{"id":26272,"date":"2019-09-05T09:21:28","date_gmt":"2019-09-05T15:21:28","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=26272"},"modified":"2022-08-18T07:20:32","modified_gmt":"2022-08-18T13:20:32","slug":"living-with-lung-cancer","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/living-with-lung-cancer\/","title":{"rendered":"Living with lung cancer"},"content":{"rendered":"
<\/div>
\"A
Emily Daniels, who is living with lung cancer, enjoys a boat ride with her husband and children. Photos courtesy of Emily Daniels.<\/figcaption><\/figure>\n

Emily Daniels and her husband, Brian, met at the University of Colorado in Boulder about 16 years ago.<\/p>\n

For nearly that long, they\u2019ve been talking about going to Europe to explore splendid historical landmarks, lush countryside and culture.<\/p>\n

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.<\/p>\n

Living with lung cancer: A life with purpose<\/h3>\n

\u201cI\u2019m living more intentional,\u2019\u2019 Emily said. \u201cI\u2019m more aware about the things that I do, and the things that I let bother us.\u201d<\/p>\n

\u201cBrian and I have been together for 15 years but have never been to Europe together.\u00a0 Every year we say we’re going to go and never do, but this year we’re doing it.\u00a0 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!\u2019\u2019<\/p>\n

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.<\/p>\n

\u201cI really didn\u2019t know what he meant when he said \u2018mass.\u2019 A mass? What does that even mean?\u2019\u2019<\/p>\n

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, \u201cHow could this even be happening?\u2019\u2019<\/p>\n

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.<\/p>\n

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.<\/p>\n

\u201cIt\u2019s just shock and disbelief. At that moment, you don\u2019t know what it all means. And we are having a baby, and we didn\u2019t know what stage it was,\u2019\u2019 she said. \u201cThere is still a part of me that is in disbelief. You don\u2019t really think this is happening to you.\u2019\u2019<\/p>\n

She did everything she could do distract herself. She bought clothes for the baby, washed them. She talked to her boss, told her she\u2019d continue to work at her marketing job and would return to work after the baby was born.<\/p>\n

A leading mind in lung cancer<\/h3>\n

A few days later, she met with Dr. Ross Camidge at UCHealth University of Colorado Hospital<\/a> on the Anschutz Medical Campus<\/a>. Camidge is the Director of Thoracic Oncology and the Joyce Zeff Chair in Lung Cancer Research at the University of Colorado Cancer Center<\/a>, 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 \u201cone of the leading minds in lung cancer today.\u2019\u2019<\/p>\n

Within only a few minutes of meeting Camidge, Emily felt some reassurance.<\/p>\n

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 \u2013 including surgery, radiation oncology, medical oncology, pulmonology, pathology and radiology \u2013 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\u2019s team has been a major driver of research breakthroughs in developing new understandings and new treatments for lung and other thoracic cancers.<\/p>\n

\u201cHaving cancer is stressful,\u201d said Camidge. \u201cSo, 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\u2019s a standard or a completely out-of-the-box approach, either.\u201d<\/p>\n

\u201cImmediately, I knew that this was where I needed to be treated,\u2019\u2019 Emily said.<\/p>\n

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 \u201cmake or break\u2019\u2019 the situation, Emily said.<\/p>\n

A new baby<\/h3>\n

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.<\/p>\n

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

Emily\u2019s 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.<\/p>\n

\u201cSo yeah, I now know that it is incurable,\u2019\u2019 she says, reliving the moment. \u201cYeah, that it is incurable.\u2019\u2019<\/p>\n

\"Emily
Emily Daniels and her husband, Brian Daniels.<\/figcaption><\/figure>\n

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.<\/p>\n

The use of alectinib as the initial treatment for Emily\u2019s cancer was pioneered in 2017 in an international study called the ALEX trial, which was co-led by Camidge.<\/p>\n

\u201cCompared 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,\u201d said Camidge.<\/p>\n

Four weeks later, a scan of Emily\u2019s 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.<\/p>\n

\u201cThey don\u2019t know enough about these drugs to say if moms can nurse or not,\u2019\u2019 Emily said.<\/p>\n

With a newborn and a 3-year-old at home, Emily never gave up hope.<\/p>\n

Chronic disease throws curveballs<\/h3>\n

About a month later, Emily began to develop pain in her back. A chronic disease, she now knew, could throw curveballs. She wasn\u2019t sure if her pain was a result of treatment or if something else was going on.<\/p>\n

She returned to Camidge. The cancer in her back was progressing, so Camidge switched Emily\u2019s medication to a different ALK inhibitor, brigatinib, but without any additional benefit. By June, with further progression of the cancer occurring in Emily\u2019s lymph nodes and bones, Camidge began thinking outside the box at full speed.<\/p>\n

\u201cEmily 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,\u201d he said. \u201cWe re-biopsied her cancer but, using the usual tests, there was no identifiable mechanism of resistance we could identify.\u201d<\/p>\n

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 \u2018weeding the garden\u2019 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.<\/p>\n

Molecular changes<\/h3>\n

\u201cI was working through my bag of tricks very quickly,\u201d Camidge said. \u201cEmily\u2019s 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.\u201d<\/p>\n

In addition to sending Emily\u2019s 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\u2019s 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\u2019s 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.<\/p>\n

In early January though, before Doebele had gone public with his breakthrough, Camidge had already adjusted Emily\u2019s 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\u2019s laboratory hypothesis.<\/p>\n

\u201cIn the right center, the distance between a discovery on the laboratory bench and the patient who could benefit from it should be very short,\u201d said Camidge. \u201cDr. 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.\u201d<\/p>\n

\"headshot
Dr. Ross Camidge<\/figcaption><\/figure>\n

Emily is now on crizotinib and brigatinib.<\/p>\n

I’m one of very few people who are on a combination of these drugs,\u2019\u2019 Emily said. \u201cCamidge is always thinking outside of the box rather than just going down the typical path.\u201d<\/p>\n

\u201cA lot of doctors just aren\u2019t as creative as he is,\u2019\u2019 Emily said of Camidge. \u201cThat\u2019s why we are so lucky to be at UCH. They can do the research and have the creativity to look for other solutions.\u2019\u2019<\/p>\n

Camidge recognizes the same qualities in both Emily and Brian.<\/p>\n

Staying ahead<\/h3>\n

\u201cWhat 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\u2019t 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.\u201d<\/p>\n

Emily\u2019s 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.<\/p>\n

\"Emily
Emily Daniels with her husband and children.<\/figcaption><\/figure>\n

\u201cI’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,\u2019\u2019 she said.<\/p>\n

Emily isn\u2019t giving in to cancer. She is living a normal life. She runs up to six miles a couple times a week. She\u2019s a full-time mom and enjoying Paige and Brady. They go to the Children\u2019s Museum, Cheyenne Mountain Zoo in Colorado Springs and WaterWorld. The kids enjoy playing in the fountains at Union Station, going to the farmer\u2019s market in Golden and swimming with friends. They bake cookies together, hike and have traveled to Mexico, Arizona, California and Illinois.<\/p>\n

\u201cIf you saw me, you wouldn\u2019t know I have lung cancer,\u2019\u2019 she said.<\/p>\n

She works to raise awareness about living with lung cancer, including fundraising for research.<\/p>\n

\u201cIt took a couple weeks to look at each other and say, \u2018You know, we\u2019re not going to sit here and feel sorry for ourselves and keep asking why,’\u201d Brian said<\/span>\u00a0<\/span>.<\/p>\n

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.<\/p>\n

\u201cYou know I want to do something meaningful. I want to make a difference,\u201d said Emily. \u201cI believe that we\u2019re going to see a cure in my lifetime.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Emily Daniels and her husband, Brian, met at the University of Colorado in Boulder about 16 years ago. For nearly that long, they\u2019ve 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, […]<\/p>\n","protected":false},"author":20,"featured_media":26273,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[28,241,3658,49,167,6836,4670,4781,890,30,263],"class_list":["post-26272","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-cancer-care-oncology","tag-cancer-services","tag-cancer-support-and-nurse-navigators","tag-cancer-treatment","tag-clinical-trials","tag-lung-and-thoracic-cancer","tag-lung-tumor-testing-and-clinical-trials","tag-research-in-health-care","tag-uchealth","tag-university-of-colorado-cancer-center","tag-university-of-colorado-hospital"],"acf":[],"yoast_head":"\nLiving with lung cancer: Live with purpose - UCHealth Today<\/title>\n<meta name=\"description\" content=\"Emily Daniels found out she had terminal lung cancer while she was pregnant with her son, Brady. 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