When someone hears they have stage four lung cancer, hope usually fades fast.
"Half of lung cancer patients die within the first year," Janet Freeman-Daily said. "And I'm still here."
Freeman-Daily credits her survival to a drug she's been taking through a University of Colorado Cancer Center clinical trial.
Freeman-Daily, a former Boeing engineer, was diagnosed with advanced lung cancer in 2011. She had never smoked. Lung cancer was not in her family.
"Anyone with lungs can get lung cancer," Freeman-Daily said.
She went through rounds of chemotherapy and radiation, but the cancer kept spreading.
Freeman-Daily wanted to understand exactly what was happening with the cancer. With her science and research background, she scoured the Internet for information.
"Being a science geek, my coping was to learn about my disease," Freeman-Daily said. "That was some small way I could get control back."
She learned about genomic mutation testing for tumors and enrolled in programs that classified her cancer as the ROS1 type. It's a rare condition. ROS1 is just about 2 percent of lung cancers.
Shortly thereafter, she learned about the clinical study at CU Cancer Center into Crizotinib for those with ROS1 Rearranged Lung Cancer.
That drug, Crizotinib, is showing so much promise the Food and Drug Administration has approved its use for people with non-small cell lung cancer.
"Janet has a specific sub-type of lung cancer which was was only described a few years ago, called ROS1 Rearranged Lung Cancer," Dr. Ross Camidge, Director of the Thoracic Oncology and Clinical Research Programs at the University of Colorado, said. "This drug works great for it."
Dr. Camidge says 60 to 70 percent of ROS1 lung cancer patients are benefiting from Crizotinib.
Freeman-Daily started it when she joined the CU Cancer Center clinical trial in November 2012.
For the last three years, there has been no evidence of cancer.
"The genetic abnormality in the ROS1 lung cancer is driving it," Dr. Camidge said. "It's the dictator in the cancer cell. This drug essentially puts a gag in the mouth of that dictator. Like most dictatorships, when you knock out the dictator, the rest of the country crumbles. So the cancer falls apart when you shut up the dictator."
Dr. Camidge is quick to point out this will not be a miracle drug for all lung cancer patients.
"In our clinical trials, we're not trying to find a 'one size fits all,'" Dr. Camidge said. "We're trying to find something like Cinderella's shoe that will fit perfectly on that one person. You have to personalize the treatment. We have ways of profiling patients, finding the exact kind of cancer they have, and put them in different categories. We have access to the latest drugs in clinical trials. That's how you personalize a treatment plan and maximize the opportunities for getting the cancer under control."
Because of the specific nature of cancer care as well as the in-depth trials going on at CU Cancer Center, the University of Colorado has recorded survival rates nearly four times the national average.
"My doctors at home in Seattle said 'that's your best shot,' so I joined the CU Cancer Center clinical trial," Freeman-Daily said. "For the first two months, I was here every two weeks. The next eight months, I was here every four weeks. Now, I'll return every eight weeks."
With the FDA approval of Crizotinib, Freeman-Daily could receive it at home in Seattle. However, she plans to keep returning to Colorado in order to finish out the clinical trial.
"I'll keep coming here as long as I can," Freeman-Daily said. She pays for all of the trips back and forth.
Freeman-Daily is now a huge advocate for others with lung cancer. Her Twitter page has thousands of followers (@JFreemanDaily). People all over the world follow her blog, grayconnections.net. She has also become a public speaker, educating people about lung cancer and how to attack it.
"Janet is a touchstone for thousands of people affected by lung cancer," Dr. Camidge said. "She's incredibly well educated so she can put things into context."
"My primary goal is to improve outcomes and quality of life for other lung cancer patients and part of that is giving them hope," Freeman-Daily said.
If you or someone you know is dealing with cancer, learn more about the ongoing clinical trials at CU Cancer here: http://bit.ly/1YvFP9V.