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I Welcome Being the Face of Multiple Myeloma

With African Americans twice as likely to be diagnosed with multiple myeloma as whites, I’m making it my life’s goal to advocate for health-care equity for all.


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Thirteen years ago, at age 34, I was healthy and enjoying life. I went to the gym almost daily, and when I wasn’t at the gym, I was shooting hoops with my friends. During a gym workout while on a family vacation, I suddenly felt excruciating pain in my left shoulder and thought I must have strained a muscle while lifting weights. When the pain recurred a few days later while playing basketball, I made an appointment with my family physician.

Thomas Goode

After giving me a cursory physical examination, including manually rotating my shoulder, he declared that I had bursitis. I was so young and in such good physical shape, I instinctively knew the diagnosis was wrong and made an appointment with my sports medicine physician, who prescribed a series of computed tomography (CT) scans and magnetic resonance imaging (MRI) of my upper body. The result wasn’t good. I was diagnosed with solitary bone plasmacytoma of the shoulder. When I asked him to explain what the diagnosis meant, as I had never heard of solitary bone plasmacytoma before, he said I had multiple myeloma, a cancerous tumor of the plasma cells that was isolated to one area in my left scapula. The only words I remember hearing were “cancerous tumor,” and I was determined to get rid of it.

Choosing Hope Over Despair

SINCE THE myeloma was localized to this single site in my body, my oncologist recommended 6 weeks of radiation therapy. Ten months later, the excruciating pain returned, but this time it was in my lower back. The pain was so intense, I remember lying on the floor, unable to move. Additional CT and MRI scans found that the myeloma had spread to my lower vertebrae and the ribs on my right side. Because of my age and otherwise good health, my oncologist recommended an autologous stem cell transplant. Although I was hoping for a prolonged response to the therapy, I relapsed just 2 months after receiving the transplant.

The news that the transplant had failed was crushingly disappointing, but I was still determined to do whatever was necessary to get to a cure or at least long-term remission if a cure was not possible. I agreed to undergo an allogeneic stem cell transplant as part of a clinical trial using human leukocyte antigen (HLA)-matched donor cells from my brother, Earnest. The transplant gave me a 2-year reprieve from cancer, but in 2010, I relapsed again.

Now, my oncologist said we had to be even more aggressive to keep the cancer from progressing. So, he recommended a second allogeneic transplant, again as part of a clinical trial and using donor cells from Earnest, preceded by an intensive conditioning regimen of high-dose chemotherapy, which included doxorubicin, vorinostat (Zolinza), bortezomib (Velcade), and dexamethasone, plus total-body irradiation.

Although the cumulative effects from the therapy and the contraction of graft-vs-host disease after the transplant were so serious that they kept me in the hospital for 127 days, I was relieved to learn that the transplant was successful in pushing back my myeloma. I was prescribed an infusion of bortezomib every 2 weeks to maintain my remission. In 2012, I relapsed again.

Refusing Defeat

EVEN AFTER three transplant failures, I refused to accept defeat. Physically unable to undergo a fourth stem cell transplant, my oncologist prescribed a combination regimen of lenalidomide (Revlimid) and dexamethasone. The treatment, as well as three periodic donor lymphocyte infusions to boost my immune system, has been successful at keeping the myeloma from advancing.

“I want to make a difference in the lives of patients with multiple myeloma and help them to overcome the emotional roller coaster of having a so-far incurable cancer and to thrive after their diagnosis.”
— Thomas Goode

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Although I now realize it is unlikely my cancer is curable, I am satisfied to know that I can potentially live for a long time treating it as a chronic disease and have learned to move on with my life. Despite being plagued with peripheral neuropathy in my hands and feet from my treatment, which is so debilitating that I can’t stand for long periods, I’m able to push through the pain to achieve the joy I get from maintaining a rigorous physical activity routine. Those daily workouts sustain me both physically and mentally and have enabled me to become active in the multiple myeloma community, helping other survivors cope with their cancer, especially other African Americans.

Advocating for Health-Care Equity

MULTIPLE MYELOMA disproportionately affects African Americans compared with white individuals. African Americans are twice as likely to develop the blood cancer as white patients and are also more likely to be diagnosed at a younger age.1 Among the factors contributing to this disparity is the lack of awareness of the cancer among the African American community as well as among primary care physicians.

To help raise awareness of this rare cancer and provide support for survivors, in 2014, I cofounded the Triangle Area Multiple Myeloma Support Group, which is based in my hometown of Durham, North Carolina. Among the goals of my advocacy is to increase the participation of African Americans in clinical trials, which is so crucial to advancing effective treatments for all patients with this cancer and to understanding why multiple myeloma poses a greater risk for African Americans than white patients.

There is a lot of work to be done to remove the barriers preventing clinical trial participation by African Americans. Many older African American patients remember the notorious Tuskegee syphilis experiment2 and fear being guinea pigs in testing new therapies. Other patients live far from clinical trial sites and are unable to travel long distances to participate in these studies or are never informed about clinical trials from their medical team.

I want to make a difference in the lives of patients with multiple myeloma and help them to overcome the emotional roller coaster of having a so-far incurable cancer and to thrive after their diagnosis. If I can accomplish those goals and serve as an inspiration for others with this cancer, I welcome being the face of myeloma.

Mr. Goode lives in Durham, North Carolina, and is the cofounder of the Triangle Area Multiple Myeloma Support Group (http://trianglearea.support.myeloma.org).

Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.

REFERENCES

1. National Cancer Institute: Multiple myeloma awareness and African American disparities. Available at www.cancer.gov/ about-nci/organization/crchd/blog/2017/ multiple-myeloma-disparities. Accessed November 27, 2018.

2. Centers for Disease Control and Prevention: The Tuskegee Timeline. Available at https://www.cdc.gov/tuskegee/timeline.htm. Accessed November 27, 2018.


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