In 2003, Kentucky native Geri McDowell pursued medical help out of state after experiencing a prolonged gastrointestinal illness that her local doctors couldn’t explain. Her ultimate diagnosis: neuroendocrine cancer in her GI tract.
Neuroendocrine tumors are relatively rare, afflicting about 8,000 Americans a year. The neuroendocrine system comprises cells from both the nervous system and endocrine system, and this system regulates the physiological processes of the human body. Neuroendocrine tumors begin in the hormone-producing cells of this system, and they are frequently found in the lungs or GI tract.
McDowell underwent surgery to remove the mass. Afterward, she came home and life returned to normal – until five years later, when she noticed her unusual GI symptoms returning and sought medical advice again.
The cancer had recurred, this time with metastasis to her liver. She was sent back to Kentucky with instructions to find an oncologist who could help her manage her disease.
“They just told me, well, there’s no treatment and no cure,” she said. “The tumors I have in the liver, they’re inoperable.”
McDowell chose the UK Markey Cancer Center for her care. At the time, Markey did not have an oncologist who specialized in neuroendocrine cancers. But when Lowell Anthony, MD, arrived in 2012, McDowell transferred into his care. With regular Sandostatin® injections, her tumors remained fairly stable and she maintained a normal life.
However, neuroendocrine tumors wreak havoc on a patient’s hormones, leading to serious damage in other areas of the body. In McDowell’s case, her tumors produced too much serotonin. Excess serotonin in the body can cause a build-up of scar tissue in major organs, a fibrosis that Anthony describes as almost “wood-like.”
McDowell’s tricuspid heart valve began to fail, and she underwent open-heart surgery followed by the installation of a pacemaker and stent. But she struggled to recover. Then the mitral valve in her heart also began to fail, requiring her to be on oxygen 24/7.
Best chance for survival
In the meantime, Anthony doggedly searched for a clinical trial that suited McDowell, knowing that it was likely her best chance for survival. She finally qualified for one of his trials in early 2015, just as her health was reaching an all-time low.
“At one point during her ordeal, she was on her deathbed,” Anthony said. “Her husband called in her pastor, friends and family. We were doing everything we could to keep her with us, to get her on that trial.”
McDowell hung on, and began taking the trial medication. She slowly grew stronger over the following months, building up her stamina and gaining weight. Her shortness of breath dissipated, and she weaned herself off of the supplemental oxygen. More than a year after beginning the clinical trial, McDowell is feeling the strongest and healthiest she has in many years.
Anthony affectionately calls her his “zebra,” noting that much like every zebra has its own distinctive striping, McDowell’s extraordinary reaction to her treatment is also unique and special.
While the term “clinical trial” can sound scary to someone who has never participated, McDowell is happy to dispel any myths surrounding trial participation and educate others on her experience.
“It’s always scary to think about somebody asking you if you want to be on a clinical trial,” she said. “But I trusted Dr. Anthony with anything, and when he thought it was the best thing, I said, ‘Absolutely!’ And even if it didn’t help me, it might help someone else.”
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