Patients John Ryan Area of Research: Lung Cancer Lung Cancer John’s Story John was diagnosed with stage 4 adenocarcinoma non-small cell lung cancer in April 2013. Told he had six to nine months to live without treatment, or 12 to 18 months with treatment, he went through four cycles of chemotherapy. The first two rounds worked, and the second two rounds did not. Chemotherapy side effects left him feeling very weak and fatigued. Looking for next steps, his oncologist at Walter Reed National Military Medical Center referred him to Johns Hopkins Hospital for an immunotherapy clinical trial. John met Dr. Julie Brahmer and enrolled in a phase 3 clinical trial using nivolumab (Opdivo), an anti-PD-1 immunotherapy. He received his first infusion in October 2013, and within two months his tumor shrank by 65 percent. By July 2014, his tumor had shrunk by over 82 percent. Throughout the treatment John experienced minimal side effects related to minor skin itches. Today, John feels like the “luckiest man alive.” Having retired from a thirty-year naval career in 1992, and a second career in 2000, he now serves as a consumer reviewer on lung cancer research program boards at Walter Reed. He enjoys spending quality time with his wife, is active in his church, and always looks forward to vacationing with his children and grandkids. Questions and Answers CRI: How and when did you first learn you had cancer?John: I first learned about my lung cancer in April 2013, when I discovered blood in my sputum. I was directed to emergency care by my primary care physician, and after receiving a CT scan, I was informed that I had a tumor in my left lung. CRI: How did you learn about immunotherapy and why did you decide to do it?John: After being diagnosed at Walter Reed National Military Medical Center in Bethesda, MD, with stage 4 adenocarcinoma non-small cell lung cancer, and scheduled for chemotherapy as the first line standard of care treatment, I participated in a formal “Second Opinion” evaluation with Dr. William Pao/Chief Oncologist at Vanderbilt-Ingram Cancer Center in Nashville, TN. Dr. Pao strongly advised that when the chemotherapy was no longer working that I should be referred to Dr. Julie Brahmer at Johns Hopkins Hospital in Baltimore, MD, for an immunotherapy clinical trial opportunity. In September 2013, I was selected for the immunotherapy arm of a randomized phase 3 clinical trial. CRI: What was treatment like? Did you have any side effects?John: During the first month of my immunotherapy (October 2013), I was suffering from residual side effects of chemotherapy and cancer with fatigue, pain, weight loss, and pleural effusion. Once corrected by medical intervention at Walter Reed, my side effects were eliminated with the exception of minor skin itching. The fatigue and pain were gone. I regained weight. Most importantly, the CT scan at Johns Hopkins at the nine weeks mark, after four nivolumab (Opdivo) infusions, showed a most welcomed 65 percent shrinkage in tumor size. I have received 125 Opdivo infusions during the past 77 months [as of February 2020]. My tumor has shrunk by over 82%, and has remained stable to date. I negate minor side effects related to skin itching with applications of Cetaphil, a moisturizing cream. CRI: How did immunotherapy compare to other treatments you may have received, if any?John: Simply put, immunotherapy arrested my tumor with practically no side effects. Conversely, my chemotherapy treatments were terminated after four (three-week) cycles because the chemotherapy was not arresting tumor growth. In addition, while on chemotherapy, I experienced severe fatigue and weight loss, along with significant pain in my left arm and shoulder. CRI: Are there things that surprise you about the cancer experience?John: I have been deeply impressed by the vast order of magnitude devoted through philanthropy, medical research, and clinical translation to combat the various forms and stages of cancer. Conversely, the daunting complexity of the cancer microenvironment defines countless research challenges, with the attendant need to marshal the human and financial resources to conquer this dreadful disease. CRI: What would you want another patient to know about immunotherapy or about participating in a clinical trial?John: Immunotherapy represents an attractive potential for cure without the serious side effects related to surgery, chemotherapy, or radiation. Clinical trials are vital scientific research platforms essential for safe and viable drug and treatment regimen approvals.