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What it’s like to live with multiple myeloma, a cancer that affects Black people more

Chantal Pierre-Louis' mother had multiple myeloma and died soon after diagnosis. When Pierre-Louis learned she had it, she wondered what that meant for her.
After losing her mother to multiple myeloma, a rare blood cancer, Chantal Pierre-Louis felt stunned to learn she has the same cancer. 
After losing her mother to multiple myeloma, a rare blood cancer, Chantal Pierre-Louis felt stunned to learn she has the same cancer. Courtesy Chantal Pierre-Louis

When Chantal Pierre-Louis lost her appetite, a coworker suggested that she see a doctor to have her thyroid checked. After a series of appointments, she learned she had multiple myeloma, which is the same rare blood cancer Colin Powell had at his death from COVID-19 complications. She felt shocked. Her mom had died of it in 2010.

“I try not to look at it as a death sentence,” Pierre-Louis, 50, of Brooklyn, New York, told TODAY. “I don’t want anyone to see me suffering. I don’t want to put my family through what my mother went through.”

'Insidious' cancer

Pierre-Louis had noticed that she had a backache that made standing for long periods of time difficult. But then when her appetite waned, a coworker recommended that she get her thyroid checked. Her coworker also wondered if she had pica because Pierre-Louis often only ate ice.

When Pierre-Louis went to her physical, she felt surprised to learn her bloodwork indicated something was wrong. At first, the doctors put her on various treatments that didn’t work. That’s when she sought a second opinion.  

“It was confirmed that it was definitely multiple myeloma,” she said.

Multiple myeloma is a rare blood cancer that disproportionately affects Black people. People are most often diagnosed when they are elderly, said Dr. Cesar Rodriguez, clinical director of multiple myeloma at Mount Sinai Brooklyn and the Mount Sinai Hospital in New York City, who is now Pierre-Louis’ doctor.

“Multiple myeloma is not a very common cancer,” he told TODAY. “It only comprises 2% of all cancers. It tends to affect men more than women. It tends to affect Black ethnicity.”

While it is not hereditary, people with a first-degree relative who have it — a parent, sibling or child — are more likely to have it. But even though Pierre-Louis’ mother had it, her situation is unusual.

“Chantal, her case is a very unique case in many ways,” Rodriguez said. “She is a younger patient. Normally we diagnosed myeloma in people in their 60s and 70s.”

While being on constant treatment for multiple myeloma can sometimes feel overwhelming, Chantal Pierre-Louis tries to stay upbeat and positive. Having more options for care has also given her a sense of comfort.
While being on constant treatment for multiple myeloma can sometimes feel overwhelming, Chantal Pierre-Louis tries to stay upbeat and positive. Having more options for care has also given her a sense of comfort.Courtesy Chantal Pierre-Louis

There’s no screening tests for it as blood tests can sometimes be unreliable or indicate a different condition.

“Multiple myeloma is a pretty insidious type of disease that gives very vague symptoms,” Rodriguez said. “Most of the time the symptoms of somebody with myeloma consists of feeling tired, having bone pain, having back pain and having frequent infections.”

Because people are often diagnosed later in life, they don’t realize that bone and back pain could be a sign of anything more than aging. What’s more, it's a condition that dramatically impacts people of color and there are barriers to care. That’s why Rodriguez has a clinic in the community that works with an oncologist to provide care and enroll patients in clinical studies.

“We have to bridge this gap between those who have access to all of these resources and those who have limitations whether it be geographical, socioeconomical, insurance or education,” he said. “Our motto is ‘we find a way,’ and we’re trying to find a way of closing that distance. Instead of having a patient come to us, we go to them.”

Since opening in December, they have seen a 50% increase in patients each month.

“Patients are happier to have a much shorter commute,” he said. “We work as a team and we work to aid the local oncologists … if they do benefit from a clinical trial or more specialized care we are available to provide that here locally.”

When Pierre-Louis was diagnosed, her cancer was considered stage 2. But patients with multiple myeloma experience frequent recurrences of the cancer so they often have to be on some form of treatment for much of their lives.

“While on a medication, the disease remains controlled,” Rodriguez said. “Hopefully in the future we will find new therapies that will not require having to be on some type of maintenance therapy forever.”

Pierre-Louis certainly knew from her mother’s diagnosis and death that the cancer could become fatal quickly.

“I was told that my myeloma is so aggressive that I was only going to live one year and if I am lucky it will be three years,” she said. “(At the clinic) I would see someone one day and then I’d never see them again. And when I would say where so and so was … they would just give me that look. I already knew what happened.”

After doctors stabilized her myeloma, she was diagnosed with thyroid cancer and doctors removed 10 nodules to treat that cancer.

“From the beginning they told me chemo was for life. Even right now, it’s not active, but if I see a slight percentage (change), cancer will be there,” Pierre-Louis said. “You can’t just stop chemo.”

Constant treatment feels overwhelming and Pierre Louis often feels “very tired.” She also grapples with pain and needs to take some pain medication to help. But those drugs impact her ability to sleep.

“Some days I have to choose between sleep and pain,” she said. “Most days I choose not to take it because I don’t want to be addicted to it. I’ve been on it for a long time.”

After she changed jobs and lost her insurance, her old clinic wouldn’t accept Medicaid and out of pocket payments would cost her $30,000 for each dose. She panicked.

“This was my biggest fear — not having treatment,” she said. “I’m saying to myself, ‘This is so unfair.’”

But that’s when she learned about Mount Sinai and that they would accept Medicaid so she started going there and seeing Rodriguez.

“I feel safe,” she said. “Even if I’m going to be unable to work, I will still receive treatment.”

Living with cancer

Despite often feeling overwhelmed, Pierre-Louis tries to remain upbeat and “strong for her family.” She laughs and jokes readily, hoping to make her loved ones laugh.

“I try to say to myself, ‘You have cancer. Cancer does not have you,’” she said. “I think about it like having diabetes or hypertension. You take your medication. You follow your doctor’s advice and you try to keep moving. I try not to look at it as a death sentence.”But having cancer and consistently undergoing cancer treatments has been difficult, especially during the pandemic. She had COVID-19 and experienced pancreatitis and a blood clot under her arm. Pierre-Louis feels it’s important to share her story because self-advocacy helped her find treatment after she couldn’t afford it. She wants others to know that there’s hope.

“It is very important to be involved in the treatment and care that you are receiving,” she said. “You have to speak up for yourself when you’re feeling that something is not right. You have to advocate for yourself.”