(BPT) – Sponsored by GSK – Thomas, an African American man, shares his multiple myeloma story: from diagnosis at a young age to continued treatment to his role in clinical trials and as an advocate. This is his personal story, and others may be different. Thomas is a paid spokesperson for GSK.
At 34 years old, Thomas’ world changed forever. As the youngest of 11 siblings and father to 3 young children at the time, he was busy staying active in the gym, working and spending time with loved ones. While on a family vacation, a radiating pain from his shoulder led him down a path he never could have imagined for himself – he was diagnosed with multiple myeloma.
Upon arriving home from his family vacation, Thomas immediately saw his family physician for his shoulder pain and was diagnosed with bursitis in his shoulder. Bursitis is the painful swelling of the fluid-filled pads that cushion the joints. The diagnosis didn’t sit right with him – he knew there was more going on with his body. He persisted and contacted a sports medicine specialist, underwent tests and learned that his pain was caused by cancerous plasma cells in his shoulder blades, known as plasmacytoma.
After being referred to an oncologist and undergoing initial radiation treatment, Thomas noticed the pain returning, this time in his lower back. It was then that he was diagnosed with multiple myeloma and his journey with continued treatment and advocacy began.
Navigating the trials and tribulations of multiple myeloma
Multiple myeloma is a disease that starts in the plasma cells, a type of white blood cell that normally fights infections. It is the second most common blood cancer in the US[i] with more than 34,000 people estimated to be diagnosed this year.[ii] This type of cancer is generally considered treatable, but not curable.[i] African Americans are disproportionately affected by multiple myeloma and are two to three times as likely to be diagnosed when compared with non-Hispanic Whites.[iii]
When Thomas was first diagnosed, he was scared about what this diagnosis meant for his future, but he refused to become a statistic. Following his initial radiation treatment for multiple myeloma, he underwent an autologous stem cell transplant – a standard treatment option for newly diagnosed patients. An autologous stem cell transplant removes the patient’s own stem cells from the bone marrow or blood where they are returned following chemotherapy and sometimes radiation.[iv] After just two months, he relapsed, meaning his disease returned.
Unfortunately, for multiple myeloma patients this is not uncommon, even after responding positively to treatment. For many, there’s also the possibility that their disease stops responding to a treatment, which is known as refractory multiple myeloma.
Still hopeful, Thomas made the decision to enroll in two clinical trials. He realized that participation in clinical trials wasn’t just important for him – it was for all of the people who would be diagnosed after him, particularly for those within the African American community, as this group is historically underrepresented in clinical trials.[v]
During the clinical trials, Thomas received allogenic stem cell transplants, meaning the patient receives stem cells from another person, who is closely matched to the patient’s cell type, which may be better at fighting the cancer.[iv] In Thomas’ case, he received donor stem cells from his brother.
Thomas understood the importance of equitable representation and a care team who could help him seek out available clinical trials. He noted that while many don’t realize it, participation in clinical trials isn’t just for those who have had a failed treatment – some trials exist to see how long treatment can work or to help determine the right dose of a drug.
Strength in numbers
Thomas is incredibly open about the impact of his care team on his experience with multiple myeloma. He has a very close relationship with his oncologist who specializes in hematologic conditions, such as multiple myeloma. When he was first diagnosed, her involvement in the International Myeloma Working Group, an organization that conducts research to improve outcomes for myeloma patients and provides consensus guidelines for the global community, allowed Thomas to access resources and information that he may not have had otherwise. He also gives credit to his oncology nurses, who were an integral part of his day-to-day treatment and were there when he needed more support and answers to questions regarding his diagnosis and treatment.
Beyond his core medical team, Thomas has access to a social worker who helps him make sure that he is not only taking care of his physical health, but his mental health too. His social worker has been an important resource for Thomas, especially when he started his work as an advocate, speaking at events and meeting other patients like him through multiple myeloma support groups.
Thomas also leans on his strong circle of friends and family who he can rely on, vent to and count on to get him out of ‘the myeloma universe.’ For him, this is just as important as the medical interventions.
A message for his community
As a Black man who was diagnosed at a young age, it has been especially important for Thomas to connect with his community and share information about multiple myeloma and the early signs and symptoms to look out for. African Americans have an earlier onset of diagnosis, which was the case for Thomas, and tend to experience conditions that could be an indicator of the disease, such as hypertension or high blood pressure.[vi] Some other common symptoms of the disease include bone pain (most often in the back, hips and skull), high blood levels of calcium and low blood counts, which can lead to other symptoms such as anemia.[vii]
Although it can sometimes feel uncomfortable, Thomas encourages those in his community to have open conversations with their loved ones to understand their health history and genetic risk. Learning the signs and symptoms of multiple myeloma, as well as potential risk factors, can help with early detection and determining how best to treat it.
In his own words, Thomas’ experience with multiple myeloma was ‘another test to his testimony.’ Despite his diagnosis testing his strength and resiliency, both physically and mentally, Thomas’ advocacy work has allowed him to bring his joy to others in ways he never imagined. He founded the Triangle Area Support Group, a group focused on supporting and educating patients and their loved ones faced with multiple myeloma. He is grateful for the opportunity to be an advocate for those in the multiple myeloma community and hopes that his story inspires and empowers people to learn more about multiple myeloma, including their risk factors, treatment options and resources.
If you or a loved one have been diagnosed with multiple myeloma, reach out to organizations such as International Myeloma Foundation, Multiple Myeloma Research Foundation, HealthTree Foundation, or Leukemia and Lymphoma Society to find a support group in your area. You can learn more about multiple myeloma and how GSK is working to get ahead of the disease for patients here.
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i Kazandjian D. Seminars in Oncology. 2016;43(6):676-681.
ii American Cancer Society. Cancer facts & figures 2023. Accessed February 22, 2023. https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/2023-cancer-facts-figures.html
iii Dong J, et al. Blood Cancer Journal. 2022;12(2).
iv Cancer.org. Stem Cell Transplant for Multiple Myeloma. Published 2017. Accessed February 22, 2023. https://www.cancer.org/cancer/multiple-myeloma/treating/stem-cell-transplant.html
v Awidi M, et al. JCO Oncology Practice. 2021;17(5):265-271.
vi Cancer.org. Cancer Facts & Figures for African Americans. Accessed February 22, 2023. https://www.cancer.org/research/cancer-facts-statistics/cancer-facts-figures-for-african-americans.html
vii Cancer.org. Signs and Symptoms of Multiple Myeloma. Published 2018. Accessed February 22, 2023. https://www.cancer.org/cancer/multiple-myeloma/detection-diagnosis-staging/signs-symptoms.html