Things people with multiple myeloma want you to know

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Multiple myeloma is a rare type of blood cancer which affects less than 1% of Americans. Your life can affect you a lot. But better treatments and more awareness of the disease bring power and hope. And a diagnosis doesn’t mean you have to stop your life.

Here are some other things you may not know multiple myeloma.

It is not a bone cancer, but it can cause bone problems

Multiple myeloma affects plasma cells, white blood cells against infection that are a key part of your body’s defenses, or immune system. He cancer it begins in the bone marrow, the soft, fluffy tissue inside the bones blood cells they are done. This can cause problems such as 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 careful in their daily lives. Samantha Hines, of Dacula, GA, learned she had the disease in 2018, after a visit to the chiropractor caused 18 fractures on their ribs. “When he broke my back, he broke my rib cage,” says Hines, a 55-year-old IRS security professional.

She recently underwent surgery to fix a crushed vertebra, one of the small bones she had spine. “This could have come to sneeze too hard, Cough too hard or running “.

It doesn’t just happen in older people

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

Hines was about 50 years old. And Jameca Barrett was only 26 years old.

“It touched me at a time when most of my classmates were creating their careers,” says Barrett, who is now 44 and lives in Fairburn, GA. “They were about to build where they were going to be, and I had that opportunity in my life.”

Barrett believes her young age prevented her from being diagnosed earlier. He got very sick twice, once with kidney failure, a complication of multiple myeloma, before it ended up in the emergency room, where an imaging test detected the cancer. “Even when they did the scan, even in the notes, he said,‘ Okay, we see multiple myeloma, but her age argues against the fact that she has it, ’” she says.

His doctors were surprised for one reason: less than 1% of cases are under 35 years old

There is a racial gap

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

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

She says the high costs of health insurance, doctor visits and medicines they are a problem.

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

According to her, a third barrier for some people in the black community is reluctance to get one second opinion when the doctor tells you that you are healthy, but worries that you are not.

“I think we fall prey many times, if you trust a supplier and their word is law,” Barrett says. “Sometimes I think our community doesn’t understand the value of a second opinion or they don’t realize they have the option to say,‘ You know, let me check it out. Because I still feel that something is wrong and you tell me I’m fine. “

When you have a blood test, he says, ask your doctor about the numbers and medical conditions of the results. If you see that a certain number goes up or down over time, mention it and ask them to tell you more.

Multiple myeloma can affect mental health

Barrett helps lead a multiple myeloma support system in the Atlanta area, of which Hines is also a member. He meets several people with the disease who also have it depression i anxiety, especially those who have lost independence or have had treatments that do not work.

“If you are struggling psychologically, this affects the cycle of pain, too, “she says.” So do a cycle where the pain causes Stress, stress causes pain and sometimes has no interminability during this process “.

Illness can affect your identity and skills, 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. That’s why it’s important to get it mental health it matters if you feel like fighting.

He says it’s also important to do some reflection if it comes up remission. That was when the symptoms disappeared and tests could find no signs of cancer in the plasma cells, although there is no cure for the disease.

Barrett says that after at least a year of remission, some people mentally benefit from building “a newly defined self, excited about who you have become and what you will achieve next.”

No need to put your dreams on hold

After chemotherapy, a stem cell transplantation, and follow-up, Barrett has been in remission for 15 years. She has had some health issues since then, “but I have been very blessed to have been out of myeloma treatment for many years,” she says.

Hines, who is being treated with his third chemotherapy drug, says the most common misconception about multiple myeloma is that it is a death sentence.

When he was diagnosed with stage III disease in 2018, an internet search told him his life expectancy was 2 years. “And I started crying,” he says. “I’m like,‘ I’m young, my son is in college, I have a list of deposits. Not enough time! I have to live“.

That’s how she does it. An avid biker, he sold his motorcycle because of the risks to his bones. Now, he drives a more stable three-wheeled vehicle for fun. “I refuse to let the grass grow under my feet. I’m still riding with the wind in my face. “

Hines reviewed it diet to live healthier with the disease. Eat more greens and avoid sugar and meat. He has also fulfilled a dream by starting a dressing line for all-natural vinaigrette salads.

He also gave a makeover to his shoes, writing a message on the soles. “All my shoes, underneath, have‘ Multiple Myeloma F ’,” he says. “So when I walk, I step on the myeloma of my life all day. Even under the slippers in my bedroom … so when I touch the floor every day, I take it out of life. I don’t put it in my head. I have cancer, I don’t have it. “

Sources

SOURCES:

Jameca Barrett, Fairburn, GA.

Samantha Hines, Dacula, GA.

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

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

UptoDate: “Patient Education: Treatment of Multiple Myeloma (Beyond the Basics).”

National Cancer Institute: “Awareness of Multiple Myeloma 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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