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Found 15 results

  1. I was diagnosed in July 2013 at age 67 with NSCLC-adenocarcinoma, with mets to my liver. At the time, there were only a few mutations that were known; my testing revealed that I had none of them (ALF, EGFR, KRAS negative). I was started on chemotherapy - carboplatin, Avastin, and Alimta. After 16 months, a new tumor was detected and I was declared chemo-resistant. At that time, there were no FDA-approved immunotherapy treatments, so I was shown several clinical trials to review and discuss with my oncologist. The trial that we selected was a phase 1 combination of MEDI4736 (now known as durvalumab or Imfinzi) and tremelimumab. Unfortunately (as there was significant reduction in tumor size), I was able to stay in that trial for only 7 months due to side effects. Within a few months, I was accepted into another trial (phase 1, oral drug code named PBF-509), which I have been in since January 2016 with no side effects other than fatigue, and stable since January 2017.
  2. Here is the weekly clip report: Cure “Lung Cancer Care Becoming More Personalized and Trials will Too” https://www.curetoday.com/articles/lung-cancer-care-becoming-more-personalized-and-trials-will-too Cancer Therapy Advisor “Lurbinectedin Receives FDA Orphan Drug Status for Recurrent Small-Cell Lung Cancer” https://www.cancertherapyadvisor.com/lung-cancer/lung-cancer-nsclc-lurbinecedin-fda-oprhan-drug-status-treatment/article/786009/ U.S. News – Health “What to Know about Lung Cancer Screening Guidelines” https://www.nga.org/governors/addresses/ Healio “Minimally Invasive Surgery Effective for Early-Stage Lung Cancer” https://www.healio.com/hematology-oncology/lung-cancer/news/in-the-journals/{924a7fc0-fcda-4ffb-bad7-4f2cb101c1db}/minimally-invasive-surgery-effective-for-early-stage-lung-cancer Onc Live “Dr. Witsuba on Biomarkers for Immunotherapy in Lung Cancer” https://www.onclive.com/onclive-tv/dr-wistuba-on-biomarkers-for-immunotherapy-in-lung-cancer Drug Target Review “Reducing NOVA1 Helps prevents Tumour Growth in Lung Cancer” https://www.drugtargetreview.com/news/34089/reducing-nova1-lung-cancer/ Science Daily “Finally, a Potential New Approach against KRAS-Driven Lung Cancer” https://www.sciencedaily.com/releases/2018/08/180809093458.htm Oncology Nurse Advisor “New PDL1 Inhibitors for Non-small Cell Lung Cancer: Focus on Pembrolizumab” https://www.oncologynurseadvisor.com/lung-cancer/pdl1-inhibitors-for-nsclc-focus-on-pembrolizumab/article/787627/
  3. 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.
  4. Here is the weekly clip report: U.S. News & World Report "From the 'Big C' to Cancer" https://health.usnews.com/health-care/patient-advice/articles/2018-03-21/from-the-big-c-to-cancer Healio “Lower-Limb Arterial Thrombosis May Be Marker of Cancer” https://www.healio.com/cardiac-vascular-intervention/peripheral/news/online/{f342b55f-87eb-4edc-a0eb-608633079467}/lower-limb-arterial-thrombosis-may-be-marker-of-cancer Medscape “How to Improve Diversification of Patients with Cancer in Clinical Trials” https://www.medscape.com/viewarticle/894210 Oncology Nursing News "New Treatments for Lesser-Known Targets in NSCLC Are Emerging" http://www.oncnursingnews.com/web-exclusives/new-treatments-for-lesserknown-targets-in-nsclc-are-emerging Smithsonian Magazine “Could Immunotherapy Lead the Way to Fighting Cancer?” https://www.smithsonianmag.com/innovation/immunotherapy-lead-way-fighting-cancer-180968392/ Medscape “From ALK to T790M: The Role of Liquid Biopsy in Lung Cancer” https://www.medscape.com/viewarticle/894215 Medical Xpress “RNA-Based Therapeutic Inhibits a Metabolic Pathway in Tumor-Initiating Lung Cancer Cells” https://medicalxpress.com/news/2018-03-rna-based-therapeutic-inhibits-metabolic-pathway.html Bloomberg “Robots Could Replace Surgeons in the Battle Against Cancer” https://www.bloomberg.com/news/features/2018-03-23/robots-could-replace-surgeons-in-the-battle-against-cancer
  5. Hi, SMAs, Here is the weekly clip report: Healio “Targeted Radiation Reduces Mortality for Early-Stage Lung Cancer” https://www.healio.com/hematology-oncology/lung-cancer/news/in-the-journals/{ea2da7d0-cbee-4aba-bba7-5028dde05d69}/targeted-radiation-reduces-mortality-for-early-stage-lung-cancer OncLive “ALK Inhibitors Continue to Reshape Treatment in NSCLC” http://www.onclive.com/web-exclusives/alk-inhibitors-continue-to-reshape-treatment-in-nsclc U.S. News & World Report “Are More People Dying of Cancer?” https://health.usnews.com/health-care/patient-advice/articles/2018-02-20/are-more-people-dying-of-cancer Women’s Health “’How I Told My Siblings I Had Lung Cancer’” https://www.womenshealthmag.com/health/a18377542/lung-cancer-diagnosis/ OncLive “Clinical Trials Highlight Biomarker Progress in Lung Cancer” http://www.onclive.com/web-exclusives/clinical-trials-highlight-biomarker-progress-in-lung-cancer Clinical Oncology “Imfinzi Granted New Indication to Reduce Risk for NSCLC Progression” http://www.clinicaloncology.com/FDA-Watch/Article/02-18/Imfinzi-Granted-New-Indication-to-Reduce-Risk-for-NSCLC-Progression/47007 OncLive “Larotrectinib Update Shows Durable Responses in TRK-Positive Cancers” http://www.onclive.com/web-exclusives/larotrectinib-update-shows-durable-responses-in-trkpositive-cancers Cancer Therapy Advisor “Phase 2 Trial of AZD1775 for Squamous Cell Lung Cancer” https://www.cancertherapyadvisor.com/lung-cancer/azd1775-squamous-cell-lung-cancer-phase-2-trial/article/746115/ BBC News “Mini-Tumors’ Created to Battle Cancer” http://www.bbc.com/news/health-43154878 Medical Xpress “An Under-the-Radar Immune Cell Shows Potential in Fight Against Cancer” https://medicalxpress.com/news/2018-02-under-the-radar-immune-cell-potential-cancer.html GenomeWeb “New Extracellular Particle Could Prove Useful for Cancer Diagnosis, Monitoring” https://www.genomeweb.com/proteomics-protein-research/new-extracellular-particle-could-prove-useful-cancer-diagnosis
  6. 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.
  7. 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?
  8. 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
  9. 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.
  10. 10 years ago I was diagnosed with NSCLC and was told that with an operation and treatment, I had 3-5 years to live . After an upper left lobe resection followed by systemic chemo I went into remission and enjoyed 2 1/2 years of precious time. Then, a checkup revealed that I had 17 mets to my liver and a couple of “hot spots” in my lungs. At that time I joined the already very full ranks of stage 4 NSCLC patients. The day I was to begin another course of chemo, my oncologist recommended that I try a clinical trial, so I did. My attitude then and my attitude now is “What have I got to lose?”. That clinical trial knocked all the cancer away and gave me more time, but the nature of NSCLC is sneaky and persistent. Things flared up again after about a year and a half and for several years I was put on different cocktails of drugs that gradually were being approved by the FDA. During that time I continued to teach school and I lived a full and productive life. There were some significant bumps along the way, but I’m still here. Flashing forward to the present, I am now on my 5th clinical trial which is successfully knocking back my cancer and giving me more time. Participating in clinical trials have kept me going in this chess match. They have put cancer in check several times and are key to bridging the gap from treatment to treatment. I have seen tremendous advances during these 10 years and I feel the cure is just around the corner. I will continue to take advantage of clinical trials because I’m just too busy with life. Also, I want more time. Time for family and friends. Time to see grandchildren being born and grow up. I just want time. Clinical trials have made that possible.
  11. Last year, after seventeen months on Tarceva, I got the news. My lung cancer was off it's diet and was starting to get fat again. It was time to try a different treatment. But what was left? Seeing my doctor's scrunched-up face while he stared at the floor said it all: He had run out of hope that anything would work. Chemo and Avastin had kept my cancer at bay before Tarceva, and together these three drugs had given me three extra years of life. But they had all eventually run their course. What was left? The cancer was in all lobes of my lungs and had spread to my bones, so radiation wasn't an option. Luckily, I had a secret weapon in my arsenal. I read. I found a blog by a person with remarkably similar circumstances to my own, including starting Tarceva at almost exactly the same time, and even including having radiation to our hips at about the same time. Craig and I became friends, and have been in close contact ever since. It was difficult to watch when the Tarceva stopped working for Craig. Fortunately, his oncologist was on top of the research, and referred him to a clinical trial for AZD9291. This is a drug specifically targeted for people who are post-Tarceva, and whose EGFR mutation has further mutated to be T790 positive. The drug was wildly successful for Craig, but that is a story for him to tell. The good news for me is that, three months after he started this drug, I was in need of a new treatment option, and knew about this drug that my own oncologist didn't even know was available through a clinical trial. I got all the contact info from Craig, and immediately began efforts to get into this clinical trial. This was far more dramatic than I had hoped. The clinical trial was closing in one week, and the clinical trial coordinator was going on vacation at the end of the day that I found out. I had less than eight hours to get eight years of medical records faxed from two hospitals and two clinics if I was going to get into this trial! Bureaucracy, people on vacations, other people not answering their phones, and the need for a sense of urgency that medical records people rarely encounter all added to the challenge. I spent the entire day working the phones and emailing people to light a fire under anyone and everyone who could assist in getting these records for me. At the end of the day, at 5:30, the clinical trial coordinator emailed to tell me that I had an appointment the following Tuesday for my interview to be admitted to the program. She hit the Send button on that email, and then started her vacation. Just made it! The part I haven't mentioned is that I live in Portland, and that the trial is a thousand miles from my home, in San Diego. My wife Genevieve and I flew to that first appointment, both excited and apprehensive about what I needed to do to be accepted. I had already made clear that I was ready to move to San Diego, do back flips, and turn into a Wookie if necessary to get into this trial. Was this interview about motivation? Nah. It turns out this appointment was mostly about paperwork... AND letting me know that they would need to run a few tests to determine if I was a fit for the program. The "few tests" turned out to be a hefty amount of blood and urine samples, a series of EKG's, an echocardiogram, an eye exam, and a needle biopsy. The important one was the biopsy, which would determine whether I had the right genetic mutation. This involved getting me nice and groggy, getting onto a CT table, taking images, then inserting the needle as close to the tumor as they could get. Then they took another image, got a little closer to the tumor, and repeated until they got the needed biopsy. This involved a couple of sleepy hours and absolutely no pain. An EKG sounds more like the jolt that brought Frankenstein to life than the passive monitoring that goes on. Sticky vinyl circles with metal tips, slightly larger than a quarter, were placed in 12 locations on my chest, arms and legs. Leads were attached, and my heart activity was monitored. The first time I did this, the protocol was to get readings once an hour, and then once every other hour, over a twelve-hour period, then come back the next morning for one last measurement, so they could get a 24-hour set of readings. The only pain involved was the removal of chest hair when the sticky circles were pulled off. The echocardiogram is pretty simple. I laid on my side with my shirt off while a tech put some jelly on what looked like a microphone, and pressed it against my ribs while he looked at the images. The first time they did this I looked at the image, and asked the tech if it was a boy or a girl. He smirked. I guess he's heard that one before. I wore a hospital gown open in the front, and they gave me a blanket when I got a little cold. Twice I have fallen asleep while they were testing me. I plan to do it again. It's a nice quiet environment for a nap. The eye exam is just like any other eye exam. It was probably time to get them checked again anyway. Years ago I had a chemo port, and my doctor gave me "port cream" (lidocaine) to use before the needle poke. Since then, I have used that cream every time I have blood drawn. I put the cream on an hour before I'm going to get poked, and cover it with a 4-inch clear plastic bandage. I look away when they insert the needle. Often I can't even tell when the needle has gone in. After initially getting accepted into the trial, I had to come back every three weeks for an appointment with the doctor, a new CT scan, blood and urine samples, and an EKG (only one each time). The schedule thinned to once every six weeks after the first six months. Every three months i have another nap/echocardiogram. I've mentioned everything about this so far other than the treatment itself. Here is the treatment: I take a pill once a day. That's it. The side effects have been very minor. Dry skin and hair, occasional split skin around my fingernails, and a few mouth sores. This has been easier than Tarceva. That makes sense, because the cutting edge drugs are becoming better targeted with each new generation. The results: That's the exciting part! In the first six weeks, my cancer shrunk by two-thirds! Since then, almost a year now, the cancer has remained stable! I'm a big believer in clinical trials. After lung cancer treatment had remained pretty much unchanged for half a century, other than better management of side effects, the new treatments coming out are having spectacular results. Sometimes those results even end up with the words we all are waiting to hear: "No evidence of disease." I plan on hanging around long enough to hear those words. Would I go into another clinical trial if/when this drug stops working? Where do I sign up?
  12. HI All, Here is information on two new clinical trials that are recruiting. Please feel free to share this link to make others aware! Currently Recruiting for these two Atezolizumab Trials: IMpower 110 (GO29431):A Comparative Study of Atezolizumab With Cisplatin or Carboplatin + Pemetrexed in Patients With Stage IV Non-Squamous Non-Small Cell Lung Cancer (NSCLC). This randomized, open-label study will evaluate the safety and efficacy of Atezolizumab compared with treatment with a platinum-based regimen (carboplatin or cisplatin per investigator discretion) + pemetrexed in PD-L1-selected, chemotherapy-naive patients with Stage IV NSCLC. IMpower 111 (GO29432):A Study of Atezolizumab Compared With Gemcitabine + Cisplatin or Carboplatin in Patients With Stage IV Squamous Non-Small Cell Lung Cancer. This randomized, open-label study is designed to evaluate and compare the safety and efficacy of Atezolizumab compared with treatment with gemcitabine + cisplatin or carboplatin in patients with chemotherapy-naive, Stage IV squamous non-small cell lung cancer (NSCLC). For information about the trials online: http://www.antipdl1clinicaltrials.com/hcp/antiPDL1_clinical_trial_info/lung-cancer To Contact the Genentech Trial Information Support Line: Phone: 1-888-662-6728 (US and Canada only) Hours of Operation: 6am - 3pm PST Monday – Friday Email Address: global.rochegenentechtrials@roche.com -- Arin Assero Senior Director, Global Stakeholder Relations Cullari Communications Global 310.963.0874 aassero@cullarigroup.com www.cullariglobal.com
  13. 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
  14. Watch 10 year lung cancer survivor, Linnea, talk about clinical trials https://www.youtube.com/watch?v=FKEW1CZbt4w
  15. REPOSTED: The Phase 3 ENSPIRIT clinical trial in NSCLC recently passed an important clinical milestone and is continuing to enroll patients globally. The trial is evaluating the potential of custirsen to improve survival outcomes in patients with advanced or metastatic NSCLC who have progressed after initial chemotherapy treatment has failed. Patients will be randomly selected to receive a second-line standard of care, docetaxel, with or without custirsen therapy. For more information about the trial, speak with your doctor or visit https://clinicaltrials.gov/ct2/show/NCT01630733.
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