Shortly after Ryan Kuper and his girlfriend moved to their new home in Glendale, California, Ryan started experiencing occasional shooting pains in his lower abdomen.
A few weeks later, while visiting his family in Omaha, Nebraska for Thanksgiving, he consulted his father, a retired physician, about the discomfort.
Dr. Kuper examined Ryan but was unable to determine what might be amiss, and suggested he receive a more detailed examination upon his return.
The next week, based on his otherwise overall health, his Urgent Care physician surmised that the pain might be a muscular issue and he was given some ibuprofen and told to get some rest. For a while the pain subsided.
But on January 11, Ryan returned to that same physician with renewed pain and with an increasing deterioration of his ability to breath. This time, the doctor heard very different lung sounds and the chest x-ray he ordered revealed a sizeable build-up of fluid (pleural effusion) in his right lung.
Ryan, just 38, was a vegetarian, had never smoked, and had just started his new job. But a diagnosis of cancer is rarely expected and never welcomed. And like too many others, on January 17, 2011, Ryan heard those dreaded words, “You have cancer.”
Given Ryan’s young age, and the fact that he had never smoked, his local oncologist, Dr. Raul Mena surmised his cancer might be the result of a rare genetic mutation. Biopsies from his lung and lymph tumors were tested, but multiple analyses showed no presence of the genetic mutation that Dr. Mena thought he might have.
This unfortunately eliminated using targeted agents for Ryan’s cancer. Perplexed, Dr. Mena reached out to a lung cancer specialist at Cedars-Sinai Medical Center, who responded that there really was nothing he could do for him. (Ryan’s cancer had already spread, and there were so many tumors and lesions they couldn’t be removed surgically.) He recommended Ryan try standard therapy.
After much research, Ryan’s girlfriend (now wife) suggested visiting Rational Therapeutics (now Nagourney Cancer Institute). Ryan asked Dr. Mena about getting a chemo drug sensitivity test done there, and was encouraged to do so.
On February 8, Ryan, his father and his aunt, traveled to Long Beach to meet with Dr. Nagourney. Since Ryan had accumulated more fluid in his right lung, Dr. Nagourney was able to aspirate a significant amount of cloudy yellow fluid – plenty for a full EVA-PCD functional profile, especially since it was full of cancer cells.
During Ryan’s consultation, Dr. Nagourney learned about the negative results of the genetic tests and the lack of a family history with cancer.
But when the EVA-PCD results were ready less than seven days later, he realized that something didn’t add up. Ryan’s profile revealed that his cancer was very sensitive to the targeted agent, crizotinib.
Dr. Nagourney called Dr. Mena to confirm that the genetic mutation tests were negative. Dr. Mena confirmed this information. But because the assay results were clearly indicating that the drug developed for an ALK mutation would kill Ryan’s cancer, there seemed to be a disconnect. Also, without the mutation, Ryan couldn’t even get the drug. Anywhere – in the US, Canada, Europe, Asia - nowhere!
Not willing to let the mystery remain unsolved, Dr. Nagourney persisted. He asked Ryan if he could submit more fluid for testing. A second EVA-PCD assay revealed the same results as the first.
Knowing that Ryan would respond to crizotinib, he contacted Sai-Hong Ou, MD, of UC Irvine Medical Center, one of the original investigators of the agent’s use in patients with the ALK gene mutation. Given that the EVA-PCD results were consistent and knowing that lab tests, any lab test, has room for statistical error, Dr. Nagourney spoke with Dr. Ou about retesting Ryan for the gene mutation.
Dr Ou sent Ryan’s remaining tissue samples to the laboratory at Massachusetts General Hospital for another genetic test. This test proved that Ryan did indeed have the ALK gene mutation. The earlier tests had been incorrect.
Throughout this time, Ryan’s condition was continuing to worsen, and unable to meet the requirements for the crizotinib clinical trial, he was put on a regimen of cisplatin plus gemcitabine, which had shown some activity in his EVA-PCD functional profile.
The hope was that this combo would slow the disease’s progression, or buy enough time until Ryan met the trial’s requirements, and this was exactly what happened.
After three months of chemotherapy, he finally qualified for the clinical trial featuring the drug his EVA-PCD assay had shown would be the most effective in killing his cancer cells.
And effective, it has been. Within the first weeks of the trial, Ryan was feeling better and began physical activity once again.
Remarkably, almost exactly on the first anniversary of his diagnosis, he was given word of his cancer’s remission. He continues to take his pills every day as maintenance therapy, and continues to show improvement.
“Dr. Nagourney played an undeniably crucial role in my treatment. He was so tenacious in finding the answers and a treatment that would truly help me. He and the staff at Rational Therapeutics gave me ‘the white glove treatment,’ and I am forever grateful for their care.”
Puzzled, Ryan added, “I really don’t understand why this test isn’t part of everyone’s treatment plan.“
We couldn’t agree more. Click on the video thumbnail below to see Ryan and Dr. Nagourney explain Ryan's story on local televsion.