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Ben Van Horn - Patient Story

"I came to Fox Chase to get the help of physicians who had first-hand experience with rare cancers."

— Ben Van Horn

Clinical trials at institutions like Fox Chase Cancer Center often provide access to life-saving treatments before they receive FDA approval and become widely available. In my case, my doctors and I attribute my long-term survival to my participation in a clinical study at Fox Chase. 

In 1999, at age 53, I was a busy school superintendent, my wife was employed part-time, and my two adult children were living independently. I had two-thirds of my stomach removed, and I was subsequently diagnosed with a gastrointestinal stromal tumor. At that time, little was known about this disease and there was no known cure; the two-year survival rate was zero.

Cancer changed my life and my wife’s life dramatically. I was diagnosed with an incurable, rare, high-grade cancer. The prognosis, which was confirmed by a second opinion, was that I had 12 to 18 months to live. Realizing there may be some additional surgeries in the interim, I knew I couldn’t fulfill the demands of my job as a school superintendent. So, my wife and I chose to retire at the age of 53, 10 years earlier than we had anticipated.

As predicted, my cancer recurred one year later. I came to Fox Chase to get the help of physicians who had firsthand experience with rare cancers. Dr. John Hoffman, an oncologic surgeon specializing in gastrointestinal cancers, performed my second surgery, a partial resection of the small intestine. During surgery, Dr. Hoffman discovered that the tumor had metastasized throughout my abdomen. He referred me to a colleague at the University of Pennsylvania who was using an investigative surgical technique on these tumors at the time. Unfortunately, six months after that surgery, several more tumors were found including two in my liver. 

Surgery was no longer an option, and my diagnosis should have been terminal. However, one week before my follow-up appointment, my surgeon at the University of Pennsylvania learned of a drug trial under way at Fox Chase that might be helpful to me. I was incredibly appreciative of the collaboration between physicians at both institutions. They were more concerned about my well-being rather than trying to keep me at their institution.

I went into Fox Chase for an evaluation with Dr. Margaret von Mehren, a medical oncologist at Fox Chase. After reviewing my medical history, she determined I would be a candidate for the trial and I enrolled. Fox Chase was one of only four research hospitals in the world conducting this drug trial. I started the oral chemotherapy now known as Gleevec

In six months, I experienced an 84 percent reduction in my tumor. And in one year, I was NED—no evidence of disease! I was elated with the results. Although my cancer was not cured, I could start treating it as a chronic disease. Dr. von Mehren and her team monitored my cancer and drug treatment for the next 11 years, until the side effects necessitated a change in treatment. I then started taking Sutent, another drug administered orally, which effectively suppressed the growth of my tumors for three years. I’m now taking the oral chemotherapy Stivarga at 25 percent strength.

Fighting cancer has been an ongoing journey, and I continue to rely on the expertise offered by Fox Chase. In 2013, after being diagnosed with a new cancer, adenocarcinoma (stomach cancer), I was referred to Dr. Jeffrey Farma, an oncologic surgeon at Fox Chase. Dr. Farma and his team performed a total gastrectomy, which involved removing the remainder of my stomach and reconstructing with my small intestine so I could digest food. It was my fourth abdominal surgery. Although it was complicated, the care I received was exemplary. Amazingly, I’m now living without a stomach.

In 2014, I returned to Fox Chase for another procedure. This time, I had my gall bladder removed, but it was not from cancer. Once again, Dr. Farma and Dr. Hoffman took care of me. Because of my history, it too was a complicated surgery. I recovered from surgery and began the new year in 2015 as a 16-year cancer survivor. My last CT scan in 2017 showed some renewed cancer activity in a lymph node in my pelvic area, and I have a follow-up CT scan scheduled.

I’m now 72 and have been fully retired for 18 years. Within the last year, my wife and I moved into a continuing-care, senior living community where we receive quality dining, a variety of socialization opportunities, and numerous opportunities for exercising the body.

I live a simple, pleasant life—not at all as full and active as most others my age. There’s no denying the toll that five major surgeries and 17 years of chemotherapy have taken on my body and lifestyle. I once stood at more than six feet, one inch tall, but now I stand at five feet, 10 inches tall. I’m a 126-pound man living without a stomach, which requires that I sleep sitting up in a hospital bed. The primary assignment of my day is to consume 2,000 calories—four modest meals a day. Diminished physical strength and stamina have significantly curtailed my opportunities for recreation and travel. Nevertheless, I have hobbies, including genealogy and playing the fiddle, a wonderful family, and friends to make my days worth living.

My story is not complete without mentioning the help and sacrifices made by my caregiver, my wife, Harriette. One shared sacrifice is worthy of mention: the financial cost of cancer drugs. Each year, we pay approximately $6,000 for my chemotherapy pills, which essentially take the place of an ocean cruise or a few weeks at the shore.

Facing a rare and life-threatening cancer can be very sobering and stressful. But this stress can be reduced considerably with the knowledge that you have the country’s best surgeons and researchers coming to your aid. It’s reassuring to know that the medical staff at Fox Chase has firsthand experience treating your specific cancer. From the surgeons to the nurses, Fox Chase has been an essential partner in my medical journey—my “Still Alive Tour.”

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