Lung Cancer Survivor Finds Help Through Clinical Trial

Craig Uthe - Stories of Hope

By Stacy Simon

Craig Uthe does not work in the medical field, but he has long had a passion for medical research. Even before he was diagnosed with lung cancer, Uthe read close to 3,000 news and research articles every year about general health and medicine topics. He read about everything from the risks of macular degeneration to treatments for multiple sclerosis – anything he thought might help anyone he knew. It never occurred to Uthe that his love of medical research would one day help him manage his own health.

No risk factors

In 2010, Uthe, 53, started hearing a crackling in his lungs. He didn’t suspect lung cancer, and neither did his doctor. After all, Uthe had no risk factors. He had never smoked, he had not been exposed to radon or secondhand smoke, he didn’t work around cancer-causing materials, and he had no family history of lung cancer. His doctor ruled out an infection and prescribed an anti-fungal drug. The crackling seemed to clear up. But a few months later, Uthe noticed that when he bent over to tie his shoes or get something out of the freezer, he could feel fluid spilling up into his windpipe. He went back to the doctor, who ordered an x-ray.

The x-ray showed something suspicious and Uthe was sent to see a lung specialist, who ordered a CT scan. It showed a tumor. A biopsy confirmed it was non-small cell lung cancer. Uthe thought, “It can’t be that bad. I eat healthy and I live a good life. I hoped they’d caught it early. I was optimistic it had not spread everywhere.” He was scheduled for surgery at a hospital near his home in New Jersey.

But Uthe wasn’t satisfied with this treatment plan. The surgeon in New Jersey wasn’t in his health insurance network and he’d be paying $15,000 out of pocket. He also still didn’t know any specifics about his cancer, such as the subtype or stage. He decided to get a second opinion. After doing some research, he found a lung cancer specialist in Philadelphia who was in his insurance network. The new doctor looked at Uthe’s CT scan and interpreted it differently. He told Uthe there was cancer in every lobe of both lungs, that it was stage IV, and that surgery wouldn’t help. He said Uthe needed systemic treatment designed to reach all the cells in his body – because the cancer had already spread.

Molecular testing

When he learned that he had lung cancer, Uthe says he went into panic mode. He stopped eating and sleeping normally and he lost 10 pounds. To cope, he began channeling his passion for medical research into finding out all he could about lung cancer, especially the types more likely to occur in non-smokers. He read about molecular genetic testing and asked his doctor in Philadelphia about it.

Molecular testing looks for specific gene changes (mutations) in the cancer cells that are helping them grow. Having one of these mutations, and finding out what it is through testing, could mean targeted drugs might help treat the cancer. Uthe was tested for the most common “targetable” mutations, including changes in the KRAS, EGFR, and ALK genes. But test after test turned up negative.

Then Uthe’s doctor told him about a lung cancer expert at Massachusetts General Hospital in Boston who was testing for a new mutation in a gene called ROS1. He made an appointment and drove to Boston to meet Dr. Alice Shaw. “I was instantly struck by a person who is professional and brilliant and kind, incredibly kind,” said Uthe. Dr. Shaw told Uthe he fit the profile for a ROS1 mutation, which affects only about 1% to 2% of people with non-small cell lung cancer. Uthe was younger than the average lung cancer patient, he had never smoked, and he had already tested negative for several other mutations. Uthe began to believe it could just be possible he had the ROS1 mutation.

“My whole point of going up there and pursuing this even if no clinical treatment was available, was that I wanted to know the name of my enemy, to know the cancer a little better. I believe that understanding helps acceptance of fatal illness,” said Uthe.

Clinical trial

Ten days after Uthe met with Dr. Shaw, he learned that he’d tested positive for the ROS1 mutation and that he was eligible to enroll in a clinical trial that was testing the targeted therapy drug crizotinib. He became one of the first dozen people in the trial of crizotinib for ROS1-driven lung cancer. By the second day of the trial, Uthe says his cancer symptoms disappeared. The fluid backing up into his windpipe was gone. Over the next 4 years, Uthe’s tumors shrank to about half their original size. In scans, he says they look about 80% less dense – they look like skeletons.

He also found out about the American Cancer Society Hope Lodge program and got a room at the facility in Worcester, Mass. A Hope Lodge community offers free, home-like accommodations for cancer patients and their caregivers whose best treatment options are away from home. He began staying there during his frequent trips to Boston for clinical trial treatment and testing.

He plans to stay there next month when he undergoes more tests and has surgery to remove a part of his lung where the tumor has started to grow again. He says it’s been a long journey facing bad news at every turn until he found the one doctor in the world who was leading the clinical research in a drug for the condition he turned out to have.

“This whole adventure is mind blowing,” said Uthe. “I am not religious, but I can see how some people would consider this the hand of God.”

Heroes and rock stars

"Patients in clinical trials are the heroes. They are going into battle trying something not tried before. They could be worse off and could even die. They follow the call out of necessity and some of them survive and some don't and that's the nature of being a hero."

Craig Uthe

These days Uthe focuses his medical research on targeted therapy for late stage lung cancer. He shares the information he finds with other patients and survivors through online forums.

“As an online patient advocate I combine my passion for online with medical research,” said Uthe. “I love helping patients find doctors and treatments that might be promising to them. I think this is my calling – this is what I really want to be doing.”

He also attends medical conferences including the American Society of Clinical Oncology (ASCO) Annual Meeting. “If I had a life to live over again,” he said, “it would be great to be a lung cancer oncologist.”

“It was a wonderful experience to be able to go to ASCO. It was a sight to behold,” said Uthe. “Patients in clinical trials are the heroes. They are going into battle trying something not tried before. They could be worse off and could even die. They follow the call out of necessity and some of them survive and some don’t and that’s the nature of being a hero. The researchers and oncologists are the musicians creating music to dance to – like Alice Shaw and others who are downright rock stars.”

The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

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