HOW I FOUND MY CANCER
Michael learned of his cancer diagnosis by accident. His glasses fell, and he bent over to pick them up, noticing a pain in his right side. At first, Michael thought he had a pulled muscle. Following the first of the 7 steps, Michael listened to his body. He followed his instincts and went to the doctor, where he was initially misdiagnosed with a B12 deficiency. His hematologist instructed him to take a B12 supplement and call her in a few months. Michael trusted his intuition and advocated for further tests, which revealed he had multiple myeloma, a type of blood cancer. At 51 years old and in good health, the diagnosis was daunting, but Michael took control of his health by researching extensively with the support of his wife, a registered nurse.
During the first six months of his diagnosis, Michael was covered by a Health Maintenance Organization (HMO), a type of health insurance plan that limited his options to what doctors he could see. However, once his insurance changed, he could seek the best possible care. His research led him to Dr. Bart Barlogie at the University of Arkansas for Medical Sciences (UAMS) , a specialist in multiple myeloma and an advocate for personalized medicine and clinical trials. Despite undergoing a tandem stem cell transplant that didn’t lead to remission, Michael persisted and eventually found success with immunotherapy.
THE IMPORTANCE OF CLINICAL TRIALS
Michael learned about clinical trials from his doctor, Dr. Barlogie, who suggested that he participate in one as part of his treatment. Dr. Barlogie was able to stabilize Michael’s cancer and keep him healthy until new treatments were available. Five years later, Mike worked with Dr. Barlogie, his consultant from Memorial Sloan Kettering, Dr. Saad Usmani, and Penn to enter a clinical trial. The team all advocated for Michael's acceptance into a trial. Once accepted, Michael had to travel far and stay in the hospital for ten days, undergoing various labs and tests. The process was physically demanding, and not all the trials were successful. However, he continued the trial as an outpatient, traveling back and forth for 18 months with the support of dedicated nurses.
Michael sought to give back and share his advocacy message by submitting a poster presentation to the American Association for Cancer Research conference in San Diego. Titled “Patients First: Harnessing Investor Influence on Clinical Trials,” the presentation outlined how the pharmaceutical industry has the potential to further enhance patient-centric approaches in clinical trial design.
To Michael, being a patient advocate is a lifestyle. He believes that clinical trials should always be part of the discussion with healthcare providers. Michael’s experience underscores the importance of these trials, not just for current treatments but also for future patients. His advice is clear: prevention should not be a reactive sport. Patients owe it to those who came before them and to those who will come after to consider participating in clinical trials.
HEALTH SHOULD NOT BE A “REACTIVE SPORT”
Michael's story is a powerful reminder of the impact self-advocacy and participation in clinical trials can have on the fight against cancer. He discussed that health should not be a “Reactive sport.” We shouldn’t wait for an illness diagnosis before looking inward and examining our lifestyle choices. I, too, realized in Chapter Five of my book Just Diagnosed, titled “Are We A Product of What We Eat, Our Environment, and Lifestyle Choices?” that so much is within our control as consumers. We also need to be empowered by taking control of our diagnoses and our health daily. And indeed, as Michael pointed out, nothing is a more vital wake-up call to do that than being diagnosed with an illness.
The National Cancer Institute, part of the National Institutes for Health, and the World Cancer Research Fund have estimated that 30-40% of all cancers are preventable to some extent through appropriate diets, physical activity, and maintaining appropriate body weight.
I am so grateful that Michael took the time to share his story, pay it forward, and help others. At the end of our discussion, I asked Michael to share a few organizations he has worked with and have shown him support and books he’s read that may be helpful to you who are reading this! Here they are:
