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Found 7 results

  1. My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.” But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s. As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day-to-day experience. I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors, and with tolerable side effects, allowed me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn. However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and still miss a lot. One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo. Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis. In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again. Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but it was important for me to try to find alternate ways to manage symptoms, both physical and emotional. However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down. Initially, I struggled to find camaraderie with other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support. My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.” If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide are cutting-edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations. Since my diagnosis, life has been a roller-coaster ride of living with uncertainty and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.
  2. Edward Garon, MD, of UCLA joins the LUNGevity Foundation Scientific Advisory Board Dr. Garon brings expertise in clinical trials and other key areas to LUNGevity’s research program FOR IMMEDIATE RELEASE Media Contact: Austin Courtney acourtney@susandavis.com (202) 414-0791 WASHINGTON, DC (January 13, 2017) – LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Edward Garon, MD, has joined LUNGevity’s Scientific Advisory Board, a group of 19 world-renowned scientists and researchers who guide LUNGevity’s scientific strategy and research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific approach and ensuring that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives for lung cancer survivors. LUNGevity is the only lung cancer organization with programmatic focuses on early detection and Career Development Awards. LUNGevity-funded researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The research program is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. Dr. Garon is the Director of the Thoracic Oncology Program at the Jonsson Comprehensive Cancer Center at UCLA and Associate Professor of Medicine in the Division of Hematology-Oncology at David Geffen School of Medicine at UCLA. He has been the principal investigator of peer-reviewed grants from various funding organizations, including the National Cancer Institute. His focus is on clinical research and biomarker development. He has served as the principal investigator on national and international phase I, II, and III clinical trials. Among these are trials that have led to the approval of drugs for the treatment of non-small cell lung cancer, including ramucirumab (Cyramza®) and the immunotherapy pembrolizumab (Keytruda®). “We are honored that Dr. Garon has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “His expertise and advice will be invaluable to furthering LUNGevity’s goal to improve outcomes for lung cancer patients.” Click here to read the complete press release on LUNGevity.org.
  3. Hello everyone. I am about to begin a clinical trail with the use of Nivolumab along with the introduction of Ipilimumab. I have Stage 4 adenocarcinoma which has spread to my bones and brain. Does anyone have any input on this trial?
  4. Looking for good resources to keep me up to date on recent advances in treatment of lung cancer. I know access to the latest is what will make the difference; I have found the daily news updates at this site to be quite useful http://news.cancerconnect.com/lung-cancer-overview/ would like to know what other sources people have found useful Thanks Maltman
  5. On August 17, LUNGevity hosted a webinar with Dr. Julie Brahmer to discuss recent clinical trials in immunotherapy drugs. These trials have stimulated a lot of discussion in the lung cancer community. The webinar was moderated by LUNGevity's Vice President of Support & Surivivorship, Katie Brown. Dr. Julie Brahmer is an immunotherapy expert at Johns Hopkins and a member of LUNGevity Scientific Advisory Board. Dr. Brahmer is an expert in the use of immunotherapies to treat lung cancer. She has spearheaded numerous clinical trials for the immunotherapy of lung cancer, including the pioneering trial that led to the approval of nivolumab in the second-line setting for advanced-stage lung cancer. Dr. Brahmer is the director of the Thoracic Oncology Program at the Johns Hopkins Kimmel Cancer Center. She is also a member of LUNGevity’s Scientific Advisory Board. To listen to the webinar and to read the follow-up blog written by LUNGevity's Director of Science Communications, Dr. Upal Basu Roy, please click here.
  6. Find lung cancer clinical trials that match your individual situation. The LUNGevity Clinical Trial Finder makes it easier to find available clinical trials by type of lung cancer and geographic location, and provides information and links to the medical centers at which these studies are taking place. http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/clinical-trial-finder
  7. Watch 10 year lung cancer survivor, Linnea, talk about clinical trials https://www.youtube.com/watch?v=FKEW1CZbt4w
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