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Patient Stories: John Ryan
John Ryan is among the many patients who have benefitted from anti-PD-1 therapy.
Ryan, 71, began experiencing symptoms in 2013 when he coughed up a small amount of blood. The husband and father of eight thought it was strange, but with no pain or other symptoms he was stunned to learn he had the most advanced stage of a common form of lung cancer known as non-small cell lung cancer. The cancer had already spread to a rib.
There are few diagnoses worse than late stage lung cancer. The cancer kills more people than any other type of cancer, and few patients survive once it has spread. At this stage, the cancer is treatment resistant, responding for a brief time to chemotherapy or cancer-gene-targeted therapies, but almost always resurging even stronger.
Medically speaking, Ryan’s diagnosis was Stage 4 non-small cell adenocarcinoma of the lung. “One of my sons was graduating from college, and my daughter was about to leave for a study abroad. I wondered if I would live long enough to see my son graduate or to welcome my daughter back home,” Ryan recalls.
For a time, chemotherapy worked, but the treatment came at great physical cost, and these side effects were worsening. The simplest tasks became difficult. His body was weakening, and worse, he learned his cancer was no longer responding. Genetic testing of his tumor did not reveal any mutations that would make him a candidate for targeted therapies. It seemed he was out of options, until his doctor suggested he go to the Johns Hopkins Kimmel Cancer Center in Baltimore and meet with lung cancer expert Julie Brahmer.
Brahmer was one of the lead investigators on an experimental clinical study of anti-PD-1 therapy in a variety of advanced cancers. Ryan’s form of lung cancer was among the cancers that showed unprecedented responses.
“Before I began treatment, I struggled to sit at my kitchen table,” says Ryan. “After just four treatments, the tumor shrunk by 65 percent and I felt like a human being again.” A few more treatments and Ryan’s rapidly growing lung cancer was nearly gone. The cancer that spread to his rib was eliminated. His only side effect? Some minor skin irritations he compared to a mosquito bite.
Ryan is not an isolated case. About one quarter of lung cancer patients in the Johns Hopkins immunology studies have responded to the treatment. The numbers are even higher for melanoma and kidney cancer patients.
Anti-PD-1 is not the first checkpoint blockade therapy, but it is the first to work beyond melanoma in as many as 14 other cancer types, and that’s the pivotal difference that has excited the cancer world.
With Ryan’s cancer stable—no longer shrinking but not growing either—Brahmer has decided to stop anti-PD-1 treatment. “We think that over time the immune system creates a memory. The T-cell remembers how to attack the cancer and stop the cancer from shielding itself from the immune cells. We think the immune system can keep the cancer under control now, even without treatment,” says Brahmer.
If Ryan’s cancer begins to grow, she will start therapy again. Other patients whose tumors began to grow again after anti-PD-1 treatment was stopped have responded with treatment that was reinitiated. It’s all part of the learning curve.
Ryan continues his regular trips from his home near Middleburg, Va., to the Kimmel Cancer Center to have his cancer monitored. He also participates in a Stand Up To Cancer-funded study providing blood samples that help researchers understand more about how immune checkpoint blockade therapy works against cancer. Not every patient whose immune cells express PD-1 or whose tumor cells express PD-L1 respond to immune therapy. Patients like Ryan are helping investigators solve those mysteries and leading them to ways to help more patients.
“I feel like this is about more than just me,” says Ryan. “Immune therapy saved my life, and I want to bring this message of hope to others. I know how fortunate I was to have this wonderful team of doctors and nurses at Johns Hopkins. They are my heroes,” he says. “Two years ago, in a very short period of time, I went from feeling fine to being in serious trouble. I thought I might have only months to live and that I would miss so many important moments in my children’s lives. Time was critical, and I was fortunate to get in the right hands quickly.”
Today Ryan says, he feels better than he has in years. He recently provided around-the-clock logistical support as a crew chief to his son as he participated in a grueling 100-mile ultra-marathon through the Vermont mountains. “My friends and family were worried when I told them I planned to do this. They were shocked by how much energy I had.”
He is also an advocate, testifying before the FDA about his experience and working with the Lung Cancer Alliance to lobby for additional funding for lung cancer clinical trials.
Read a press release from the team’s 2012 publication in the New England Journal of Medicine demonstrating that immune therapy showed success in patients with non-small cell lung cancer, melanoma and kidney cancer.
Read a press release from the team’s 2015 publication in the New England Journal of Medicine demonstrating immunotherapy increased the lifespan of patients with squamous non-small cell lung cancer.