ImmunoAdvocates K.C. Dill Lung Cancer K.C.’s Story K.C. was initially diagnosed with stage 3 non-small cell lung cancer in February 2015. After receiving chemotherapy and radiation, her healthcare team was not optimistic—her cancer had spread to her lymph nodes and progressed to stage 4. K.C. sought a second opinion in Houston and began treatment of nivolumab (Opdivo®), a PD-1 checkpoint inhibitor. She responded to the immunotherapy immediately. She completed treatment in September 2016 and today remains disease-free. K.C. continues to work full-time and experiences new adventures with her husband and two daughters. Questions and Answers How and when did you first learn you had cancer? I was experiencing facial swelling and fatigue that I attributed to allergies. I was taken to the emergency room for shortness of breath and a CT scan revealed a large mass in the center of my chest. The oncologist on call that evening gave me only 30 to 90 days to live due to the position of the mass. I told him that he didn’t know me or my God and that he was mistaken. I began emergency radiation treatment three days later. How did you learn about immunotherapy and why did you decide to do it? The first time I heard the word immunotherapy was in Dr. Jun Zhang’s office at Baylor College of Medicine. She explained that some tumors produce a protein that works like a mask, making it invisible to the immune system. An immunotherapy, known as a checkpoint inhibitor, takes the mask off the cancer cells, thereby allowing your immune system to recognize and attack it. I thought this was amazing, and immediately wanted to be treated with the checkpoint inhibitor nivolumab. I had one week between the initial consultation and the infusion which I spent online researching the drug. The first page I clicked on was the CRI website where I watched immunotherapy patient story videos of Maureen O’Grady and Pam Griffith and felt immediately at ease. The CRI website has a wealth of information. I then graduated to watching scientific videos explaining how checkpoint inhibitors, like nivolumab, work. I learned about the cancer research of Dr. James Allison and other scientists who are working to save lives. What was treatment like? Did you have any side effects? Treatment with immunotherapy was so much easier than what I expected. At each check-in appointment I would first have my blood drawn by a nurse. Then I would wait to be called in for my appointment with Dr. Zhang, who would update me on my blood work and ask me general questions about how I had been feeling the past two weeks. After each appointment, I would go to the infusion center for treatment. This whole process took about three hours from arrival to completion. The longest wait would be for the pharmacist to mix the nivolumab. The health care team based my infusion dosage on my current weight. The only side effect I ever experienced was flu-like symptoms, and this only occurred once after my first infusion. My health care team told me this was a good thing because it meant my immune system was responding to the treatment. I began to feel better immediately after treatment. How did immunotherapy compare to other treatments you may have received, if any? I had chemotherapy and radiation initially which was brutal. Each appointment lasted a full day. I was on blood thinners and had low platelets (27) so I felt fatigued all the time. Around the 20th out of 30 radiation treatments, the skin on my chest and back began to blister and burn. I had a hard time swallowing around this time because the radiation was killing the cells lining my esophagus. I was on steroids as well, and I had developed the typical moon face from the prednisone. I was loosing my hair in large clumps. Dr. Zhang took me off all of my medications before I began immunotherapy. The immunotherapy stimulated my immune system to fight the cancer in a way that chemotherapy and radiation therapy did not. I began to feel better immediately. My coloring improved as well as my counts and weight; my hair returned. I was no longer sick. My quality of life has not been compromised with this treatment. In fact, I feel just as healthy as I did before diagnosis. Are there things that surprise you about the cancer experience? I am a private person. When I was first diagnosed with cancer, I told few people about my illness. I did not want to hear any negativity. An advanced stage lung cancer diagnosis in 2015 was usually considered terminal. I knew my case was inoperable, and the statistics were not good, but I knew I would survive. I didn’t want to hear anyone’s lung cancer experience that was not hopeful. When I began immunotherapy, my reservations about sharing my illness vanished. I feel immunotherapy is a beneficial treatment and needs more exposure. There is a stigma associated with cancer, especially lung cancer. Many people believe it is an automatic death sentence. I have become more vocal about patient advocacy and research since my success with this treatment. The Cancer Research Institute has given advocates a great platform to promote immunotherapy. In sharing my story with others I have gained confidence that I didn’t have before. What would you want another patient to know about immunotherapy or about participating in a clinical trial? Just because immunotherapy is a relatively new treatment doesn’t mean it’s experimental or risky. I was actually monitored more closely on immunotherapy than chemotherapy and radiation. I knew my oncologist was looking out for my best interests by placing me on this treatment. Cancer immunothearpy research conducted today is groundbreaking. Treatment and response times are getting shorter, and patients are living longer. All of this is possible thanks to cancer patient participation in clinical trials. The immune system has the ability to recognize and kill cancer cells. It just has to be trained properly. I am grateful to be a patient who responded to immunotherapy. My hope is that one day immunotherapy will be the only treatment needed for cancer. Thankfully, immunotherapy made lung cancer a mere chapter in my life story.