What One Warrior Wants You to Know About Multiple Myeloma

It was persistent pain below her left shoulder blade that prompted Evelyn to visit the doctor. Through the different misdiagnoses and treatments, it continued. An MRI was recommended but a work trip delayed it. While traveling, she experienced intense pain in her leg and as soon as she returned home, she had that MRI which prompted a bone marrow biopsy. The true culprit was revealed: multiple myeloma.

Multiple myeloma is a type of cancer that develops in bone marrow and can prevent the immune system from working properly. Left unchecked, myeloma cells can continue to multiply and spread, causing problems in other parts of the body. Although multiple myeloma is considered a rare cancer, it is the most common form of blood cancer among African Americans. In fact, African Americans are more than twice as likely to be diagnosed with multiple myeloma compared to White Americans and are usually diagnosed at a younger age.

Evelyn, who had battled breast cancer years earlier, recalls the shock of this news, “The first few months it felt like a rollercoaster because you don’t want to believe that you have this disease.”

Through her treatment journey, she learned a lot about her condition, recognized the profound impact of a support system and became aware of the lack of representation among African Americans living with multiple myeloma. Determined to ensure that others wouldn’t have to feel alone in their own battle, she became an inspirational mentor, offering valuable insights and a comforting presence to fellow patients. With the wisdom gained through her journey, Evelyn has a wealth of advice to share, encouraging others to advocate for themselves and to never lose hope in their pursuit of a brighter tomorrow.

“Do your research.”

Evelyn knew she needed to get educated about this disease and understand her treatment options, but the heavy emotional burden made it difficult to absorb new information and ask the right questions.

Her oncologist urged her not to rely on basic internet searches for answers, which can often yield outdated information, but to seek reputable organizations, like the Multiple Myeloma Research Foundation (MMRF) and the Leukemia and Lymphoma Society to learn more about what multiple myeloma is and how it affects African Americans specifically. These credible sources kept her informed about treatment options, clinical trials and ways to manage the challenges associated with the disease.

One in five people living with multiple myeloma are African American, yet representation among patient advocates is limited. Evelyn recalls a conversation with an MMRF nurse who said, “A lot of times we get African American patients that call and say they want to speak to someone who looks like them, but we don’t have anyone.” It emphasized the need for better representation and support within the healthcare system, inspiring Evelyn to be that support for others living with multiple myeloma.

She recalls the first patient she mentored with fondness. “I remember pulling over and sitting in the parking lot talking for about two hours. He was crying and just trying to wrap his head around the diagnosis.” Since she had been in that position before, she began to share her experience. He saw that it wasn’t an immediate death sentence for him, but that most cases are treatable,” said Evelyn.

Their connection remains unshaken to this day, a living testament to the power of empathy and shared experiences. “He has a new outlook on life now,” she says.

“Get a second opinion.”

Her most important piece of advice to those who have just received a diagnosis is to get a second opinion from a multiple myeloma specialist. She learned that from her own oncologist who referred her to a multiple myeloma specialist. He felt her myeloma wasn’t responding as well as it could, knowing the treatment options he could offer at this stage were limited. But this doesn’t mean giving up an oncologist you’re comfortable with.

What worked for Evelyn was adding the specialist to her existing care team, expanding the treatment approaches to consider. This way, she didn’t have to cycle through treatments to find one that worked. She collaborated with her care team and they made those decisions together.

“Advocate for yourself.”

Evelyn’s experience taught her that navigating this complex disease required not only resilience but advocacy. She comes prepared with questions for her specialists, goes in for regular screenings and is keenly aware of how her body is responding to therapy. As a mentor, she empowers other patients to understand their disease and seek answers that help them feel in control of their care.

Clinical trials have played a major role in advancing treatments for multiple myeloma and other conditions, but African Americans are generally underrepresented, making it difficult to understand how treatments impact the community. As a clinical trial participant, Evelyn has encouraged others to strongly consider that option if their treatment regimen is ineffective, they are eligible and the opportunity arises. “People respond differently [to treatments]; it’s not one-size-fits-all for multiple myeloma.”

Evidence shows that African American patients who receive treatment for multiple myeloma can do just as well as, and sometimes better than, White Americans. Yet, research has shown that African Americans have benefited less from recent medical advancements that have led to improvements in survival in more recent years. As of 2022, only 4% of patients in multiple myeloma clinical trials were African American despite making up 20% of people living with multiple myeloma today. Begging Evelyn’s point, “If we don’t participate in the trial, what do we have to say?”

*         *         *         *

Evelyn’s journey has been deeply influenced by the unwavering support of her faith, family, and friends. Her faith provided her with strength, guiding her through the challenges with unwavering hope. Her family and friends, a pillar of support, offered encouragement, love, and a sense of belonging during the toughest moments.

Evelyn admits, “You have days where you give yourself a pity party. But give yourself 48 hours and then you have to get up and let it go.” When times are uncertain, Evelyn offers perspective she can stand by, “I think that with all experiences there’s something good that comes out of it.”

For more information about multiple myeloma and resources to help navigate your care in your discussions with your healthcare provider, visit MyelomaCentral.com.