When Stephen Huff, 30, of Franklin, Tennessee, retired from professional baseball to become a high school computer science teacher, he never dreamed that the shortness of breath he was experiencing was anything more than allergies. When it worsened and gave way to a nagging cough and a raised lymph node in his neck, Huff knew a visit to the doctor was long over-due. “I had put worries about my symptoms on the back-burner because I was transitioning out of being a professional athlete into another career. I wasn’t sure how I should feel since I wasn’t going to the gym as much. I began feeling wheezy when laying down. It felt like my lungs had some fluid in them, too.”
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At a walk-in clinic, Huff got an X-ray and a diagnosis of bronchitis. The doctor there said the lymph node was swollen in response to the infection. When his symptoms didn’t resolve, he went to see an ear, nose, and throat specialist (ENT). “He listened to my lungs and said I had pneumonia—not bronchitis—but when he felt my lymph node he said it didn’t feel right.” The ENT ordered a CAT scan, which Huff’s insurance denied. He ended up waiting five months for the CAT scan, while doctors ordered more X-rays and another round of antibiotics. Finally, the CAT scan was approved: “I was driving home from the scan when the doctor called me and said it wasn’t good. I pulled to the side of the road as he told me I had a lot of abnormalities in my body, and I needed to see an oncologist. That’s when the panic set in—when he told me it was possibly cancer.”
Engaged to be married at the time, Huff called his wife, Emily, who was out of town. She took the first flight home, as the couple grappled with the shocking news. “I sat in the doctor’s office filling out paperwork that asked if I had a living will. I just thought, how did I go from healthy and young to this?” A biopsy revealed Huff had non-small cell lung cancer; a genomic test showed he tested positive for a mutation referred to as anaplastic lymphoma kinase (ALK).
Lung cancer is the leading cause of death among women and men, with more people dying every year of the disease—about 150,050 annually—than breast, colon, and prostate cancers combined. A PET scan showed tumors in his lungs, lymph nodes, liver, and spinal cord. Less than 5 percent of lung cancers have the ALK mutation—but it turns out this was a lucky development: It meant Huff could take advantage of targeted therapy and immunotherapy options that researchers have developed to treat ALK mutation.
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“When I got the diagnosis and heard that the five-year survival rate is less than 5 percent, I just couldn’t believe it. My doctor, Leora Horn, MD, MSc, at Vanderbilt University Medical Center told me there’s a stigma to lung cancer, and most people assume it’s a smoker’s disease. I used to be one of those people, too.” Huff and his wife wanted to raise awareness by purchasing a specialty license plate, and they quickly found there wasn’t one for lung cancer in Tennessee. “We did some research and decided to make one. We needed to raise $35,000 and get a thousand pre-orders.” To help with the fundraising effort, The Huff Project was created—a nonprofit with a mission to raise awareness and funding—and has since raised almost $90,000 for lung cancer research and drug development through a variety of events.
Today, Huff is thriving on the targeted therapy Alecensa. His tumors are stable, and he says the drug is allowing him to live an almost normal life. “I take eight pills a day, and I haven’t missed a day of work. My life hasn’t changed very much—I’m doing well on it, and we are tremendously blessed.”
Says Huff: “I don’t think our lives are measured in years, but in the number of people we touch.”
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