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My husband was diagnosed July 8th, 2021 with stage IV NSCLC. We attend appointments together in person or via phone. My first goal is to provide what he needs when he needs it which includes his mental health. It is imperative our knowledge is based on the most current information. My second goal is to become knowledgeable about his specific type of EGFR mutation which is why it’s imperative to be knowledgeable on his specific mutation to understand his treatment options better. My husband consistently informs me he’s unaware of the type. His doctor is very diligent and responsive. He could of simply forgotten or wants to protect me so I don’t Dr. Google everything. (Let’s face it we all Dr Google medical information all the time How do I find out? Do I ask my husband for permission to look at his MyChart? Do I ask at the next consult? Do I leave it alone and avoid upsetting him?
For the past 11 years, I’ve helped treat lung cancer patients as an RN in a cardiothoracic practice. Then last October, I developed a bad cough that lasted over a month. It was cold season, and my co-workers and I thought it might be pneumonia or even bronchitis. No one suspected it could be lung cancer, since I’m a nonsmoker and haven’t been exposed to common risk factors like asbestos, radon, or pollution. I had a chest ray taken, which showed fluid around my right lung. The tests of the fluid didn’t uncover anything extraordinary. I didn’t look sick, but I felt fatigued and at times, I had difficulty breathing. A few days later, I had a CT scan, which supported the pneumonia diagnosis, but it also showed a thickening on my chest wall. The doctors drained the fluid and tested it twice. Both times, the results came back negative for cancer cells. This didn’t completely rule out the possibility, but it gave us reasons to be hopeful. I started taking antibiotics and steroids, which were prescribed by a pulmonologist. But the second CT scan did not show any improvement. My first surgery was scheduled for late January. The doctors thought I had an infection and that they’d be able to clean it out. But during surgery, they discovered growths in my lung that had expanded into my chest wall. The hospital lab confirmed that it was lung cancer. My boss, cardiothoracic surgeon Carmine Frumiento, and my colleague, Danielle George, a longtime friend and physician assistant who I work with every day, had to give me, my husband, and my family the heartbreaking news that I have advanced lung cancer. It sounded so surreal that at first, I thought I was dreaming. I have a 6-year old daughter and a 2-year old son. All of the sudden, I went from being a care provider to being a patient. I had the surgery, and then later that week, I traveled to Massachusetts General Hospital to meet with some of the best specialists in the country. Danielle traveled to Boston with me and my husband, Chris. Before we left, Danielle and Dr. Frumiento helped us prepare a list of questions to ask the doctors at Mass. General. The doctors at MGH recommended starting a new targeted therapy without chemo or radiation. The results have been very promising on patients with my genetic mutation. But since the medication is so new, my insurance would not pay for it unless I tried an older treatment first. In order for her insurance to approve the new treatment, I would have to progress on the old treatment, or suffer from intolerable side effects. It felt like I was on an emotional roller-coaster. Fortunately, my colleagues helped me appeal the insurance company’s decision, and we won. I still work as a nurse, but I’ve cut down to just mornings, since I get very tired by the afternoon. I’m very grateful for the support of my work friends, who have become like extended family. They’ve helped to make sure I’m getting the best care. I realize that not all patients have those strong connections, and how important it is to advocate for yourself. I’ve been fortunate to have incredible support from my family, friends, and community. They’ve helped with everything from meals to child care to raising funds to help pay for my medical expenses. And my family was selected as the beneficiary of the Celebration of Courage Co-ed Hockey Tournament earlier this month. My husband has played in the tournament for many years to help support and raise funds for families affected by cancer. Now, our family is affected by cancer. It is likely that my cancer will never go away, but I have been told that the genetic mutation cannot be passed down to my children. The goal is to turn my cancer into a manageable chronic disease that I can live with until better treatments are available. I hope my story will raise awareness that lung cancer can happen to anyone, even young nonsmokers. It’s a fact I never fully realized myself, until I was diagnosed. There is so much blame and stigma surrounding lung cancer. I want to help raise awareness about the resources that are available for anyone who is diagnosed.
Alice Shaw, MD, PhD, is a pioneer in the field of targeted therapies for lung cancer—treatments designed to target specific gene mutations that are present in the cells of some patients. Her work was instrumental in earning FDA approval for three targeted therapies for patients with the ALK mutation: crizotinib, ceritinib, and alectinib. She recently presented the results of a critical clinical trial that suggest alectinib could replace crizotinib as the initial treatment for ALK-positive patients. In addition to conducting groundbreaking research, Dr. Shaw is a celebrated thoracic oncologist at Massachusetts General Hospital and Harvard Medical School who primarily treats patients with lung cancer. Dr. Shaw recently spoke with LUNGevity about the changes in the field of targeted therapies and her advice for patients facing a lung cancer diagnosis. LUNGevity Foundation: How has the field of targeted therapies changed over the past decade? Alice Shaw: When I entered the field more than a decade ago, we only had one targeted therapy option and that was for patients with the EGFR mutation. Because this mutation is only found in 10%-15% of patients with lung cancer in this country, the vast majority of our patients only had chemotherapy as an option. But since then, numerous targeted therapies have been developed for patients with many different types of genetic alterations. This has resulted in many more options for our patients, and it has transformed the way we treat lung cancer. These targeted treatments are more effective and better tolerated than standard chemotherapy and, as a result, are improving the quality of life for patients. LF: What is the greatest obstacle to successfully treating lung cancer with targeted therapies? AS: The biggest issue is drug resistance. Targeted therapies typically work for a year or two, and then the cancer figures out a new way to grow. This is called drug resistance, and it is the most common reason a patient comes off a targeted therapy drug. There are numerous research groups, including mine, that are working on understanding drug resistance. Once we get a handle on how the cancer is developing resistance, we can work to find a drug or combination of drugs that can overcome that type of drug resistance. LF: How do you anticipate the field of targeted therapies changing over the next decade? AS: Over the next decade, we’re going to see more efforts focused on upfront treatment and preventing the development of resistance. Right now, we are developing lines of drugs that are typically given sequentially—once the cancer becomes resistant to the first drug, the second one is given, and so on. The drugs that we are developing now are actually more effective and often safer for patients than the older generation of drugs. We’ve already started moving these newer drugs into the front-line setting, including alectinib for ALK-positive lung cancer and osimertinib for EGFR-mutant lung cancer. In addition, combination approaches may also move into the front-line setting. These combinations could include two targeted therapies, which may be more effective than a single targeted therapy, or multimodality strategies that incorporate highly potent targeted therapies to maximally reduce tumor burden and focused radiation to eradicate any residual sites of disease. These residual sites of disease may harbor the seeds of resistance, so targeting these sites may be particularly effective in preventing the development of resistance. Finally, over the next decade, I think we will be using more and more liquid biopsies, the sampling of circulating DNA shed from cancers. These liquid biopsies may help detect the first signs of resistance and may help us better tailor our targeted therapies to each patient. LF: What advice do you have for patients who are newly diagnosed with advanced-stage lung cancer? AS: I recommend that all patients with newly diagnosed advanced-stage lung cancer undergo multiplex molecular testing and PDL1 testing. While EGFR, ALK, and ROS1 are the best studied of the molecular targets, there are many other important targets for which we have highly active targeted therapies—for example, BRAF, MET, RET, and NTRK1. I would also recommend that all patients consider participating in a clinical trial because it is the only way we have to bring new discoveries to patients and it is a great way for patients to access the latest cutting-edge treatments. Finally, I would also suggest that patients get involved with advocacy and research organizations such as LUNGevity Foundation. LUNGevity is an amazing resource for patients and their families and also helps fund critical research into new treatments for lung cancer. Many patients and oncologists participate in LUNGevity’s Breathe Deep walks and other events, which are so important to raising awareness and helping to connect all of us fighting against lung cancer. (Dr. Shaw is a member of LUNGevity Foundation’s Scientific Advisory Board. She is also Director of the Center for Thoracic Cancers at Massachusetts General Hospital and an Associate Professor of Medicine at Harvard Medical School.) This blog was originally published in the LUNGevity Experts blog on February 6, 2018.