Multiple myeloma is a rare type of blood cancer that affects less than 1% of Americans. It can take a heavy toll on your life. But better treatments and greater awareness of the disease bring strength and hope. And diagnosis doesn’t mean you have to put your life on hold.
Here are some other things you may not know about multiple myeloma.
It’s not bone cancer, but it can cause bone problems
Multiple myeloma affects plasma cells, infection-fighting white blood cells, which are an essential part of your body’s defenses, or the immune system. Cancer starts in your bone marrow, the soft, spongy tissue in your bones where blood cells are made. This can lead to problems like 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, GA, learned that she suffered from the disease in 2018 after a visit to the chiropractor caused 18 broken ribs. “When he cracked my back, it broke my chest,” said Hines, a 55-year-old security expert with the IRS.
She recently had surgery to repair a bruised vertebra, one of the small bones in her spine. “It could be caused by sneezing too hard, coughing too hard, or running.”
This doesn’t just happen to the elderly
Most people with this type of cancer will find out they have it when they are 65 years of age or older.
Hines was in his early 50s. And Jameca Barrett was only 26 years old.
“It hit me at a time when most of my colleagues were building their careers,” says Barrett, now 44 and living in Fairburn, GA. “They were about to build where they would be and I had this chance in my life.”
Barrett feels that her young age prevented her from being diagnosed earlier. She got very sick twice – once with kidney failure, a complication of multiple myeloma – before ending up in the emergency room, where an imaging test found the cancer. “Even when they did the scan, the notes even said, ‘OK, we’re seeing multiple myeloma, but her age speaks against the fact that she has it,” she says.
Her doctors were surprised for one reason: Less than 1% of the cases involve people under the age of 35
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 white cancer as whites. About 20% of the people who have the disease are black. One estimate predicts that nearly a quarter of new diagnoses will be made in African Americans by 2034.
Experts are unsure of the exact reason. But Barrett sees barriers within the African American community that are preventing more people from being diagnosed and treated.
She says the high cost of health insurance, doctor visits, and medication are an issue.
“The second is just a lack of knowledge,” she says. “It’s getting better now, but for so many years there just hasn’t been enough information for the patient to know what multiple myeloma is.”
A third obstacle for some people in the black community, she says, is reluctance to seek a second opinion when your doctor tells you you are healthy but fear you are not.
“I think we often fall prey when you trust a vendor and their word is the law,” says Barrett. “Sometimes I think our community either doesn’t understand the value of a second opinion or doesn’t see the ability to say, ‘You know, let me double-check. Because I still feel like something is wrong with me and you are telling me that I am fine. ‘”
If you get a blood test, ask your doctor about the numbers and medical terms in the results. If you find that a particular number is rising or falling over time, mention it and let us tell you more about it.
Multiple myeloma can affect mental health
Barrett helps lead a multiple myeloma support group in the Atlanta area, which includes Hines. She knows several people with this disease who also suffer from depression and anxiety, especially those who have lost their independence or have had treatments that didn’t work.
“If you have mental health problems, it also affects the pain cycle,” she says. “So you get into this cycle where the pain causes stress, the stress causes pain, and sometimes it just never ends during that process.”
The illness can affect your identity and skills, Barrett says, because you may not be able to do everything you used to or have to rely more on other people for help. This is why it is important to get mental health care if you feel you are having problems.
She says it’s also important to do some thinking when you reach remission. Then your symptoms will be gone and tests cannot find any signs of cancer in your plasma cells, even though there is no cure for the disease.
Barrett says that after at least a year of remission, some people mentally benefit from “building a redefined self with excitement about who you have become and what you will achieve next.”
You don’t have to put your dreams on hold
After chemotherapy, stem cell transplant, and follow-up care, Barrett has been in remission for 15 years. She has had some health problems since then, “but I have been blessed not to have had myeloma treatment for so many years,” she says.
Hines, who is on 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 found her life expectancy to be 2 years. “And I burst into tears,” she says. “I’m like, ‘I’m young, my son is in college, I have a bucket list. This is not enough time! I have to live ‘”
So she does. As an avid biker, she sold her motorcycle because of the risks to her bones. Now she rides a more stable tricycle for fun. “I refuse to let the grass grow under my feet. I’m still driving with the wind in my face. “
Hines revised her diet to live healthier with the disease. She eats more vegetables and avoids sugar and meat. She also fulfilled a dream by launching a range of natural vinaigrette salad dressings.
She also gave her shoes a makeover and wrote a message on her soles. “All of my shoes underneath have ‘F Multiple Myeloma,'” she says. “So when I walk around, I leave myeloma out of my life all day. Even under my slippers in the bedroom. So if I hit the floor every day, I leave it out of my life. I’m not putting it in the foreground. I have cancer – I don’t have it. “
swell
SWELL:
Jameca Barrett, Fairburn, GA.
Samantha Hines, Dacula, GA.
Multiple Myeloma Research Foundation: “Prognosis”, “Understanding Multiple Myeloma”.
American Cancer Society: “Important Statistics About Multiple Myeloma”, “What Is Multiple Myeloma?” “Stage Survival Rates for Multiple Myeloma”, “Risk Factors for Multiple Myeloma”.
UptoDate: “Patient Education: Treating Multiple Myeloma (Beyond Basics).”
National Cancer Institute: “Multiple Myeloma Awareness and African American Differences”, “Plasma Cell”.
International Myeloma Foundation: “Do you have myeloma?” “What is Multiple Myeloma?” “Multiple Myeloma and African Americans – The Numbers.”
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