If there’s one thing patients, advocates, activists, and medical professionals in the lung cancer space want you to know, it’s this: Anyone with lungs can get lung cancer.
Amanda Nerstad, Vice President of the patient advocacy organization ALK Positive, was diagnosed with stage 4 lung cancer in 2016. Like many patients diagnosed with lung cancer, Nerstad was not a smoker, and never suspected that she could be at risk. When she first got her diagnosis, Nerstad was told she had two weeks to nine months to live — until a genomic test told her she had ALK, a different form of the disease.
“That’s when I found out I have the genetic mutation of a positive, and so it completely changes our treatment plan,” Nerstad said. She now takes a targeted therapy pill twice daily that keeps the cancer at bay. “And so that two weeks to nine months has now turned into five and a half years living with stage IV lung cancer.”
New lease on life fuels activism
Nerstad has used her new lease on life to become a patient advocate for others like her. Her activism started with the search for more information and more community. She said she and her husband attended their first lung cancer conference in 2017 with Lungevity, a lung cancer research foundation, where she learned a lot.
“I had no idea that it was the number one cancer killer in the United States, with the least amount of funding,” Nerstad said. “So, that is when my husband and I came home and we decided that we were gonna get more active in the lung cancer community.”
Another vital source of information and support was Facebook, Nerstad said, where she found the online support group that would eventually become ALK Positive.
“It was more than just a support group,” she said. “I learned a lot of information about what’s coming down the pipeline in our future. And through the support group we created a board and then the board decided to partner up with Lungevity, and that gave us access to their advisory board.” She explained that with the help of Lungevity, ALK Positive was awarded $600,000 in the first year for three grants for ALK research. “And those grants are actually up and running and doing quite well now,” she added. “Since then, we’ve raised just over 7 million for research for ALK-positive lung cancer.”
Meeting patient needs
ALK Positive is a patient-led research organization, meaning that unlike traditional cancer or medical research, it is funded and directed based on what actual patients say they need, rather than by pharmaceutical companies or other funds. One of the benefits of patient-led research is that it helps improve not just quantity of life, but also quality of life.
“Quality of life is just as important as quantity of life, to me personally,” Nerstad said. “We also have a clinical trials committee that works with other pharmaceutical companies and biotechs with their clinical trials team to help lend information from a patient perspective.”
“For me personally, I was first put on a targeted therapy pill that just made me really sick all the time,” Nerstad explained. “And although it was keeping my scan stable, I hated my new normal. and I remember looking at my doctor when I just felt terrible and he was saying, ‘You know, I’ve got stable scans, but how are you actually feeling?’”
Nerstad said even though, from a scientific perspective, her condition was improving, she didn’t like her “new normal.”
“I’m sick all the time. I’m nauseous and I have no energy, but I’m also trying to be a mom and wife and keep up with my kids and still be that teacher’s helper that I wanna be,” she said. “And that’s when he realized that I needed to go on a different medicine to help change those side effects. And thankfully, I got a second opinion and they agreed. And so I switched to a different targeted therapy pill and it was a complete game-changer. I felt normal again.”
The research ALK Positive and other patient-led organizations have helped fund is helping the development of more game-changing treatments and therapies that Nerstad said she and the rest of the lung cancer community are excited to see come to light.
“We’ve got a lot of things that you hear some buzz about within the lung cancer community,” Nerstad said. “There’s a new therapy that’s done by Nuvalent coming out that I’m very excited about,” she notes. “There’s also some new ALK vaccines to hopefully turn this terminal disease into a chronic one.” Nerstad said she never thought she’d be a part of the lung cancer community, and neither did anyone else, “but we are a special group that all works together to find our cure.”
She said, “We all do our best to stay positive. For me personally, I look to my faith and thank God for our blessings every day. I think it’s really important for those with stage IV lung cancer to continue making great memories and try not to sweat the small stuff and keep moving forward with a cure.”