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Found 21 results

  1. I am stage IV and was taking Lumakras for about a month until early April, when liver lab results went out of control. Oncologist had me stop. She may have me restart after labs, but this is what I am wondering -- has anyone else been on Lumakras (first scan did show progress eliminating tumors) had this happen to them? If so, how was it handled? (I have the G12C KRAS mutation.)
  2. This article was posted by a member of the LUNGevity EGFR Resisters Lung Cancer Patients Group. Not only is neratinib being tested as a targeted therapy for EGFR Exon 18 mutations but also HER and HER2 tumor mutations and for other cancers. Go science! https://www.targetedonc.com/view/neratinib-is-effective-against-egfr-exon-18-mutations-in-nsclc
  3. My oncologist put me on Votrient, which is a targeted therapy drug, which treats only renal cell carcinoma. It almost completely cleared my lungs of all of my tumors (I was down to only one 6mm "nodule"). It worked in only seven weeks!! Yes, it was amazing because I had numerous masses in my lungs, prior to taking this drug, which were 2-3 cm each. However, the major side effect I couldn't get under control, with the help of my oncology nurse and my GP, was high blood pressure. I went off of Votrient for 45 days and let my body take a break when my blood pressure became completely out of control. Now they are having me take the other targeted therapy drug for RCC and it is Inlyta. Unfortunately, I am already experiencing high blood pressure. This is even after increasing my normal Bp medication. My question is has anyone experienced high blood pressure with these drugs or other targeted therapy drugs, and overcome the high blood pressure side effect? If so, I'd love to hear how you were able to manage your blood pressure while on them.
  4. 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.
  5. “I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”. These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there. I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed. The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too. My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure. Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything. The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona. After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place. When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer. Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
  6. 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
  7. I've seen a lot of change in my life. TV -- 3 broadcast channels to hundreds of cable and satellite channels to streaming watch on demand. Music -- from a 9 volt AM transistor radio to thousands of songs on my smart phone. Telephone -- from 5 families sharing a "party line" to a video chat with my granddaughter. I could go on and on. But most significant to me are the advances in treating lung cancer discovered and fielded in the last 14 years. My diagnosis was a near death sentence. Today, there are so many more options with effective treatments for the newly diagnosed. This Forbes article does a wonderful job of explaining the remarkable advances in treatments that are available for those newly diagnosed with lung cancer. Once our most effective and reliable treatment, hope, is slowing giving way to methods that provide significant life after diagnosis. Spread the word... and.... Stay the course. Tom
  8. Here is the weekly clip report: WRC-TV “Exhibitors Guide: Full List of Exhibitors at the 2018 Health and Fitness Expo” https://www.nbcwashington.com/news/health/Exhibitors-Guide-Full-List-Exhibitors-Health-and-Fitness-Expo-474441813.html Immuno-Oncology News “Bristol-Myers, Nektar Developing Cancer Therapy to Be Used with Checkpoint Inhibitors” https://immuno-oncologynews.com/2018/02/26/bristol-myers-squibb-nektar-cancer-immunotherapy-checkpoint-inhibitors/ Color.com – Blog/Podcast “Adam Klein, Winner of 2016 Survivor, on Becoming a Leading Lung Cancer Advocate” https://blog.color.com/adam-klein-winner-of-2016-survivor-on-becoming-a-leading-lung-cancer-advocate-f2ca8f48415 OncLive “Expert Highlights Immunotherapy Use in Stage III NSCLC” http://www.onclive.com/web-exclusives/expert-highlights-immunotherapy-use-in-stage-iii-nsclc OncLive “Dr. Gieschen on the Side Effects of Radiation Therapy in NSCLC” http://www.onclive.com/onclive-tv/dr-gieschen-on-the-side-effects-of-radiation-therapy-in-nsclc The Baltimore Sun “Orioles Notes: Lee Expected to Miss Four Weeks; Hays to Get Break with Bum Shoulder” http://www.baltimoresun.com/sports/orioles/blog/bs-sp-orioles-notes-20180301-story.html Genome Web “As Cancer Immunotherapy Evolves, Challenges Compound for Diagnostic Development” https://www.genomeweb.com/molecular-diagnostics/cancer-immunotherapy-evolves-challenges-compound-diagnostic-development Cure Today “Taking Action to Address Lung Cancer Across the US” https://www.curetoday.com/articles/taking-action-to-address-lung-cancer-across-the-us Virginia Business "50 Most Influential Virginians - Lynne Doughtie" http://www.virginiabusiness.com/news/article/50-most-influential-virginians-2018
  9. 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.
  10. 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
  11. I was diagnosed with Stage IV Lung Cancer on September 19, 2016. The doctor told us that it was inoperable and radiation was not an option. It felt as though I’d been punched in the stomach. I immediately began thinking of my children and my wife, Lisa, and that my time here on Earth was very limited. I had no words that day, only utter despair. As the initial shock wore off, and the option of getting selected for a trial medication was offered, I realized that I may have a chance at fighting cancer and not letting cancer "fight" me. I’m ALK positive, so I was able to start taking a targeted therapy drug. It was shortly after the diagnosis and when I had no choice but to accept this as my fate, that I made the decision to fight this disease by becoming proactive in my care. I have always been a man of strong faith, and God has not failed me yet. Sometimes it takes something so big to appreciate waking up each day to your family and the people you love! I pray to God every night to give me another day. I was looking for an organization that focused on spreading awareness about lung cancer and funding research. I also liked that LUNGevity provided so many different types of support. We created a team for Breathe Deep Boca Raton, a 5K walk and run that raised lung cancer awareness and funds for LUNGevity for research and support programs. My wife and I are very active in our community, so we started reaching out to people to encourage them to come out and support the event. We advertised in local restaurants and reached out to local schools and youth recreation programs, and got some things going. My kids and I used social media to spread the word and I followed up with phone calls to remind people to show up. A friend of mine is in a band, so we asked them to come out and play live music at the event. Parts of the event are more somber, when we’re honoring the people we’ve lost to this disease, but other parts are uplifting and hopeful when we talk about research and the progress being made. I think the impact in the community is two-fold. First, it helps to raise awareness about lung cancer. I felt so strongly about making sure people realize that lung cancer isn’t only for smoker. And it also brings awareness about LUNGevity and that this a specific organization to help people impacted by lung cancer. I’m grateful for the research and medication and for the support of my family, friends, and the community. I hope the fundraising goes toward research to help find more targeted therapies. We need to fund research for treatment options that increase survival rates and help contain and manage the disease. I’m ALK positive, and there are treatments for that specific mutation, but I’d like them to find treatments for other mutations as well. I still look at the glass half full, because today, I am still here. My loving wife and children stand with me every day in this long, tedious, sometimes unbearable cancer journey. Through my positive energy and prayers we stay strong, and in September 2017, we celebrated my one-year cancerversary!
  12. Here is the weekly clip report: USA Today “Bristol-Myers Squibb Claims ‘Breakthrough’ Lung Cancer Treatment” https://www.usatoday.com/story/money/2018/02/05/bristol-myers-squibb-claims-breakthrough-lung-cancer-treatment/306433002/ Forbes “Genprex Launch IPO for Trials of New Gene Therapy Lung Cancer Treatment” https://www.forbes.com/sites/rodnturner/2018/02/05/genprex-launch-ipo-for-trials-of-new-gene-therapy-lung-cancer-treatment/#167f00d449fd Cure Today “Not All Small-Cell Lung Cancer Treatment is Equal” https://www.curetoday.com/articles/not-all-small-cell-lung-cancer-treatment-is-equal Targeted Oncology “Gray Sheds Light on Considerations When Treating NSCLC with Immunotherapy” http://www.targetedonc.com/news/gray-sheds-light-on-considerations-when-treating-nsclc-with-immunotherapy Oncology Nurse Advisor “Lung Cancer Screening: Risk-Targeting Approach vs NLST Eligibility Criteria” https://www.oncologynurseadvisor.com/lung-cancer/risk-targeting-approach-vs-national-lung-screening-trial-eligibility-criteria/article/741924/ OncLive “Dr. Erhunmwunsee on Factors of Disparity in Lung Cancer Treatment” http://www.onclive.com/onclive-tv/dr-erhunmwunsee-on-factors-of-disparity-in-lung-cancer-treatment News Medical “LUNGevity Foundation Launches Initiative to Promote Stronger Adherence to Lung Cancer Screening” https://www.news-medical.net/news/20180207/LUNGevity-Foundation-launches-initiative-to-promote-stronger-adherence-to-lung-cancer-screening.aspx Healio “ASCO Panel: Precision Medicine in Practice Can Be Challenging” https://www.healio.com/hematology-oncology/practice-management/news/online/{29cffa20-1d9b-41e1-84e1-804341997d73}/asco-panel-precision-medicine-in-practice-can-be-challenging The Daily Telescope “Dr. Julie Brahmer, M.D., M.Sc. Is Named Professional of the Year by the International Assoc. of Who’s Who” http://dailytelescope.com/pr/dr-julie-r-brahmer-m-d-m-sc-is-named-professional-of-the-year-by-the-international-assoc-of-whoaes-who/66790 UCLA Health “A Double Dose of Promising Lung Cancer Findings” https://www.uclahealth.org/u-magazine/body.cfm?id=17&action=detail&ref=1137 NPR “What Not to Say to the Terminally Ill: ‘Everything Happens for a Reason’” https://www.npr.org/sections/health-shots/2018/02/08/583774624/what-not-to-say-to-the-terminally-ill-everything-happens-for-a-reason
  13. Here is the weekly clip report: PR Newswire “American College of Chest Physicians Publishes New Lung Cancer Screening Guidelines” https://www.prnewswire.com/news-releases/american-college-of-chest-physicians-publishes-new-lung-cancer-screening-guidelines-300589650.html The ASCO Post “Durvalumab Takes a Giant Leap into Stage III NSCLC” http://www.ascopost.com/issues/january-25-2018/durvalumab-takes-a-giant-leap-into-stage-iii-nsclc/ EurekAlert! “New Radiation Techniques Could Improve Quality of Life for Lung Cancer Patients” https://www.eurekalert.org/pub_releases/2018-01/lhri-nrt012918.php Medical Xpress “Expert Panel Issues New Guidelines for Lung Cancer Molecular Testing” https://medicalxpress.com/news/2018-01-expert-panel-issues-guidelines-lung.html KETV-TV “Radon Awareness Month: Lung Cancer Survivor Thinks Radon Caused It” http://www.ketv.com/article/radon-awareness-month-lung-cancer-survivor-thinks-radon-caused-it/15893580 Oncology Nursing News “Socioeconomic Disparity in Lung Cancer Care” http://www.oncnursingnews.com/web-exclusives/socioeconomic-disparity-in-lung-cancer-care OncLive “Treatment of Locally Advanced NSCLC” http://www.onclive.com/insights/multimodal-advanced-nsclc/treatment-of-locally-advanced-nsclc OncLive “Treatment of Early-Stage NSCLC” http://www.onclive.com/insights/multimodal-advanced-nsclc/treatment-of-early-stage-nsclc Cure Today “Who Wears the Face of Cancer?” https://www.curetoday.com/community/bonnie-annis/2018/01/who-wears-the-face-of-cancer Pittsburgh Post-Gazette “LUNGevity Foundation Announces Initiative to Save Lives Through Increased Adherence to Lung Cancer Screening” http://markets.post-gazette.com/postgazette/news/read/35699542/lungevity_foundation_announces_initiative_to_save_lives_through_increased_adherence_to_lung_cancer_screening EurekAlert! “Small Molecule Plays a Big Role in Reducing Cancer’s Spread” https://www.eurekalert.org/pub_releases/2018-01/mcog-smp013018.php KIMT-TV “Lung Cancer Survivor Heads to Super Bowl 52” http://www.kimt.com/content/news/Lung-cancer-survivor-heads-to-Super-Bowl-52-471847253.html The New York Times “After a Cancer Diagnosis, Playing the Odds” https://www.nytimes.com/2018/01/31/well/live/after-a-cancer-diagnosis-playing-the-odds.html Targeted Oncology “Will Combination Therapy with Immunotherapy Become the New Standard of Care for NSCLC?” http://www.targetedonc.com/news/will-combination-therapies-with-immunotherapy-become-the-new-standard-of-care-for-nsclc MIT News “Fine-Tuning Cancer Medicine” http://news.mit.edu/2018/fine-tuning-cancer-medicine-0201 Medical Xpress “Early Access to Palliative Care Associated with Better Quality of Life” https://medicalxpress.com/news/2018-02-early-access-palliative-quality-life.html Medical Xpress “Clinical Trial Tests Feasibility of Targeting Particular Classes of Tumor Types with Certain Drugs” https://medicalxpress.com/news/2018-02-clinical-trial-feasibility-classes-tumor.html
  14. Here is the weekly clip report: PR Newswire “LUNGevity Foundation Kicks Off New Public Service Campaign to Alter View of Lung Cancer Diagnosis” https://www.prnewswire.com/news-releases/lungevity-foundation-kicks-off-new-public-service-campaign-to-alter-view-of-lung-cancer-diagnosis-300583589.html Baylor College of Medicine “Immunotherapy Treatment Gives Lung Cancer Patient Second Chance” https://blogs.bcm.edu/2018/01/22/immunotherapy-treatment-gives-lung-cancer-patient-second-chance/ Variety “Allison Shearmur, ‘Rogue One,’ “Hunger Games’ Producer, Dies at 54” http://variety.com/2018/film/news/allison-shearmur-dead-dies-star-wars-hunger-games-1202670745/ South Fine Arts Blog “LUNGEVITY Arts Coffee House” http://southfinearts.blogspot.com/ EurekAlert! “Leading Medical Organizations Update Lung Cancer Guideline” https://eurekalert.org/pub_releases/2018-01/iaft-lmo012318.php PR Newswire “Biomarck Announces the Start of a Phase 2 Clinical Trial of BIO-11006 for Non-Small Cell Lung Cancer (NSCLC)” https://www.prnewswire.com/news-releases/biomarck-announces-the-start-of-a-phase-2-clinical-trial-of-bio-11006-for-non-small-cell-lung-cancer-nsclc-300586095.html Cleveland Clinic “Immunotherapy Triggers New Lease on Life for Lung Cancer Patients” https://newsroom.clevelandclinic.org/2018/01/22/immunotherapy-triggers-new-lease-on-life-for-lung-cancer-patient/ OncLive “Dr. Garon on Sequencing of Agents for Advanced Lung Cancer” http://www.onclive.com/onclive-tv/dr-garon-on-sequencing-of-agents-for-advanced-lung-cancer EurekAlert! “International Organizations Partner to Spread Awareness of Revised Lung Cancer Staging Criteria” https://www.eurekalert.org/pub_releases/2018-01/iaft-iop012318.php University of Chicago Medicine “Targeted Treatments Halt Spread of Advanced Non-Small Cell Lung Cancer” https://www.uchicagomedicine.org/cancer-articles/targeted-treatments-halt-spread-of-advanced-non-small-cell-lung-cancer HealthDay “New Treatments Tackling Tough Lung Cancer” https://consumer.healthday.com/cancer-information-5/lung-cancer-news-100/new-treatments-tackling-tough-lung-cancer-730442.html Cancer Therapy Advisor “Lung Cancer: FDA Collaboration Highlights Real-World Immunotherapy Treatment Patterns” https://www.cancertherapyadvisor.com/lung-cancer/lung-cancer-fda-collaboration-immunotherapy-treatment-patterns/article/739081/ The ASCO Post “Ceritinib in ALK-Positive Metastatic Non-Small Cell Lung Cancer” http://www.ascopost.com/issues/january-25-2018/ceritinib-in-alk-positive-metastatic-non-small-cell-lung-cancer/
  15. LaurenH

    Sam McBride

    Around the first of December 2015 I noticed I was having some shortness of breath when I climbed the flight of stairs to my apartment. I didn't think much of it at the time. I just chalked it up to my age (62) and being out of shape. As time went on the shortness of breath became worse and I developed a persistent cough with some transient hoarseness. I decided it was time to see the doctor. My primary care provider diagnosed me with asthma/bronchitis, which I had many times over the years in the past. He put me on an antibiotic and an inhaler which usually worked. As the days went by and I did not get any better, I went back to see him. He switched the antibiotic and prescribed a cough syrup. I still wasn’t getting relief, so I went back a couple more times. The doctor seemed to be getting frustrated with me, and I knew I needed to see a specialist. I scheduled an appointment with a pulmonologist. A chest x-ray showed a large pleural effusion. I underwent a thoracentesis, which revealed malignant cells in the fluid. A CT also showed several masses in my right lung. I was sent to a thoracic surgeon who performed a pluerodisis and biopsy. The biopsy revealed stage 4 metastatic non-small cell lung cancer (NSCLC) that tested positive for the ALK mutation. After learning about the advancements in the treatment of NSCLC, especially in the ALK mutation, I chose to have treatment. My oncologist recommended an oral targeted therapy drug Xalkori (crizotinib). He explained that the drug was not a "cure" but was very effective in shrinking or slowing tumor growth, which it did with very few side effects. Shortly after being diagnosed and before beginning treatment with Xalkori I started researching everything I could find about lung cancer just trying to get a better understanding of my disease and find support from others who were dealing with lung cancer, it was during this research that I came upon the LUNGevity website. The name was the first thing that attracted me, I thought it was a neat play on the word longevity but as I began reading I soon realized there was a wealth of information and support there and that the organizaton was very actively involved with funding for research which really appealed to me because I feel it is through research that a cure will one day be found. I liked what I learned and decided to become a Social Media Ambassador so that I could help spread the word about lung cancer and clear up some misconceptions about the disease. I attended a Hope summit put on by Lungevity in Washington DC where I was even more impressed with the organization and the wonderful people involved with it. The LUNGevity website, Inspire, and the Alkies Worldwide Facebook group have been valuable resources of information and support for me. I am also a member of a cancer support group at my church. The biggest challenge to me is always living with this disease in the back of my mind. Every scan or blood test reminds me that there is a potential killer living in my body and I don't know what it is up to until I get my results. It is as much a mental disease as it is a physical one. To me, a survivor is a person who has overcome something bad and lived to tell about it. If I could give any advice or words of wisdom to a newly diagnosed patient, I would first tell them that lung cancer is no longer the automatic death sentence that it was in the past. I would tell them to demand gene mutation testing so they know what kinds of treatment options are available. I would also tell them that lung cancer treatment is a waiting game. It’s helpful to distract yourself with life and not to focus solely on this disease. Don't give lung cancer that much power over you! I hope that my efforts as a volunteer will help raise awareness and funds for lung cancer research. I want to make people aware that it only takes lungs to get lung cancer. Sam and her husband Bob in Jackson Hole, Wyoming, shortly after her diagnosis.
  16. 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.
  17. Good morning! I am a grateful survivor of NSCLC, having been diagnosed Stage IV December 2015. I've been on Tarceva for 15 months, and it melted the tumors away to being mere scar tissue at this point, NED! As much as I recognize how lucky I am to be in the early years of targeted therapy (3 years ago, I could have died in 6 months from this), I still have a bone to pick with cancer. Just not good enough that it's not GONE completely! Never want to say it's "okay" to live with cancer! Doc says targeted therapy is to be done for the rest of my life, that I won't stay cancer free without it. Not acceptable! I'm learning to live with most side effects - my hair broke off and came back looking like a pile of public hair on my head. I get diarrhea frequently, have learned what to eat/not eat and to time things around it. Skin rash is gnarly - heavy doses of doxycyclene to counteract, which makes me so damn sun sensitive, but really have no options around it - people should invest in sunscreen companies because how much I buy! But the latest news is discouraging. . . My doc had mentioned to me long-term consequences of having Tarceva in my system - it is, let's face it, a poison - even if targeted, it DOES take out some normal cells, that's why we have side effects. Some system issues to monitor - heart, liver, etc. I asked about my joints because they hurt like hell at times. He didn't think they'd be involved. So now that I know there is some collateral damage, I wonder if others suffer from it. Does anyone suffer joint pain? Mine's in my ankles, knees, hips and shoulders. Is this what people call neuropathy? Sometimes it keeps me from sleeping at night. What do others do? As for my refusal to "live with cancer," I know it is the new norm to let it be a chronic disease, like MS, or diabetes, which can be controlled. I say we need to continue to fight to kill this sinister evil, to ensure it is gone completely and gone for good! Let's not slack on the research!
  18. Hello, new to the forum, but 15 months into Stage 4 NSCLC, with NED at this point. Been on targeted therapy (Tarceva) for 14 months, with excellent results. But I'm being worn down by side effects. And my onc told me last visit that even though I am NED I need to stay on the targeted therapy drugs to prevent the cancer from recurring. For the rest of my life. While I am grateful I did not have chemotherapy and the awful side effects of that - I can work, I can modestly exercise, and do regular daily activities - I still detest the side effects and hate the fact I'm stuck taking "poison" to stay NED. My skin rash is only controlled by doxycyclene in high doses, which makes me uber-sensitive to sun so I stay out (a tragedy for me, maybe not others). I'm learning to live with my hair looking like a pile of pubic hair on my head. I've learned to "time" my GI distress and know what I can get away with and when. But what I worry about most is what my onc says will be "long-term effects of toxicity" with the targeted therapy drugs. He told me I'll soon have to begin monitoring for heart disease and liver disease. Other system failures/diseases will have to be watched. He reminded me that that is why he said, at the very beginning of my diagnosis, "you're life will be shortened, but that does not mean you'll be gone tomorrow, or even 5 years from now." Okay, that's bad enough, but maybe my psyche is getting to me. I swear my joints are giving out on me. I cannot sleep at night due to pain in my hips, knees, ankles and shoulders. I've severely cut back on running - can only walk now. I've mentioned that to my onc - he said that's hardly likely caused by the meds and I should go to my regular doc for resolution of this problem. My head is completely messed up. How can I be thankful for the life I've been given through these awesome targeted therapies, and yet curse the long-term effects. And is it "causing" a mental sense that my joints are affected? I'll go to my regular doc, as suggested, but just wanted to know if others go through the same thing?
  19. Thriving With Cancer A year ago, I was the healthiest 60-something year-old person I knew. Worked out every day; ate well; kept my weight down. My blood work-ups from my annual physicals were suitable for framing. Then, the bomb hit. In October 2016, I was diagnosed with Stage IV Lung Cancer. I had thoracic surgery, and due to the recovery from that plus the pain from the disease itself, I was on a hefty dose of opiate medications. For the rest of that year, I was pretty much a pain-ridden, groggy-headed vegetable. Lung Cancer Death Sentence? But, fortunately for me, that is not the end of my story, just the beginning. For anyone who knows about this disease, my diagnosis used to be a death sentence, and frankly still is for many, many people. I, however, had the good fortune to have tested positive for a genetic mutation that could be treated with an oral medication called Tarceva; more effective than chemo and with fewer and less severe side effects. I started on this medication on November 1, 2016. Before updating you on my status, let me digress just a bit. My Unwanted Intimacy with Lung Cancer It is my great un-fortune to have considerable history with lung cancer. I held my mother’s hand 8 years ago when she took her last breath after her bout with this disease. More recently, just 3 years ago, I held my little sister’s hand when she too succumbed to this miserable malady. And so, now it’s my turn. I am now 5 months into my treatment, and pretty much back into my normal life. At the same point in time for them, my mother was dead, and my sister was desperately trying a variety of chemotherapy cocktails, to no avail. So, what is different today? The Foundations for a New Approach to Treatment The difference today can be traced back to Richard Nixon (off all people), who declared a war on cancer way back in 1971 and funded significant research efforts to fight this war. I never thought I’d be thanking Nixon for anything, but he has my gratitude. The difference is also due to Craig Venter and Francis Collins, who sequenced the human genome in the early 2000s. And, the difference is due to thousands of researchers since then who’ve utilized the foundational research that resulted from these efforts and designed whole new approaches to treatment for cancer. When my mother was diagnosed 8 years ago, she had one option for treatment: chemo. When my sister was diagnosed 4 years ago, she had two options: chemo, or targeted therapy for a couple of gene mutation. When I was diagnosed, lung cancer treatment was already in the midst of a revolution. Chemotherapy, the go-to approach for all advanced lung cancer not that long ago, is the choice only half of the time today. The other half of lung cancer cases are being treated by either targeted treatment (like my own), or immunotherapy, both of which are far, far superior. So, I am the beneficiary of research. Pure and simple. The team of people who are caring for me at Lurie are fabulous, but it is the research that led to targeted treatments that is the key to my life. Where to Next? With a need and desire to do something with my gratitude, I spent time with Dr. Platanias, who heads up The Lurie Comprehensive Cancer Center, and he told me about OncoSET. This, my friends, is research that will lead to the next revolution in cancer treatment: PERSONALIZATION. If you haven’t already read the summary of this effort on this page, please do. Treatment of many diseases, cancer included, will become one-to-one. Each of us treated for exactly our unique profile. I believe it, but more importantly, so do those who truly know what they are talking about. I’m in the process of sending over a hefty donation of money to jump-start the lung cancer part of this program, and am participating in the research with my own data. I will update you on what I learn about myself through this process. Thriving with Cancer? Really?! When I started this note, I told you that a year ago, I was the healthiest person I knew. A year later, I am the healthiest person I know, who happens to have cancer. It’s not SURVIVING, it’s THRIVING. And, I have research to thank. I can think of no better place to invest your support, so please join me in giving to this worthy effort. Our children and their children with thank us, even if we’re not Nixon or Venter.
  20. LUNGevity Foundation Issues Request for Applications for 2017 Career Development Awards for Translational Research in Lung Cancer Application now available online FOR IMMEDIATE RELEASE Media Contact: Austin Courtney acourtney@susandavis.com (202) 414-0791 Washington, D.C. (January 17, 2017) — LUNGevity has issued a Request for Applications (RFA) for translational research for Career Development Awards that will be granted in 2017. The RFA is available on the LUNGevity website at www.LUNGevity.org/career-development-awards and is also posted on the proposalCENTRAL website at https://proposalcentral.altum.com. LUNGevity’s Career Development Awards for Translational Research program was created to support future research leaders who will keep the field of lung cancer research vibrant with new ideas. Successful applicants may receive $100,000 per year for a possible period of three years and will participate as non-voting members of LUNGevity’s Scientific Advisory Board for the duration of the award. Applicants must be within the first five years of their faculty appointment. The Career Development Awards are mentored awards, and a mentoring plan is part of the required submission. Projects that will be funded in 2017 are expected to have a direct impact on the early detection of lung cancer or on the outcomes of lung cancer, or to provide a clear conceptual or experimental foundation for the future development of methods for early detection and/or individualized treatment, including through targeted therapy and immunotherapy. Letters of intent must be submitted by Friday, February 20, 2017. LUNGevity supports the largest research awards program of any lung cancer-focused organization in the United States. Since 2002, LUNGevity has funded 118 projects at 58 institutions in 23 states. About Lung Cancer in the U.S. About 1 in 15 Americans will be diagnosed with lung cancer in their lifetime More than 224,000 people in the U.S. will be diagnosed with lung cancer this year About 60%-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers Lung cancer takes more lives than the next four deadliest cancers (colorectal, pancreatic, breast, and prostate) combined Only 18% of all people diagnosed with lung cancer will survive 5 years or more, BUT if it’s caught before it spreads, the chance for 5-year survival improves dramatically About LUNGevity Foundation LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org. Click here to read the full press release online.
  21. “Squamous cell cancer offers distinct therapeutic challenges by virtue of presentation in older patients, its physical location in the chest, pattern of metastasis and association with comorbidities that can compromise treatment delivery and exacerbate toxicity.” This quote is from the article Targeted Therapy for Advanced Squamous Cell Lung Cancer. When diagnosed, almost 13 years ago, I didn’t realize lung cancer had types. Pathologists visually classify lung cancer cells seen under a microscope as small cell and non-small cell. From this simple delineation, further classification gets complicated introducing sub-type terms of adenocarcinoma, squamous cell and large cell. Large cell as a type of non-small cell? I recall dwelling on the large cell moniker and finally concluding a non-small cell can be a large cell. I remember the emergency room physician telling me I was lucky; my form of lung cancer was treatable compared to the other type. He didn’t say small cell, but I think that is what he meant. Indeed about 15-percent of us suffer from this nasty presentation that metastasizes rapidly. Adenocarcinoma sub-subtypes have morphed into an alphanumeric soup as research at the genetic level identifies biomarker profiles, mutations in an individual’s lung cancer that can serve as attack portals into the cancer cell by targeted therapy. Now adenocarcinoma survivors use terms like ALK, KRAS, EGFR and PIK3CA to further classify their disease and new targeted treatment drugs emerge to attack, like mutant Ninja Turtles! Some of these are so effective, they’ve moved to first-line therapy. Adenocarcinoma describes a type of cancer that occurs in the mucus-secreting glands throughout the body. Lungs naturally have an abundance of these glands but so do the prostrate, pancreas, and intestines. Squamous cells derive their name from the Latin squama meaning scale like those present on a fish. We have a lot of squamous cells including skin, the lining of hollow organs, and passages of digestive and respiratory tracts. The right main stem bronchus contained my squamous cell tumor. The location is what tipped-off the emergency room physician; he didn’t realize how lucky I was given the nature of my treatment and extent of survival. Speaking of treatment, the cited article reports: “therapeutic progress in squamous cell lung cancer has been relatively slow, with relative stagnation of survival numbers….Treatment for SqCC [squamous cell cancer] of the lung remains an unmet need, and novel strategies are needed including specific targeted therapies….” That’s not good. First-line therapy for many continues to be the dual recipe of some variation of taxol and carboplatin, the same drugs I was administered from 2004 through 2007. And, survival rates have not significantly changed despite chemistry changes in platinum and taxol based agents. Thankfully, these have lowered the incidence of peripheral neuropathy and this is helpful. Second and subsequent line therapies for squamous cell have benefited somewhat from research. Immunotherapy research has yielded some success in developing drugs that enhance our immune system’s ability to recognize and attack cancer cells. The alphanumeric monikers PD-1 and PD-L1 are starting to resonate with squamous cell survivors. I do like the names of these approaches ⎯ PD meaning programmed death! The idea of programming cancer cells to die is satisfying although that is not the means of attack. Nevertheless, the scientist that named this approach deserves recognition because a scheduled execution of squamous cancer cells would be well deserved payback. All squamous lung cancer cells are programmed to die tomorrow at high noon! But, progress in the genetic arena for squamous cell cancer has been slow because it is genetically more complex compared to adenocarcinoma and mutates faster. So it is a harder target to hit. When I think of hard cancer targets, I am reminded of Siddhartha Mukherjee’s superb book The Emperor of all Maladies. He aptly describes the challenge of chemotherapy as “finding some agent that will dissolve away the left ear and leave the right ear unharmed.” He also called cancer a “clonally evolving disease.” Cancer cells grow by cloning at a rate far faster than normal cells. Every new cohort creates mutants and some of these survive the assault of chemotherapy. All that need survive is one; it will rapidly grow now immune to the drugs targeted to kill it. Mukherjee said: “the genetic instability, like a perfect madness, only provides more impetus to generate mutant clones. Cancer thus exploits the fundamental logic of evolution unlike any other illness.” Cancer is pure evolutionary nastiness! “Better things for better living through chemistry” was the tagline of the DuPont Corporation. Growing up in southeastern Pennsylvania, many neighbors were chemists commuting to the company research center, just across the Delaware state line. DuPont changed our world evolving from an 1802 gunpowder maker to inventing Nylon, Mylar, Teflon, and Nomex to name a few. Squamous cell lung cancer survivors need better chemistry. The call goes out for a biochemist to step-up and shut down the perfect madness of the clonally evolving squamous cancer cell. Stay the course.
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