Living with lung cancer

September 5th, 2019
A photo of Emily Daniels, who is living with lung cancer, on a boat with her husband and children.
Emily Daniels, who is living with lung cancer, enjoys a boat ride with her husband and children. Photos courtesy of Emily Daniels.

Emily Daniels and her husband, Brian, met at the University of Colorado in Boulder about 16 years ago.

For nearly that long, they’ve been talking about going to Europe to explore splendid historical landmarks, lush countryside and culture.

This year, as their daughter, Paige, 5, is off to kindergarten and their son, Brady, 18 months, is learning about mischief, the couple headed to the French Alps and the Amalfi Coast in Italy.

Living with lung cancer: A life with purpose

“I’m living more intentional,’’ Emily said. “I’m more aware about the things that I do, and the things that I let bother us.”

“Brian and I have been together for 15 years but have never been to Europe together.  Every year we say we’re going to go and never do, but this year we’re doing it.  We know we can’t take time for granted, so amidst a busy job and the start of school, we’re just going to do it!’’

Saying yes to opportunities that bring more enjoyment to living is a dividend, in a way, of having cancer. At the age of 32, while pregnant with Brady, Emily began to have a weird feeling in her chest. A doctor ordered tests, including one to detect blood clots. The scan revealed two pulmonary embolisms and a mass in her lungs.

“I really didn’t know what he meant when he said ‘mass.’ A mass? What does that even mean?’’

A doctor told her she could have picked up a virus while traveling or it could be lymphoma or lung cancer. At the time, she was 33 weeks pregnant, and she wondered, “How could this even be happening?’’

A bronchoscopy the next morning showed lung cancer, and she was referred to an oncologist. Doctors could not determine the stage of the cancer until after she delivered Brady.

Emily said she and Brian went into shock. During the drive home, they pulled over to the side of the road. They needed a few minutes to compose themselves.

“It’s just shock and disbelief. At that moment, you don’t know what it all means. And we are having a baby, and we didn’t know what stage it was,’’ she said. “There is still a part of me that is in disbelief. You don’t really think this is happening to you.’’

She did everything she could do distract herself. She bought clothes for the baby, washed them. She talked to her boss, told her she’d continue to work at her marketing job and would return to work after the baby was born.

A leading mind in lung cancer

A few days later, she met with Dr. Ross Camidge at UCHealth University of Colorado Hospital on the Anschutz Medical Campus. Camidge is the Director of Thoracic Oncology and the Joyce Zeff Chair in Lung Cancer Research at the University of Colorado Cancer Center, and, among many other honors, in 2013, he became the first physician to receive the Hank Baskett Sr. Spirit Award, for which he was credited as being “one of the leading minds in lung cancer today.’’

Within only a few minutes of meeting Camidge, Emily felt some reassurance.

The Lung Cancer Team, just like all of the Disease Teams at the CU Cancer Center, consists of doctors and support staff across many different medical disciplines – including surgery, radiation oncology, medical oncology, pulmonology, pathology and radiology – who all choose to specialize and work together to focus on just a few cancer types, out of the hundreds of different cancers that exist. In the community, generalist approaches are far more common, sometimes with the different disciplines struggling to interact optimally because they are located in completely separate practices. In addition, Camidge’s team has been a major driver of research breakthroughs in developing new understandings and new treatments for lung and other thoracic cancers.

“Having cancer is stressful,” said Camidge. “So, we try and make everything, from the first time a person with a lung cancer diagnosis meets us, as clear and as comfortable as possible. But we do not shy away from anything, whether it’s a standard or a completely out-of-the-box approach, either.”

“Immediately, I knew that this was where I needed to be treated,’’ Emily said.

At the time, Camidge told her he did not believe that waiting a week or so before starting treatment to allow Brady to be safely delivered would “make or break’’ the situation, Emily said.

A new baby

Together, Emily and her husband, Camidge and her OB doctor decided to schedule the birth of Brady 10 days later. On a cold, snowy day in February, he was born five weeks early. He had difficulty breathing and required oxygen for 10-12 weeks. He spent a couple of weeks in the neonatal intensive care unit until his lungs further developed. Otherwise, Brady was in good shape.

Emily had an MRI on her brain. She also had a PET scan and two days later met with Camidge, who delivered more news.

Emily’s brain was clear of cancer, though the PET scan revealed cancer in her pelvis, adrenal gland and ribs. He also told her that the cancer was not curable.

“So yeah, I now know that it is incurable,’’ she says, reliving the moment. “Yeah, that it is incurable.’’

Emily Daniels, who is living with lung cancer, is photographed with her husband, Brian.
Emily Daniels and her husband, Brian Daniels.

However, a special blood test had also come back, which showed that the cancer was being driven by a specific genetic change, called an ALK gene rearrangement. Camidge assured Emily that new drugs have been developed that may not be cures, but have been very good at controlling the kind of lung cancer that Emily has for long periods of time and, also, to help with symptoms. He prescribed alectinib, four pills that she was to take in the morning and four pills to take in the evening.

The use of alectinib as the initial treatment for Emily’s cancer was pioneered in 2017 in an international study called the ALEX trial, which was co-led by Camidge.

“Compared to the previous standard for ALK rearranged lung cancer, alectinib more than halved the risk of the cancer progressing over time. So it was an obvious choice to start with for Emily,” said Camidge.

Four weeks later, a scan of Emily’s body showed that 90 percent of the disease was not visible, though she still had two little spots on her back. Brady had come home from the NICU in March, though Emily was not able to nurse him.

“They don’t know enough about these drugs to say if moms can nurse or not,’’ Emily said.

With a newborn and a 3-year-old at home, Emily never gave up hope.

Chronic disease throws curveballs

About a month later, Emily began to develop pain in her back. A chronic disease, she now knew, could throw curveballs. She wasn’t sure if her pain was a result of treatment or if something else was going on.

She returned to Camidge. The cancer in her back was progressing, so Camidge switched Emily’s medication to a different ALK inhibitor, brigatinib, but without any additional benefit. By June, with further progression of the cancer occurring in Emily’s lymph nodes and bones, Camidge began thinking outside the box at full speed.

“Emily should have been the poster girl for this kind of cancer, but her duration of benefit from the initial therapies, which should have been measured in years, was only a few months,” he said. “We re-biopsied her cancer but, using the usual tests, there was no identifiable mechanism of resistance we could identify.”

He added chemotherapy, a specific cocktail identified by Camidge back in 2011 as particularly effective in ALK positive lung cancer. The first round of chemotherapy made her sick and nauseous, but Camidge modified things to make the treatment more tolerable and it worked controlling her disease again, but only for a few months. He used focused radiation to treat individual areas in her back and in her lung, according to his principle of ‘weeding the garden’ developed in 2012 to treat a few areas of progression on a given treatment. Emily developed a burn in her esophagus from radiation, her back still hurt and she needed an injection of special cement (a kyphoplasty) to stabilize the middle of her back and make it less painful.

Molecular changes

“I was working through my bag of tricks very quickly,” Camidge said. “Emily’s cancer was just breaking every rule. Our only hope at this point was that Bob Doebele was going to pull a miracle out of his lab.”

In addition to sending Emily’s re-biopsy sample off for all the usual tests, a sample of the cancer had also been sent to Dr. Robert Doebele, a physician-scientist at the University of Colorado School of Medicine, who was able to grow the cancer cells in his laboratory. After several months of testing, Doebele was able to show that Emily’s cancer had developed a second molecular change, one that could not be detected by the standard tests. However, by working on the live cancer cells, Doebele was able to show that Emily’s cancer was now co-dependent on activation of a different pathway, one called MET, a research breakthrough he presented at the World Conference on Lung Cancer in September 2019.

In early January though, before Doebele had gone public with his breakthrough, Camidge had already adjusted Emily’s medications, adding in crizotinib, another drug used in the pharmacy for other reasons but which can function as a MET inhibitor, based on what Doebele had discovered. Scans completed March 1 and May 1 showed no signs of active cancer, providing conclusive proof of Doebele’s laboratory hypothesis.

“In the right center, the distance between a discovery on the laboratory bench and the patient who could benefit from it should be very short,” said Camidge. “Dr. Doebele and I did not know if it would work – real life is always one experiment after another – but I am so glad it did. Emily desperately needed a break.”

headshot of Dr. Ross Camidge
Dr. Ross Camidge

Emily is now on crizotinib and brigatinib.

I’m one of very few people who are on a combination of these drugs,’’ Emily said. “Camidge is always thinking outside of the box rather than just going down the typical path.”

“A lot of doctors just aren’t as creative as he is,’’ Emily said of Camidge. “That’s why we are so lucky to be at UCH. They can do the research and have the creativity to look for other solutions.’’

Camidge recognizes the same qualities in both Emily and Brian.

Staying ahead

“What is amazing to me is how these guys have so quickly gone from reacting to a medical bomb going off in their lives to proactively planning to stay ahead of things. I don’t just mean how they have adapted to dealing with every bump in the road with a smile, but how they have taken on the challenge to get out there and do what they can to help change things for the better. For themselves and for others.”

Emily’s cancer had been undetectable for several months, though a scan completed in early August shows two very small deposits of the cancer in her brain, Emily said. She has begun focused radiation for those tumors.

Emily Daniels, who is living with lung cancer, enjoys a happy moment with her husband and their children.
Emily Daniels with her husband and children.

“I’ve named them Chip and Dale, and it is time to get those pesky rodents out of there. Dr. Camidge is working on a trial for a new MET inhibitor drug that will penetrate the brain barrier, which crizotinib does not. This shows how important the research is,’’ she said.

Emily isn’t giving in to cancer. She is living a normal life. She runs up to six miles a couple times a week. She’s a full-time mom and enjoying Paige and Brady. They go to the Children’s Museum, Cheyenne Mountain Zoo in Colorado Springs and WaterWorld. The kids enjoy playing in the fountains at Union Station, going to the farmer’s market in Golden and swimming with friends. They bake cookies together, hike and have traveled to Mexico, Arizona, California and Illinois.

“If you saw me, you wouldn’t know I have lung cancer,’’ she said.

She works to raise awareness about living with lung cancer, including fundraising for research.

“It took a couple weeks to look at each other and say, ‘You know, we’re not going to sit here and feel sorry for ourselves and keep asking why,’” Brian said .

Last year, Emily organized a golf tournament that raised over $130,000 for lung cancer research. She is holding the tournament again this year. Participants may sign up for the tournament on Sept. 11, 2019 at Arrowhead Golf Course, or donors may contribute to raising money for lung cancer research by visiting www.linksforlungs.com.

“You know I want to do something meaningful. I want to make a difference,” said Emily. “I believe that we’re going to see a cure in my lifetime.”

About the author

Erin Emery is editor of UCHealth Today, a hub for medical news, inspiring patient stories and tips for healthy living. Erin spent years as a reporter for The Denver Post, Colorado Springs Gazette and Colorado Springs Sun. She was part of a team of Denver Post reporters who won the 2000 Pulitzer Prize for breaking news reporting.

Erin joined UCHealth in 2008, and she is awed by the strength of patients and their stories.