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 seriously damage your life. But better treatments and greater 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 might not know about multiple myeloma.

It is not bone cancer but can cause bone problems

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

Weakened bones are also common in people with multiple myeloma, so they need to be more careful in their daily life. Samantha Hines of Dacula, Georgia, learned she had the disease in 2018, after a visit to the chiropractor left her with 18 broken ribs. “When he cracked my back, it broke my rib cage,” says Hines, a 55-year-old security professional with the IRS.

She recently had surgery to repair a crushed vertebra, one of the small bones in her spine. “It could be from sneezing too hard, coughing too hard, or running.”

It doesn’t just happen in the elderly

Most people with this type of cancer find out they have it when they are 65 or older.

Hines was in her early fifties. And Jameca Barrett was only 26.

“It struck me at a time when most of my peers were building their careers,” says Barrett, now 44, living in Fairburn, Ga. “They were just about to build where they were going to be, and I had this opportunity in my life.”

Barrett believes her young age prevented her from being diagnosed earlier. She fell very ill twice – once with kidney failure, a complication of multiple myeloma – before ending up in the emergency room, where an imaging test spotted the cancer. “Even when they did the scan, even on the notes it said, ‘OK, we see multiple myeloma, but her age is against her having it,’” she said.

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

There is a racial divide

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

Experts are not sure of the exact reason. But Barrett sees barriers within the African American community that prevent more people from being diagnosed and treated.

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

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

A third hurdle 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 you’re not.

“I think we’re often the prey, if you trust a supplier and their word is the law,” Barrett says. “Sometimes I think our community either doesn’t understand the value of a second opinion or that they don’t realize that they have an opportunity to say, ‘You know, let me check it out. Because I always feel like there’s something wrong with me, and you tell me I’m fine. ”

When you do a blood test, she says, ask your doctor for the numbers and medical terms in the results. If you see a number increasing or decreasing over time, mention it and ask them to tell you more.

Multiple myeloma can affect mental health

Barrett helps lead a multiple myeloma support group in the Atlanta area, of which Hines is also a member. She knows several people with the disease who also suffer from depression and anxiety, especially those who have lost their independence or who have received treatments that have not worked.

“If you are in psychological pain, it also impacts the pain cycle,” she says. “So you go into this cycle where pain causes stress, stress causes pain, and sometimes it’s endless sometimes during this process.”

The disease can affect your identity and your abilities, Barrett says, because you may not be able to do everything you used to do, or you may need to rely more on other people for help. This is why it is important to seek mental health care if you feel that you are having difficulty.

She says it’s also important to think about whether you’re going into remission. This is when your symptoms are gone and tests cannot find any signs of cancer in your plasma cells, although there is no cure for the condition.

Barrett says that after at least a year in remission, some people mentally benefit from building a “newly defined self, with enthusiasm for who you have become and what you will 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 has had a few health issues since, “but I have been very blessed to have been without myeloma for so many years,” she says.

Hines, who is on treatment with her third chemotherapy drug, says the most common misconception about multiple myeloma is that it is a death sentence.

When she was diagnosed with stage III disease in 2018, an internet search revealed that her life expectancy was 2 years. “And I burst into tears,” she said. “I’m like, ‘I’m young, my son is in college, I have a to-do list. It is not enough time! I must live. ”

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

Hines revised her diet to live healthier with the disease. She eats more green vegetables and avoids sugar and meat. She also made a dream come true by launching a line of all-natural salad dressings.

She also gave her shoes a makeover by writing a message on their soles. “All of my shoes underneath have multiple F myeloma,” she says. “So when I go for a walk, I’m taking the myeloma out of my life all day. Even under the slippers in my bedroom… so when I hit the floor everyday, I pull it out of my life. I don’t bring it to the fore. I have cancer – it didn’t.

Sources

SOURCES:

Jameca Barrett, Fairburn, Georgia.

Samantha Hines, Dacula, Georgia.

Multiple Myeloma Research Foundation: “Prognosis”, “Understanding Multiple Myeloma”.

American Cancer Society: “Key Statistics on Multiple Myeloma,” “What is Multiple Myeloma?” “Survival Rates by Stage of Multiple Myeloma”, “Risk Factors for Multiple Myeloma”.

Updated: “Patient Education: Treating Multiple Myeloma (Beyond the Basics).”

National Cancer Institute: “Multiple Myeloma Awareness and African American Disparities”, “Plasma Cell”.

International Myeloma Foundation: “Do you have myeloma?” “What is multiple myeloma?” “Multiple Myeloma and African Americans – The Numbers”.


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