that many years,” she says.

Hines, who’s in treatment with her third chemotherapy drug, says the most common mistaken belief about multiple myeloma is that it’s a death sentence.

When she was diagnosed with stage III disease in 2018, an internet search told her that her life expectancy was 2 years. “And I just burst into tears,” she says. “I’m like, ‘I’m young, my son’s in college, I’ve got a bucket list. That’s not enough time! I’ve gotta live.’”

So she does. An avid biker, she sold her motorcycle because of the risks to her bones. Now, she drives a more stable three-wheeler for fun. “I refuse to let the grass grow under my feet. I’m still riding with the wind in my face.”

Hines overhauled her diet to live healthier with the disease. She eats more greens and avoids sugar and meat. She has also fulfilled a dream by starting a line of all-natural vinaigrette salad dressings.

She gave her shoes a makeover too, writing a message on their soles. “All of my shoes, underneath them, have ‘F Multiple Myeloma,’” she says. “So when I’m walking around, I’m walking myeloma out of my life all day. Even under my bedroom slippers … so when I hit the floor every day, I’m walking it out of my life. I don’t put it in the forefront. I have cancer — it does not have me.”