In Malcom’s memory: Turning tragedy into advocacy for the early detection of multiple myeloma

 

March is Multiple Myeloma Awareness Month, a time dedicated to raising awareness about this rare blood cancer.

 

 

The road to a diagnosis

Life can present unforeseen challenges that test our endurance and resolve. For our colleague Michelle Ware-Ivy, such a journey began when her husband started experiencing health issues.

Routine blood testing in 2018 indicated that her husband, Malcom Ivy, had elevated calcium and protein levels. Since these results are often associated with diabetes, his physician told him to continue his daily workout routine, watch what he ate and opted not to investigate further. 

Michelle now knows that was a crucial mistake. 

Two years later, Malcom began experiencing overwhelming fatigue and persistent back pain. It wasn’t until he became breathless and unable to climb up his daily flight of stairs that he sought medical attention. 

Alarming lab results revealed critically low hemoglobin and extremely high protein and calcium levels, and Malcom was immediately admitted to intensive care for a more comprehensive evaluation.

 

After stabilizing his blood levels, a bone marrow examination revealed the heartbreaking diagnosis: stage three high-risk multiple myeloma.

 

Multiple myeloma is a rare blood cancer that forms in plasma cells. These cancerous plasma cells build up in bone marrow, producing abnormal antibodies and causing conditions that can affect the bones, kidneys and the ability to make healthy red and white blood cells as well as platelets. While there is no cure for multiple myeloma, there are treatments that can help slow its progress. 

 

Early stages of the disease may not present any symptoms, but when they do appear they can include:

  • Fatigue and breathlessness
  • Bone pain (especially in the spine, chest or hips)
  • Nausea
  • Constipation
  • Loss of appetite
  • Mental fogginess or confusion
  • Tiredness
  • Infections
  • Weight loss
  • Weakness
  • Thirst 
  • Needing to urinate often

 

Michelle recalled, "My husband was healthy, worked out every day and made good food choices. We were totally blown away by the diagnosis because we had never heard of multiple myeloma. It was very shocking to us that this actually existed and that we did not know about it.

 

Had we known then that higher calcium and protein levels indicators for multiple myeloma, we would have insisted on a diagnostic test, like Thermo Fisher's Optilite Freelite assays. Instead, Malcom’s physician called it prediabetes and attributed his aches to an active lifestyle. There is a lack of awareness among patients and physicians which often leads to symptoms being misinterpreted, misdiagnosed or undetected until it's too late. If we had caught it before we did, Malcom may have had a different outcome."

 

Although devastating, the diagnosis provided clarity and a path forward, enabling Malcom to receive advanced specialized care.

Harnessing her Thermo Fisher network

Michelle is part of our Global Business Services team and has worked for Thermo Fisher for 16 years. Leveraging resources and information available through her extensive network, she sought to better understand the disease and explore various diagnostic tools and treatments.

 

Through these relationships she gained valuable insights into the best available treatments and clinical trials. One of these options included participating in expanded clinical trials at the Cleveland Clinic – an opportunity she discovered thanks to her Thermo Fisher network.

 

As a colleague based in the U.S., Michelle also benefited from an internal Thermo Fisher cancer support program,  which connected her to valuable resources including a second opinion on Malcom's treatment plan. The program's Cancer Navigators were instrumental in ensuring that Michelle and Malcom were making informed decisions regarding his care.

 

"We were fortunate to have access to the best care, which brings me tremendous peace each day. That's not the case for everyone,” Michelle reflected. “Being part of Thermo Fisher allowed me to access vital information and support, which was crucial in our fight against this disease. Through my experience, I knew that I wanted to help others access the resources that I had access to."

Carrying Malcom's legacy through advocacy and awareness 

“Despite a valiant earthly fight, Malcom graduated to heaven in 2023,” shared Michelle. To honor his memory, Michelle established Amplify Black Myeloma Voices to increase awareness for earlier detection, advocate for better access to treatment options, and connect science to faith – particularly within the Black community.

The foundation’s iTrust & Believe program supports patients and their care partners by providing weekly inspiration, including prayer cards, to foster hope and positive mental wellbeing through the challenges of diagnosis and treatment. This unique program addresses the gap in mental health support, offering crucial encouragement for navigating both good and difficult days.

According to the International Myeloma Foundation (IMF), the disease is more prevalent in men and twice as common—and twice as deadly—in Black patients compared to white patients.

Genetic biomarkers, disparities in access to healthcare and frequent misdiagnosis or delayed diagnosis contribute to higher incidence rates and worse outcomes.

Michelle emphasized that  earlier detection is crucial for improving patient outcomes, advocating for the implementation of universal testing protocols.

Michelle also engages in educational outreach at national Black events and African American church health fairs, partnering with the Leukemia & Lymphoma Society and the IMF’s diversity initiative, M-Power. These efforts aim to enhance both the short- and long-term outcomes of African American patients.

Recently, the foundation participated in the Black Woman Expo in Chicago, Illinois, to educate the general public about the disease.

"Knowing that we were the first to educate folks on the signs and symptoms of multiple myeloma was quite powerful. Nearly 75% of visitors to the booth were unaware of the disease. The hope is that if they or someone they know experience symptoms, they will remember hearing about multiple myeloma and seek additional testing."

Early detection can help manage the disease as a chronic condition. In addition to raising awareness, Michelle leverages her network to guide newly diagnosed patients about clinical trials and treatment options.

 

While there have been some treatment advancements in the past year, overall survival rates remain low. "I am the voice for the voiceless because there are many others like Malcom who do not achieve remission even after advanced treatment. There is a critical unmet clinical need that is still being researched. Meanwhile, we must increase education and awareness for earlier detection to reduce delayed and missed diagnoses. I will keep advocating so other loved ones are not impacted," Michelle said.

A legacy of hope

Fueled by her love for her husband, Michelle's advocacy work highlights the profound impact that early and accurate diagnosis can have on patient outcomes. Her efforts are a powerful reminder of the importance of awareness, and access to care in the fight against multiple myeloma.

 

Through her visionary leadership and relentless advocacy, Michelle is driving transformative change, amplifying unheard voices, and reshaping the future of the multiple myeloma community.

 

“Malcom's strength and resilience continue to inspire me every day. My hope is that no other family has to endure the pain of a late diagnosis, and by advocating for earlier detection and equitable access to care, I aim to turn our personal tragedy into a beacon of hope for others," said Michelle.

How is Thermo Fisher helping the fight against multiple myeloma? 

  • Innovative diagnostic tools: Advanced diagnostic technologies, including the Optilite Freelite assays for detecting immunoglobulin light chains, are essential in diagnosing and monitoring multiple myeloma. 
  • CAR-T therapy solutions: Instruments and consumables support the development and manufacturing of CAR-T cell therapies, which are groundbreaking treatments for multiple myeloma. 
  • Clinical trial support: Collaboration with various partners to deliver clinical trials, which focus on improving patient outcomes and addressing gaps in patient diversity. 
  • Comprehensive research and development: Investment in cutting-edge research aims to understand the underlying biology of multiple myeloma and develop new therapeutic strategies.

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