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Found 12 results

  1. This is a very good podcast about EGFR+ lung cancer featuring the always great Dr. David Carbone, courtesy of the Lung Cancer Foundation of America. https://m.youtube.com/watch?v=M4kIBpqWRC0&feature=youtu.be
  2. UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome. ORIGINAL POST: Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her. I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma. It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant. November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor. On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning. In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable. I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never. Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes. For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you!
  3. Any insights into how to control thoughts of 'Is this my last...Mother's Day, birthday, etc... Any advice on dietary changes to help with GI side effects of Tagrisso
  4. 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.
  5. October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear: “You have cancer.” I kept questioning how this could happen to me. I was a healthy, 35 year old nonsmoker, and a mom of two great children. I came to learn that you don’t have to be a smoker to get lung cancer. Honestly even if one was a smoker, would it matter? No one should have to go through this terrible journey. Soon after my diagnosis I saw a surgeon and was told that I was not a candidate for surgery, as my cancer had metastasized to the surrounding lymph nodes. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of chemo infusion, believing that if the treatment was effective that surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4. The new tumor meant surgical treatment was no longer an option, and that medicine is my only hope. At that time my husband and I realized it was time to get a second opinion, which turned out to be one of the best decisions of my life. My new oncologist tested my cancer for genetic mutations. At the time, I had no idea what he was even talking about. Then I received a call from him on a Friday afternoon stating I have the EGFR mutation. I could hear the joy in his voice. After doing some research I came to understand that this was a very good thing, and within a few days I started to take a targeted therapy called Tarceva. My quality of life is way better than I would have ever thought possible. I’m now 37 and living with stage IV lung cancer, hoping that medicine advances faster than my tumors. During my initial treatment I was bitter. I did not want to hear “you can beat this” or “you are the strongest woman I know” or “you are a fighter.” I just wanted to get through my treatment and move on with my life. As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I enjoy life more now than ever. Second, don’t sweat the small things. Living with a terminal illness helps one understand what‘s really important in life. Kateri and her family
  6. Hi everyone! I have been a survivor for close to a year now. I have NSCLC with brain mets. My LC has never produced symptoms but the brain mets sure did! A year ago i lost all touch sensation to the right side of my face, accompanied by excruciating pain that was originally diagnosed as trigeminal neuralgia. My family doc sent me to an ENT specialist who found nothing, said i needed an MRI, and there they were, brain mets and a lot of them. One was putting pressure on the trigeminal nerve root. The hunt was on for the primary and they found it in my lungs. Many small lesions. I started with 5 rounds of WBR and the day before i was to start chemo, my onc called to tell me i had the EGFR mutation (oh happy day!!) He started me on Afatinib 40 mg and i was good for the first 2 or 3 months, then WHAM hit with nasty nasty side effects. 2 wk break to let my body heal, then started again at 30mg. Im doing really well now. Chest xray is NED, CT still shows a few spots and they're much smaller. Nov 1st i go for my first brain MRI in 6 months. Im a positive cheerful person and a fierce warrior when it comes to my cancer. Learning all the ins and outs of new drugs etc.. as well as trying to learn the areas of my brain has been a bit challenging. Memory loss doesn't help with that!! I wish you ALL continued good health, and easy solutions when things arise.♡♡
  7. LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Alice T. Shaw, MD, PhD, has joined LUNGevity’s Scientific Advisory Board, a group of 20 world-renowned scientists and researchers that guides LUNGevity’s research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific strategy 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 of lung cancer survivors. LUNGevity is the only lung cancer organization with a programmatic focus on early detection and Career Development Awards. Our 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. Shaw is the Director of the Center for Thoracic Cancers and the Paula O’Keeffe Endowed Chair of Thoracic Oncology at Massachusetts General Hospital. She is also an Associate Professor of Medicine at Harvard Medical School. In addition to caring for patients with lung cancer, Dr. Shaw performs clinical and translational research. Her clinical research focuses on subsets of NSCLC that have unique driver mutations, such as EGFR, ALK, and ROS1. Her translational research focuses on understanding and making clear the mechanisms of resistance to targeted therapies; she is currently developing novel combination treatment strategies. Her research has helped to develop numerous FDA-approved targeted therapies for patients with oncogene-driven NSCLC, such as crizotinib (Xalkori®) for patients with ALK or ROS1 rearrangements. “We could not be happier that Dr. Shaw has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “She is a brilliant thinker, an innovator, and a compassionate advocate for her patients. In particular, her groundbreaking work that led to the development of Xalkori® has extended and improved the lives of many NSCLC patients. Her expertise and counsel will advance LUNGevity’s goal to increase and improve survivorship for those affected by lung cancer.” Read the full press release here.
  8. Hi - I'm joining this forum to find out more about Adenocarcinoma and Women that never smoked. My mom was diagnosed on 11/29/2016. That day changed our lives. My mother fell and broke her femur and once we rushed her to ER the doctor reviewed her x-ray and said her femur should never break that way. From there he ordered a CAT scan which showed lesions on the femur. The next response from the doctor was it didn't start there, so he ordered an upper body scan which found it in her lung (source) however it was also in her spine, and ribs. Mom has had surgery since to repair the femur but recovery is not the only obstacle. The emotions of knowing you have cancer in so many places are overwhelming. In early December they determined she had it in her brain as well. They did WBRT for 10 sessions and she didn't have any side effects until a week after, where she lost her hair in one night and her scalp became very tender. Doctors recommended Aloe Vera and Aquaphor to soothe the skin. We just applied it yesterday so we're hoping it helps. Mom was informed that she does have the EGFR mutation which allows her to have the chemo pill rather than standard chemo. We're hoping the side effects won't be as extreme as traditional chemo. Has anyone taken Gilotrif and had positive (or not so extreme effects)? Can you give me some background or suggestions? Background on Mom: Mom is only 72. Thankfully, mom is a very strong woman she has pain but tries not to complain. She was semi-active before the fall and only noticed what she thought was arthritis pain or osteo pain from aging. She hasn't lost a pound she still has an appetite and after WBRT some of the cognitive thinking and some memory patterns returned, but depression keeps creeping in from time to time. I'm confused about a few things. I read a lot on this version of cancer and it's astonishing to me that one article stated it is now the #1 cancer for women. Why hadn't I heard of this before? Why aren't women warned? We're warned not to smoke but this cancer affects those that don't smoke. What kind of warning could people that don't smoke have received? I'm devastated that my mom is going through this. We have to keep our faith in God and sometimes we won't understand until later. Any suggestions about anything helps. Thanks for reading!!
  9. According to my profile, it seems I joined the forum in April 2016 and then promptly forgot about it. As I was trying to register yesterday it said my email was already in use so knew I must have already joined. Finally was able to change my password so I'm back. I'm a 77 year old female dx with Stage 4 NSCLC in December 2015. I live in a small town in northern Michigan with my husband of 58 years. We have two children and two grandchildren.
  10. 44 yr old man here. Former smoker. Diagnosed on 8/4/2016. Some spread into bones. ONC put me on Tarceva and after only 10 days showed visible results of a reduction. I'm generally looking to meet other Tarceva users and find out more. Thanks all...
  11. I am going to be setting up a booth to bring awareness and raise funds for Lung Cancer at local fairs and festivals. My booth will provide information, bandies and a donation bucket. I have acquired a small list of venues to set up my booth but would like to hear from everyone on any ideas they may have on any other settings to get our message out. I live in Mobile, AL. Thank you for any suggestions.
  12. My mother was diagnosed about 2 years ago with Stage IIIb / IV NSCLC (one site w/pleural effusion). The tumor is inoperable due to location (and no radiation option either). She tested positive for the EGFR mutation and has been on Tarceva (after chemo - Alimta, Carboplatin, Avastin) for just over one year. Now the cancer is growing, and they tested for the T790 mutation, likely to be present once resistance to Tarceva shows. However, not only did they find the EGFR and T790 mutations, but they now see the KRAS mutation, which is highly unusual. The KRAS and EGFR are considered to be mutually exclusive. I'm interested to know if anyone has encountered this? We're getting her into a study for the T790, but not certain about options to address the KRAS mutation.
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