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  1. Hello. I am new here and was diagnosed with NSCLC Squamous cell type, in Sept. 2021. I am 64 years old and a very active and healthy person prior to all this I was misdiagnosed for over 9 months with Post Herpetic Neuralgia and the cancer was found by chance after my pain doctor ordered an MRI due to longstanding shoulder pain and hand weakness and a rash. A large 9 cm tumor in the apex of my right lung was found. It was not operable due to location near my spine per a neurosurgeon. Initially my oncologist gave me "months" to live and guessed my cancer was at stage IV. I started Carbo/taxol immediately but after 6 weeks (2 chemo rounds) and multiple CT scans, MRI's, a Pet scan and a biopsy, it was discovered that though the tumor was large it was isolated in the right lung with some small mets to the mediastinal and clavicle nodes but hadn't progressed as first thought. A curative intent plan was presented to me and I chose to do concurrent chemo/radiation for 6 weeks. I finished that on 1/25/21. The large tumor shrunk about 2 centimeters and the questionable lymph nodes had just about disappeared or remained stable. Just this week i pressed my oncologist about what stage the cancer is now and he said stage III. I started Imfinzi 2 days ago. My PDL-1 marker was only 2% but still an indication that it might work. (Diagnosis: 1. right apical lung squamous cell carcinoma, involving the chest wall, ribs and T1-T3 vertebral bodies. PDL1 2 %. STRATA next generation sequencing showed PTEN, CDKN2A, MLL2, MLL3, TP53 mutations and MYC amplification. 2. Pancoast syndrome) I am feeling great! Shortness of breath (SOB) is the only issue keeping me from doing all I did before this happened. It looks like I have a couple areas of my lung that are collapsed Question: 1. Does the SOB get better over time? Is there anything I can do besides breathing exercises to help? 2. I have yet to find anyone with similar biomarkers to mine. Anyone? 3. What is the difference between the ways that tumors are staged? Prior to treatment my radiation oncologist staged me T4N3 which I know refers to the tumor size ""T" and "N" 3 lymph nodes involved. How does this correlate with Stage III? I hope I am making sense. LOL! 4. Could my tumor continue to shrink with Imfinzi? I have a very positive outlook and a strong faith base.
  2. Quick question: I was wondering if anyone had any experience to share with immuno or targeted therapy for SCLC. A few trials have shown efficacy of Keytruda and Opdivo in SCLC under certain circumstances. Previously, there hadn't been any signs of it working, so SCLC typically isn't even tested for genetic sequencing, protein expressions, etc. So, we're now in the process of getting the testing done for PDL1, TMB and genetic sequencing. Has anyone here taken Keytruda, Opdivo or anything else for SCLC? Any results to share? Experiences? Anything you can share would be very helpful.
  3. 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.
  4. Any thoughts/Experience?? High doses of vitamin C to improve cancer treatment passes human safety trial https://www.sciencedaily.com/releases/2017/03/170330142341.htm
  5. Hi. I just joined this site for help and support. My mother (age 70) was recently diagnosed with Stage IV NSCLC adenocarcinoma with mets to liver and bones. She is in poor health and has decided against chemo. She started the Opdivo and Yervoy combo today and we are all very anxious on what to expect and how she will respond. I would love to hear about any members' experiences with this immunotherapy combo! Thank you, and thank you for this forum.
  6. RonH


    Joined this earlier this year and am just now trying to figure out how to post. I was diagnosed with Stage 3A NSCLC in June of 2018. Last year I completed 7 weeks of Concurrent Chemo-Radiation, then 5 weeks of Consolidation Chemotherapy and as of this week (July 29th, 2019) have now received 17 of 24 immunotherapy infusions of Durvalumab. I have my next CT scan and MRI in a few weeks and am hoping for the best.
  7. Anyone have experience dealing with stage 4 non small cell lung cancer, KRAS mutation and low PDL-1 expressor? My husband had surgery just over a year ago where a tumour was removed in lower and middle right lung. He now has 10+ micro nodules in his left lung. I realize this is a long shot. I’m new to this forum. thanks.
  8. Hi, my father had been dx with SCLC in January and underwent the cycles of carboplatin+ etoposide + tecentriq (immunotherapy) with fairly good response. Now his onco team are planning to do radiation (IGRT) along with carbo+ etoposide. They are saying adding tecentriq to the regime will be too toxic. Has anyone undergone/going through chemo+immunotherapy+ radiation simultaneously ? Prompt response would be of great help
  9. First off, I am a stage 3 NSCLC patient who was first diagnosed January of 2015. I underwent surgery (thoroscopic wedge resection) to remove a lime size tumor from my right lung. Everything seemed to be going good until a year later when a recurrence occurred in both lungs and the lymph nodes in my chest. More surgery was not an option so I was scheduled to begin radiation therapy and chemo. the radiation had some unpleasant side effects but resolved the issue with my lymph nodes. The chemo had very limited success so after a few months off to recover I started my second round of platinum based chemo and one other drug. I guess I was lucky since the side effects of the chemo were not that severe. I lost all of my hair of course and had a lot of fatigue and loss of appetite, but that was about it. Once again the chemo had limited success although it helped to keep the cancer from spreading to other organs. Last March my oncologist suggested Immunotherapy, so I began Opdivo infusion once every two weeks. Two great things about this. 1) I can tolerate the Opdivo a lot better with no side effects to speak of. And 2) My last CT scan showed some incredible results. the tumors in my right lung were stable (no growth) and the tumor in my left lung was gone ! I realize this is not a cure, but as they say it is a chance to live a little longer.
  10. LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, announced today the recipients of its 2018 Career Development Awards (CDA) for lung cancer research. These coveted awards fund critical lung cancer research projects and offer the recipients world-class mentorship by LUNGevity’s prestigious Scientific Advisory Board. “We are excited to support these exceptionally talented new investigators. Interestingly, all three of these projects involve liquid biopsy-based approaches to detecting and optimizing treatment of lung cancer. These new projects may define new avenues for applying liquid biopsies in the clinical setting,” notes Charles Rudin, MD, PhD, Professor and Chief, Thoracic Oncology Service, at Memorial Sloan Kettering Cancer Center and chair of LUNGevity’s Scientific Advisory Board. “We believe that this outstanding group of awardees will help make progress in improving outcomes for lung cancer patients.” LUNGevity is proud to support the following 2018 Career Development Award researchers: Kellie Smith, PhD, Johns Hopkins School of Medicine, Immunometabolic T cell profiling as a prognostic liquid biopsy in non-small cell lung cancer. Dr. Smith’s research group will work to develop a liquid biopsy that predicts advanced-stage non-small cell lung cancer patient responses to combination immunotherapy regimens. Jeffrey Thompson, MD, University of Pennsylvania, Development of markers to predict response to immunotherapy in NSCLC. Dr. Thompson’s laboratory is working to develop blood-based tests to identify individuals most likely to respond to immunotherapy with minimum side effects, helping to ensure customized immunotherapies for advanced-stage non-small cell lung cancer patients. Edwin Yau, MD, PhD, Roswell Park Cancer Institute, Lung cancer detection by CRISPR-based detection of circulating tumor DNA. Dr. Yau’s team is developing a quick and cost-effective blood test for early detection of lung cancer that will complement CT screening. “By funding young investigators, LUNGevity keeps outstanding scientists, still early in their careers, in the lung cancer space. We work closely with these researchers with the hope of seeing them become the next generation of scientific superstars,” says Andrea Ferris, President and CEO of LUNGevity. “The CDA program encourages their continued development in the field of lung cancer research to grow a strong pipeline of dedicated lung cancer researchers.” Under the stewardship of LUNGevity’s Scientific Advisory Board, a group of 21 prominent scientists and researchers, LUNGevity ensures that grants are awarded to those researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as for extending and improving lives of lung cancer survivors. LUNGevity is the only lung cancer organization with a programmatic focus on early detection and a robust Career Development Award Program. Our researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The foundation’s overall research program, including CDA awards, is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. LUNGevity’s Scientific Research Program is supported by individual donors, the American Lung Association, Bristol-Myers Squibb, The Thomas G. Labrecque Foundation, Upstage Lung Cancer, and the Schmidt Legacy Foundation. Read the full press release.
  11. 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/
  12. Hello, this is my first post. My dad was diagnosed with Stage 4 lung cancer, non-small cell, adenocarcinoma the end of July. They found 10-13 lesions in the brain, one area on the adrenal gland , one on the spine , and possibly a small area on the liver. My dad had 2 weeks of radiation on the brain immediately. Before treatment, he got very unsteady and had a drop foot. After radiation, he got most of his coordination back. He had palliative radiation to the place on his spine for pain. Last Monday, my dad's oncologist put my dad on 2 chemo drugs (not sure the names at this time) and ketruda (immunotherapy drug). His oncologist said this was recently approved by the FDA to give both at the same time? I really haven't seen any info about this. I am just wondering if this is a new thing, or are they throwing all of this at my dad at once thinking he don't have much time and this is his best option? Thanks.
  13. I've got a great update and a decision to make. After a resection of a small brain tumor plus gamma knife and just two cycles of chemotherapy, my Mom is presenting as NED (no evidence of disease) with small-cell lung cancer (SCLC). She has no side-effects from chemo, so she will go through 6 full cycles. However, I want to line up the next treatment. Usually, there is no maintenance regime with SCLC. We have 3 options: 1) Thoracic Radiation - Accepted to suppress the cancer from coming back, but may this preclude us from future clinical trials, many of which have prior radiation as an exclusion criteria. 2) Immunotherapy with Opdivo/Keytruda - Seem to be effective in many cases with SCLC and can be prescribed off-label for SCLC, but I think you'd only get these for treatment of a solid tumor, correct? Wouldn't be given if NED, right? So, I think this isn't an option outside of a trial. 3) Clinical trial - I've found next to nothing in terms of a maintenance trial for SCLC, and of those I found, only 1-2 would accept NED patients. Of these, one had 4 patient groups: 2 with placebo, 1 with Rova-T which is reported to have a lot of side-effects and just spectacularly failed a phase II trial, and 1 group with Dexamethasone, which gives my mom bad side effects. So, this isn't at all appealing. Anyone know of something else I may have missed? Any advice on what to do from here or your experience would be very welcome. Celebrating NED! Thanks.
  14. 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
  15. 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
  16. Co-written by LUNGevity and Mesothelioma Cancer Alliance A recent shift in cancer treatments from traditional, aggressive, overarching methods to targeted therapies tailored to individual patients and their medical situation has produced a resurgence of research in immunotherapy as a cancer treatment including multiple FDA approvals in the last few years. Today we are it taking a moment to reflect on how immunotherapy has progressed over the last twenty years. Immunotherapy is nothing new and has been in use for more than a century, but its potential is often seen as a mystery. While the average person might not understand the finer intricacies of these rapidly developing treatments, patients and doctors alike are reaping the benefits. Immunotherapy is a type of treatment that is meant to boost the body’s own immune system to help identify and fight rogue pathogens and cells, including cancer cells. In some cases, treatments can help activate the body’s defenses to better equip a patient to fight off diseases more efficiently. In other instances, immunotherapy may provide the immune system with proteins it’s lacking. When cancer cells develop, they may send signals like a mask that deceives the patient’s body into recognizing them as normal, so the invading cells aren’t attacked. In other cases, a person’s immune system might notice the cancer cells are different, but still doesn’t attack them. To help combat this, medical researchers have developed drugs called immune checkpoint inhibitors to provide T cells—specialized immune cells—the ability to identify cancer cells and attack them. For example, cancer cells produce high amounts of a protein called PD-L1. This protein binds to T cells and blocks them from launching an attack against the cancer cells Immune checkpoint inhibitors that can block this connection have helped patients fight several types of cancer, including melanoma, some types of lung cancer, and head and neck cancers. Therapeutic cancer vaccines have also been developed in recent years in an attempt to boost the immune system to fight off infections or, like other forms of immunotherapy, attempts to spark an immune response to fight the cancer cells. The most well-known types of these vaccines are meant to prevent the HPV virus, which has been linked to several types of cancer, such as cervical and throat cancers. In most cases, however, the drugs have not been approved, although several cancer vaccines are currently being studied in clinical trials. The main drawback of these types of vaccines is that unlike regular vaccines, which train the body to attack viruses by using weakened versions of them, therapeutic cancer vaccines attempt to encourage the body’s immune system to attack a disease that’s already in the body. Lung cancer describes many different types of cancer that start in the lung or related structures. There are two main types of lung cancer: non-small cell (NSCLC) and small cell lung cancer (SCLC). Currently, immune checkpoint inhibitors are available for a subset of advanced-stage NSCLC cancer patients. For those NSCLC patients whose tumors produce high amounts of PD-L1 protein, pembrolizumab, an immunotherapy drug federally approved to treat melanoma and non-small cell lung cancer, is available both in the first-line setting, as well as for those patients who have progressed on chemotherapy. A combination of chemotherapy and pembrolizumab has been shown to work in adenocarcinoma (a subtype of NSCLC) patients whose tumors don’t make PD-L1 protein. Two other drugs, nivolumab and atezolizumab, are available for advanced-stage NSCLC patients in the second-line setting, irrespective of how much PD-L1 protein is made by their tumors. Currently, immunotherapy either as monotherapy or in combination, are ongoing in both NSCLC and SCLC. Readout of these trials will determine standard of care of advanced-stage lung cancer patients. For those battling mesothelioma, a rare cancer often found in the lining of the lung and directly linked to asbestos exposure, immunotherapy could be a new tool patients can use to fight their cancer and extend their lives. Currently, immunotherapy for mesothelioma is showing promise in early clinical trials, namely with pembrolizumab. If the trials continue to present promising results, the treatment could eventually be FDA-approved for mesothelioma, giving doctors and patients an opportunity to more effectively target and treat this aggressive disease. Clinical trials are paramount to furthering our knowledge and generating the best results for current patients and those who may be at risk of developing cancer in the coming years. The advent of the National Cancer Moonshot has streamlined the clinical trial process, which according to the National Cancer Institute has drawn in about 5 percent of cancer patients into trials each year. By making it easier to find and join these important trials, hopefully more patients will get involved and eventually send the valuable information they provide as feedback to their doctors and medical researchers, which ultimately benefits current and future patients. Mesothelioma is only one cancer benefiting from more access to clinical trials, but the overall development of immunotherapy is giving the medical community hope for an eventual cure by better harnessing the body’s own defenses. While immunotherapy is currently being used as both a stand-alone treatment and as part of a combination treatment method with surgery, radiation and/or chemotherapy, one thought is that one day it could replace traditional methods entirely. With that said, we must move along with cautious optimism—there are still many unknowns and a long road of research ahead. Some cancers and even specific patients have not responded as well to current immunotherapy treatment methods. Researchers are hoping to discover more prognostic biomarkers that will better predict which patients will respond well to the treatment based on their cancer type and own gene set. There is still much research to do on improving side effects of immunotherapy as well, which have many factors that affect severity including the patient's health and the stage and type of cancer. As more studies are conducted and research is completed, scientists and researchers hope immunotherapy becomes even more effective at treating not only lung cancer and mesothelioma, but also patients across all cancers. Immunotherapy isn’t a miracle cure for cancers, but it’s quickly becoming a valuable tool doctors and patients can use to extend their lives and raise their quality of life. Immunotherapy as we know it is still in its infancy, but has quickly become a shining star in the medical world. Patients are already reaping some of the benefits this type of treatment provides, and for those in clinical trials, the studies are offering them something intangible: hope. That’s something everyone can use, especially during such a trying and difficult time.
  17. 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/
  18. The treatment landscape of non-small cell lung cancer (NSCLC) is rapidly evolving, with the development of genetically targeted therapies and immunotherapy. Since 2015, the US Food and Drug Administration (FDA) has approved nine new drugs for the treatment of NSCLC, three reapprovals, and six new indications for an existing treatment. However, the side effects and toxicities of these treatments can be significant. With the emergence of new treatment options for lung cancer, the complexity of treatment decisions for people living with lung cancer has increased. With these treatment options come unaddressed questions: What do patients really want from their treatment? Better quality of life? Extended survival? Other benefits? With this in mind, LUNGevity launched Project Transform in partnership with Johns Hopkins School of Public Health, to focus on developing and applying novel methods (eg, discrete-choice experiments) to scientifically quantify patient preferences for the benefits and risks of treatments for lung cancer. The results obtained from this initiative will be used to inform regulators, industry, and clinicians of the preferences of people living with lung cancer. Your Voice Matters! LUNGevity wants to learn more about what patients (and their caregivers) want from their treatments. Please take this quick survey: https://www.lungevity.org/research/patient-focused-research-center-patient-force/deriving-patient-preferences-project-3
  19. Patients' Gray Hair Turns Dark After Immunotherapy for Lung Cancer A surprising side effect of lung cancer treatment is turning heads. BY MINDY WAIZER Cancer treatments can have some terrible side effects. But one recent immunotherapy treatment for lung cancer has turned up a surprising — and not unwelcome — result. The patients’ gray hair turned significantly darker. The study, which was published in JAMA Dermatology, examined 14 patients who have non-small cell lung cancer (NSCLC) and were receiving immunotherapy treatments including one of the following agents: Opdivo (nivolumab), Keytruda (pembrolizumab) or Tecentriq (atezolizumab) at a hospital in Spain. Adverse effects of these kinds of treatments are likely to include cutaneous toxic side effects or dermatological problems, so the patients were being monitored by dermatologists. What doctors didn’t expect to see was that over the course of the treatment, the patients’ hair returned to youthful-looking, darker shades — the shades the patients’ hair had been before their hair turned gray. The average age of the patients was 65. Hair repigmentation is very rare. It has been reported before in relation to drugs such as Thalomid, for example, but it has never before been reported in relation to immunotherapy treatment for lung cancer. The reason for the darkening of patients’ hair color in these cases is still unclear. The number of patients in this study is small, and of course, more studies must be conducted. “This was totally unexpected, so it was exciting,” Noelia Rivera, M.D., dermatologist, Department of Dermatology, Hospital Universitari Germans Trias i Pujol, one of the authors of the study, said in an interview with CURE. “The high rates of good response to therapy in these patients was also an exciting finding. We are surprised at the results, and we are encouraged to keep on with the study,” she said. Thirteen of the 14 patients responded well to the immunotherapy treatment, reporting either partial or fully stable disease states. One had to stop the therapy after four cycles of treatment because of a life-threatening progression of the disease. The dual, positive implications of this study could be far-reaching. First, of course, it is good news for many patients with lung cancer, who may be able to benefit from these effective therapies. Second: just imagine if researchers could isolate the method for turning back the clock on graying hair. A whole new wave of age-defying hair solutions could be born. Rivera urges a cautious approach to the news of these patients’ hair repigmentation. “A lot of research is yet required, first to come up with a study, and after that, to get funding to develop the project,” she said. http://www.curetoday.com/articles/patients-gray-hair-turns-dark-after-immunotherapy-for-lung-cancer
  20. Hi - I just got diagnosed two weeks ago with adenocarcinoma. I had been diagnosed with pneumonia for a couple of months until a follow up x-ray showed spreading in the lungs and a CT scan was ordered and a pulmonologist did a bronchoscopy. I had to insist on doing biopsies. I wanted to find out why my cough wasn't getting better and my chest hurt when breathing. So here we are, two weeks in. I've had a clear CT brain scan, waiting for PET scan results and molecular studies/pathology. I have seen the oncologist exactly one time not even a week ago. He told me that surgery isn't an option. It is spread out and affected tissue doesn't appear to be tumors. Surgery wouldn't leave me with enough lung to survive. I am told we will be able to do targeted drug therapy. This isn't what I was hoping for because I was hoping it was something that could be removed. I am scared out of my mind, but lots of people keep saying that drug therapies have made amazing strides. I have seen a few other similar posts, and hoping to connect regarding drug therapy and it's effectiveness.
  21. Here is the weekly clip report: The ASCO Post “Stand Up To Cancer Launches ‘Cancer Interception’ Teams to Detect and Treat Cancer at Earliest Stages” http://www.ascopost.com/issues/november-25-2017/stand-up-to-cancer-launches-cancer-interception-teams-to-detect-and-treat-cancer-at-earliest-stages/ Stanford Medicine News Center “Stanford Scientists among Those Funded by Stand Up To Cancer” https://med.stanford.edu/news/all-news/2017/11/stanford-scientists-among-those-funded-by-stand-up-to-cancer.html Immuno-Oncology News “Imfinzi Increases Time for Non-Small Cell Lung Cancer to Progress, Phase 3 Trial Shows” https://immuno-oncologynews.com/2017/11/28/phase-3-trial-shows-imfinzi-lengthens-time-for-non-small-cell-lung-cancer-to-return/ Targeted Oncology “Ahead of NSCLC Approval Decision, FDA Now Weighing Durvalumab Data in NEJM” http://www.targetedonc.com/news/ahead-of-nsclc-approval-decision-fda-now-weighing-durvalumab-data-in-nejm OncLive “Immunotherapy to Have Emerging Role in Squamous Cell Lung Cancer” http://www.onclive.com/web-exclusives/immunotherapy-to-have-emerging-role-in-squamous-cell-lung-cancer Business Wire “Impassioned Lung Cancer Survivors Join Your Cancer Game Plan, Merck to Advocate for Others Facing This Highly Stigmatized Disease” http://www.businesswire.com/news/home/20171129005025/en/Impassioned-Lung-Cancer-Survivors-Join-Cancer-Game The Baltimore Sun “Life After Lung Cancer: How One Survivor is Fighting for Others” http://www.baltimoresun.com/bp/blt-ara-31849-life-after-lung-cancer-how-one-survivor-is-fighting-for-others-20171129-adstory.html National Press Club “Life After Cancer: Addressing Survivorship in Cancer Care” http://www.press.org/events/life-after-cancer-addressing-survivorship-cancer-care Markets Insider “Biocept and UC San Diego Medical Center Announce Clinical Study Collaboration to Demonstrate Utility of Biocept’s Liquid Biopsy Test in Immunotherapy” http://markets.businessinsider.com/news/stocks/Biocept-and-UC-San-Diego-Medical-Center-Announce-Clinical-Study-Collaboration-to-Demonstrate-Utility-of-Biocept-s-Liquid-Biopsy-Test-in-Immunotherapy-1009786790 Medical Xpress “Two-Drug Combination May Boost Immunotherapy Response in Lung Cancer Patients” https://medicalxpress.com/news/2017-11-two-drug-combination-boost-immunotherapy-responses.html Reuters “FDA Aims to Approve More Drugs Based on Early Clinical Data” https://www.reuters.com/article/us-fda-hearing-testimony/fda-aims-to-approve-more-drugs-based-on-early-clinical-data-idUSKBN1DU2DS Healio “Eight Important Updates in Lung Cancer” https://www.healio.com/hematology-oncology/lung-cancer/news/online/{56102e9b-63d2-4eea-8859-01b452dbe2b3}/eight-important-updates-in-lung-cancer Investor’s Business Daily “This Biotech Launched to a Record High on Cancer Test Approval” https://www.investors.com/news/technology/this-biotech-launched-to-a-record-high-on-cancer-test-approval/ DOD Congressionally Directed Medical Research Programs “Melissa Crouse – Lung Cancer Warrior, Mentor and Advocate” http://cdmrp.army.mil/cwg/stories/2017/melissa_crouse_profile Business Wire “FDA Approves Foundation Medicine’s FoundationOne Cdx, the First and Only Comprehensive Genomic Profiling Test for All Solid Tumors Incorporating Multiple Companion Diagnostics” http://www.businesswire.com/news/home/20171130006320/en/FDA-Approves-Foundation-Medicine’s-FoundationOne-CDx™-Comprehensive Markets Insider “Advocates Reveal Cancer Survivorship Challenges and Resources During National Comprehensive Cancer Network’s Patient Advocacy Summit” http://markets.businessinsider.com/news/stocks/Advocates-Reveal-Cancer-Survivorship-Challenges-and-Resources-during-National-Comprehensive-Cancer-Network-s-Patient-Advocacy-Summit-1010204005
  22. It’s an exciting time to be in cancer research and to watch some of these therapies move rapidly from clinic to improving the lives of patients. Sponsors play an important role during development by spearheading innovation, staying flexible, and planning accordingly for the rapid pace. Read more: http://medcitynews.com/2017/08/precision-medicine-immunotherapy-influencing-clinical-trial-design-cancer-drugs/
  23. http://gisborneherald.co.nz/localnews/2941654-135/call-for-keytruda-drug-for-lung WAITING FOR GOOD NEWS. Cancer patient Alain Jorion is hoping Keytruda will be funded for New Zealanders battling lung cancer. HIGH-profile Gisborne fisherman Alain Jorion is calling for the “wonder drug” Keytruda to be funded for lung cancer patients. “It is my one and only hope,’’ the cancer patient said. Last year Keytruda, after a much-publicised public campaign, was funded by Pharmac, but for people with advanced stage 4 and 5 melanoma only. Mr Jorion and other lung cancer patients around the country are now calling for the drug to be funded for them. “Without funding, it costs $150,000 and would be administered privately in Auckland,” Mr Jorion said. “Amazingly, Keytruda is administered in Gisborne Hospital and funded, but for advanced melanoma.” Mr Jorion said funding Keytruda was for the potential benefit of thousands of New Zealanders who have or would get lung cancer in the future. “After all, it is our greatest cancer killer. The story of Keytruda can be a great story.” A study presented to Pharmac said one in three patients treated with the drug have their tumours shrink or disappear completely. The drug is administered intravenously every three weeks. Keytruda is an immunotherapy drug, which stimulates the body’s immune system to fight cancer cells. Known generically as Pembrolizumab, it was approved by Medsafe this year as a first treatment for lung cancer patients who have the PD-L1 expression of non-small-cell lung cancer (NSCLC) (PD-L1 is a protein expressed by cancer cells to evade the immune system.) The drug’s manufacturer, Merck Sharp and Dohme Limited (MSD), are seeking Pharmac funding, but it is not clear how long that will take. May be a year Mr Jorion believes it might take a year, while friends and a health professional have told him it might be sooner. Paul Smith, MSD New Zealand director, said the Keytruda registration “has the potential to transform the way lung cancer is treated in New Zealand” “Clinical trial results have been so compelling that trial investigators believe Keytruda should replace platinum-based chemotherapy to become the new ‘Standard of Care’ for untreated advanced NSCLC. Philip Hope, chief executive of the Lung Foundation New Zealand, said,“I hope that this medicine will be made available on a funded basis to all New Zealanders with life-threatening lung cancer”. Lung cancer is diagnosed in about 2200 New Zealanders a year and more than 1600 people die from it each year. One in five people diagnosed with lung cancer, like Mr Jorion, have never smoked. Mr Jorion said he wanted to be involved in Keytruda trials. “I have to run with the trial as it’s my only hope really.” His oncologist describes him as “the perfect candidate’’ for the trial as a non-smoker who has not had chemotherapy”. “She said I was in pretty good nick. She will go back to Hamilton and send me the relevant paperwork to enter me into a trial. Trials are back on the agenda. She says this is her best recommendation for now for me.” Mr Jorion has another disappointing issue in that Dr William McCallum who has worked with cancer patients at Gisborne Hospital, Palmerston North Hospital and is curently supervising house surgeons and registrars at Dunedin Hospital and helping Otago University students, is having work visa and immigration issues. Patients using Keytruda He said Dr McCallum had evidence involving 2799 patients who used Keytruda for lung cancer. “He has worked extensively in America, Europe, New Zealand.” He loved Gisborne and would be a great asset to the country. Dr McCallum told the Herald he supported funding for Keytruda for NSCLC in New Zealand. “Although expensive, fortunately we are able to bargain for drug prices in New Zealand and that will make the cost significantly less than what it would be in the US. “Keytruda was originally brought on the market for melanoma but even though its original indication was for melanoma, studies were being done for its use in other cancers, particularly NSCLC. “It is now being studied for other types of cancers. I say that because it is important to know that many of the new immunotherapies are being used in various other cancers. “Keytruda is also now known to be more effective in NSCLC when used with classical chemotherapy. “This information came out of the recent world-wide oncology conference (ACOG) in Chicago in June. “It is important to remember that cancer is not ‘a’ or ‘one’ disease, rather, as we are finding out more every day, a disease that is a normal cell that has mutated, that unless stopped will grow without interference. “Now, more and more we are able to look at the specific genetic traits of these cells and find ways to stop them,’’ said Dr McCallum. Praise for Gisborne Hospital He had high words of praise for Gisborne Hospital. “When I worked there, I was very happy with what we could do there and I think we did a very good job and I think they still do. “The nurses and support staff are fantastic and the doctors I worked with were caring and capable. “I have stated that to folks in Gisborne who thought maybe it wasn’t such a great place, we can always improve, but we have nothing to apologise for.” Dr McCallum said he understood and agreed with controls that had to be placed on expensive drugs like Keytruda. “However, when one has a patient like Alain, a non-smoker and someone who has lived a very healthy lifestyle, then he is the ideal patient. “Alain is an excellent candidate for Keytruda and, I would argue chemotherapy, as he is chemotherapy naive and has been in complete remission until recently. “Alain is one of the kindest, gentle and smartest people that I know, and he is a great fisherman.”
  24. An updated ASCO clinical practice guideline clarifies the appropriate use of immunotherapy and provides new recommendations on the use of targeted therapy for patients with stage IV non-small cell lung cancer. https://www.healio.com/hematology-oncology/lung-cancer/news/in-the-journals/{e2dd9827-3259-4b42-9154-b7828218d5f5}/asco-updates-guideline-on-systemic-therapy-for-non-small-cell-lung-cancer
  25. https://conquer-magazine.com/recognizing-treating-immunotherapy-side-effects/?utm_source=bronto&utm_medium=email&utm_term=Recognizing+and+Treating+Immunotherapy+Side+Effects&utm_content=Weekly+News:+The+Voice+Within&utm_campaign=2017-08-09-Conquer+etoc IMMUNOTHERAPY, SIDE-EFFECTS MANAGEMENT - JUNE 21, 2017 Recognizing and Treating Immunotherapy Side Effects By Wayne Kuznar Enthusiasm for immunotherapy in the treatment of cancer must be balanced with a healthy consideration of the power of T-cell activation, which can cause the immune system to overact and create new problems. Although the side effects of immunotherapy drugs are usually mild, they occasionally can be fatal and, therefore, should be treated without delay, according to Stephanie Andrews, MS, ANP-BC, a hospitalist specializing in medical oncology at Moffitt Cancer Center in Tampa, FL. Ms. Andrews discussed this topic at the 2017 conference of the National Comprehensive Cancer Network (NCCN). “Most immune-related adverse events occur within the first 6 to 12 months of therapy, though many may occur days, weeks, or months, or even after discontinuation of therapy,” said Ms. Andrews. However, some “immune related toxicities may be fatal, and delaying adequate care could lead to poor prognosis,” she said. Therefore, patients who are receiving immunotherapy drugs should consult with their doctor immediately if any side effect occurs. Common Side Effects of Immunotherapy The most common side effects associated with immunotherapy are inflammatory conditions that can affect different parts of the body. Skin conditions are the most common side effects associated with immunotherapy drugs, which include checkpoint inhibitors or monoclonal antibodies, and can occur early in the treatment course. Many of these side effects are skin conditions, but they can also affect any organ systems, not just the skin. The side effects include: Dermatitis (skin rash) Enterocolitis (inflammation of the digestive system) Hepatitis (inflammation of the liver) Endocrinopathies (disorders of the endocrine glands) Nephritis (inflammation of the kidneys) Pneumonitis (chest pain, shortness of breath) Side effects such as colitis (inflammation of the colon), endocrinopathies, and liver-, lung-, or kidney-related side effects can occur later in the treatment course, and are less frequent than skin reactions. Who Is at Risk? Patients with cancer who also have other medical conditions (for example, diabetes or heart disease) are at a greater risk of having side effects with immunotherapy than patients who don’t have other medical conditions. In addition, patients who are older than age 60 are at a greater risk than younger patients for side effects of immunotherapies. Immunotherapy-Related Endocrinopathies and Colitis Most side effects can be easily treated and resolved, according to Ms. Andrews. “However, endocrinopathies may or may not be permanent,” she said; this particular side effect can be difficult to treat. The symptoms of immunotherapy-related endocrinopathies are vague and difficult to diagnose, in part because they can occur with many other conditions. These symptoms include: Changes in weight Changes in mood or behavior Constipation Deeper voice Fatigue Feeling warmer or colder than usual Hair loss Increased hunger or thirst Persistent or unusual headache Management of Skin-Related Side Effects The management of adverse reactions associated with immunotherapy (checkpoint inhibitors) depends on the grade of symptoms. In the case of skin-related side effects, doctors should follow the most recent NCCN melanoma guideline. For example, Yervoy (ipilimumab) can be continued to be used for grade 1 skin adverse reactions, while treating the symptoms; stopping Yervoy use is recommended for grade 2 skin adverse reactions; and discontinuing the drug and using steroids is recommended for grade 3 to 4 skin-related side effects. The checkpoint inhibitor Opdivo (nivolumab) should be withheld for grade 3 skin side effects, with resumption when the reaction returns to grade 0 or 1. Permanently stopping Opdivo is recommended for grade 4 skin rash. In addition, using prednisone 1 mg/kg to 2 mg/kg daily is also recommended. Keytruda (pembrolizumab) is another checkpoint inhibitor and has similar recommendations for treating skin side effects. Other immunotherapy drugs can be considered if grade 3 or 4 skin toxicity is not controlled with corticosteroids. This strategy is advisable for steroid-refractory side effects that are responding to steroids with any of the checkpoint inhibitors. Dose reductions of immunotherapy are not recommended. Instead, Keytruda should be withheld or discontinued and another immunotherapy used. Overall, a slow reduction of the steroid (for a minimum of 4 weeks) is advised. Tecentriq (atezolizumab) is another immunotherapy that can also have immune-related side effects similar to the other immunotherapy drugs. Opdivo should be stopped when grade 2 adrenal insufficiency occurs, and permanently discontinued for grade 3 or 4 adrenal insufficiency, whereas Keytruda and Tecentriq can continue to be used with grade 2 adrenal insufficiency, but should be stopped when grade 3 or 4 side effects occur. Another symptom with immunotherapy is hypothyroidism; if this occurs, thyroid therapy is needed, but without changing the dose of the checkpoint inhibitor (immunotherapy), unless the hypothyroidism is grade 3 or 4, in which case skipping a dose of the immunotherapy is recommended. Using Steroids for Immune-Related Side Effects “Because immune checkpoint inhibitors are being used for cancer treatment more and more, healthcare professionals should be familiar with the distinct side-effect profile of each of these drugs,” said Myint A. Win, MD, Department of Emergency Medicine, M.D. Anderson Cancer Center in Texas, at the 2017 NCCN meeting. “Management of these adverse events depends on grade and severity. We take it on a case-by-case basis. If the adverse event is severe, we stop the immune checkpoint inhibitor and start steroids. If it is mild, we observe the patient,” Dr. Win added. Discussing the use of steroids to treat these side effects, Ms. Andrews said, “We need to remember that steroids are not without side effects of their own, so gastrointestinal prophylaxis, as well as opportunistic infection prophylaxis is necessary.” Steroid use for treating immune-related side effects does not affect the treatment outcomes. Blood sugar levels should also be checked in patients who receive steroids while using immunotherapy. The NCCN guidelines suggests the use of Remicade (infliximab) as the preferred drug for treating colitis associated with immunotherapy that does not respond promptly to high-dose steroids. The treatment of other immune-related inflammatory adverse events also relies on the use of systemic steroids. Helpful Tool The NCCN has developed a tool for patients and for doctors and other providers that can help to educate people and those who treat or monitor patients who are getting immunotherapy. The tool is available at www.NCCN.org. Separate sections of the tool have been constructed for patients and for healthcare professionals, listing specific adverse events and their symptoms. Patient Resources NCCN Immunotherapy Teaching/Monitoring Tool www.nccn.org/immunotherapy-tool/pdf/NCCN_Immunotherapy_Teaching_Monitoring_Tool.pdf American Cancer Society www.cancer.org/treatment/treatments-and-side-effects/treatment-types/immunotherapy.html National Cancer Institute www.cancer.gov/about-cancer/treatment/types/immunotherapy
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