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Found 11 results

  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. Hi. My mom was recently diagnosed with lung cancer, well, they did a biopsy and found cancer in her lung. we don't know yet the stage or origin. she is a long time smoker, but only 53. I am really hoping they found it early, even though I know that is rarely the case. My question today is she has an appointment set and it lists 3 different departments she is meeting with. Radiation/Oncology, Hematology/Oncology, and behavioral medicine. the radiation oncology is obvious , but can anyone tell me what roles the other 2 have in treatment of lung cancer ?
  3. Hi everyone! My dad was diagnosed in 2011 with IB adenocarcinoma. Underwent wedge resection, without need for chemo or XRT. Fast forward to 2016, when he underwent a CT scan to check on his (for now) stable aortic aneurysm, and they discovered 3 enlarged lymph nodes. Found to have IIIB adenocarcinoma. Underwent chemoXRT. PET in Oct revealed excellent response to the chemoXRT, however, we unfortunately missed the "curative intent" boat, as the cancer had already spread to the liver (too numerous to count), possible bony mets and possible lung nodules. So far, he had been asymptomatic entirely, outside of the side effects from the chemoXRT. He does not have your typical mutations, so onc recommended starting Opdivo, as he feels it works just as well, if not better than, standard chemo with fewer side effects. The jury is still out regarding Opdivo, as he's only had one infusion. As soon as he had the infusion, he immediately started feeling symptomatic, unclear if it's from the disease or the tx. Substantial increase in fatigue, dysguesia, queasiness, and feverish. I'm not even sure he has the PDL-1 expression. Anyway, I'm asking about BRCA1 and CDKN2A mutations. Does anyone know much about these? The doc felt that if Opdivo doesn't work, we could potentially try olaparib or palbociclib instead. These have been approved as targeted therapies for recurrent ovarian and I think breast cancer. I haven't found much research on lung, except for ongoing some clinical trials in SCLC. Does anyone have any information, either anecdotally or clinically, about these mutations and using the other drugs? Thanks so much! By the way, I'm getting married in January, and in lieu of gifts, my fiancé, sister, and brother in law have decided to donate money to this awesome organization. We are hoping we can contribute to a path toward better treatment options.
  4. I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends. I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver. In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try. At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years. During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing. That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested. In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen. I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung. This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront. In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible. After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure. I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing. So I know if I post my treatment plans I will hear from someone if I am off track. I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority. I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available. Since my girlfriend Penny Blume passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients. My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA. I was able to connect with Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease. When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live. It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest. Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family. My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you. Be well, Don Stranathan Stage 4 Lung Cancer Survivor
  5. In addition to the resources listed at the bottom of this article, we recommend the LUNGevity Clinical Trial Finder. Cancer immunotherapy is moving fast. Here’s what you need to know. By Laurie McGinley | September 28 The idea of using the body's immune system to fight cancer has been around for a century, but only in the past half a dozen years have dramatic breakthroughs begun rocking the medical world. "That's when the tsunami came," says Drew Pardoll, director of the Bloomberg-Kimmel Institute for Cancer Immunology at Johns Hopkins University, and those advances are spawning hundreds of clinical trials nationwide, plus generating intense interest from patients, physicians and investors. Many cancer researchers compare the progress to medical milestones such as the discovery of penicillin or the development of chemotherapy. Over the next decade, the growth in the field will be "exponential," predicts Philip Greenberg, head of the immunology program at the Fred Hutchinson Cancer Research Center. "Making something better is enormously different than making something work that doesn't work." At the same time, researchers remember the past anti-cancer efforts that fizzled after initially showing promise. That explains the consensus sentiment at this week's international immunotherapy conference in New York: Turning science into cures will take years of perseverance against daunting hurdles. Here's a primer about new treatments and how they work: What is cancer immunotherapy? Immunotherapy is a significantly different approach from conventional treatments such as chemotherapy or radiation. The latter attack the malignancy itself, while immunotherapy aims to empower the immune system to kill it. Because of the immune system's unique power, says the nonprofit Cancer Research Institute, this therapy could prove a formidable weapon against many kinds of cancer and offer long-term protection with reduced side effects. Which immunotherapies are sparking excitement? Two types of immunotherapy are drawing most of the interest: checkpoint inhibitors, which remove "brakes" from the immune system, allowing it to see and go after cancer; and CAR T-cell therapy, which involves a more customized attack. "Checkpoint" inhibitors are designed to block the ability of certain proteins to blunt or weaken the response of the immune system so it can't recognize and go after abnormal cells. In normal times, such checkpoint proteins keep the immune system from being too aggressive and damaging the body. But cancer sometimes hijacks them and uses them to suppress the immune system's response to disease. [Immunotherapy shows promise in increasing numbers of cancers] The Food and Drug Administration has cleared four checkpoint inhibitors for adults: Yervoy, also known as ipilimumab; Keytruda, or pembrolizumab; Opdivo, or nivolumab, and Tecentriq, or atezolizumab. The drugs are approved for malignancies including melanoma and Hodgkin lymphoma, as well as lung, kidney and bladder cancer. The treatments also are being tested in a wide range of other cancers. Former president Jimmy Carter was treated with Keytruda, surgery and radiation for advanced melanoma last year. He announced in December that all signs of his cancer had disappeared. In CAR T-cell therapy, T cells — a key part of the immune system — are removed from a patient, genetically modified in the lab to target a specific cancer and infused back into the person. This treatment, available only in clinical trials, is being tested mainly for leukemia and lymphoma. The Food and Drug Administration is likely to approve the first CAR T-cell treatment next year or in 2018. Of these two immunotherapy approaches, most research and investor interest is focused on checkpoint inhibitors. That's because they are off-the-shelf treatments that are much easier to administer than customized T-cell therapy, said Crystal Mackall, a former National Cancer Institute researcher who's now leading immunotherapy trials for Stanford University School of Medicine. What are some of the main challenges in immunotherapy? Among the biggest challenges are increasing the response rate among patients and turning initial responses into long-lasting remissions. CAR T-cell therapy often produces a high remission rate in blood-disorder trials, but a significant percentage of patients relapse. Checkpoint inhibitors induce responses — signaling a tumor has been shrunk or stabilized — in an average of just about 20 percent of patients, said oncologist Elizabeth Jaffee, the deputy director of the Sidney Kimmel Comprehensive Cancer Center at Hopkins. Researchers need to understand why only some cases and some cancers respond. Why, for example, the treatment benefits melanoma but not pancreatic cancer. They think the key to improving effectiveness will be coming up with combination treatments, as happened with AIDS. Jaffee points out that the tide was turned against that disease only after researchers figured out how to use a "cocktail" of medications to keep people with HIV from developing AIDS. Nationwide, combination trials are testing the simultaneous use of two or more checkpoint inhibitors, a checkpoint inhibitor with a CAR T-cell therapy or an immunotherapy plus radiation and chemotherapy. But combining these can increase safety risks. Jill O'Donnell-Tormey, chief executive of the Cancer Research Institute, said researchers also are trying to understand tumors' "micro-environments," which contain cells and other factors that appear to sometimes suppress the immune system's response to cancer. The institute, along with the American Association for Cancer Research and two European groups, sponsored the three-day conference in New York. What are immunotherapy's downsides? By revving up the immune system, immunotherapy can cause sometimes serious damage to healthy tissue and organs. Researchers are working on ways to limit or even reverse the potential toxicity, but much work needs to be done. CAR T-cell therapy poses two types of safety risks. Almost all patients get sick with flu-like symptoms, including high fever and pain, a week or so after the treatment; some end up in intensive care. The treatment also can cause brain swelling that can be fatal. [How cancer thwarts immunotherapy] Yet standard treatments have major side effects as well. Chemotherapy and radiation, when used for children with leukemia, can cause long-term problems such as secondary cancers, infertility and heart damage. In many ways, researchers say, immunotherapy is less toxic over the long term and might eventually be a good first-line alternative to chemo and radiation. Immunotherapy can carry higher price tags. For example, Merck's checkpoint inhibitor, Keytruda, costs about $150,000 a year. Once CAR T-cell therapies are approved by the Food and Drug Administration, they may cost hundreds of thousands of dollars a year, according to some analysts. If the treatments are used as directed by the agency, chances are good that insurance will pay for at least some of that. Does immunotherapy work for children? Immunotherapy in kids is a mixed picture. Checkpoint inhibitors are only now being tested extensively in children, so it will take time to see how well they work. But very early-stage studies suggest that they may not be as effective as in adults. One theory holds that these drugs work better in cancers with many mutations — and pediatric cancers tend to have many fewer mutations. CAR T-cell treatment, on the other hand, is being widely tested in children and has shown impressive effectiveness against acute lymphoblastic leukemia, the most common childhood leukemia. How do I find immunotherapy treatments? Talk first to your doctor, who should be able to help you find appropriate medication or clinical trials for unapproved treatment. Trials sponsored by the National Cancer Institute can be found at trials.cancer.gov. Studies also are listed on the website ClinicalTrials.gov --though that doesn't signify government endorsement or approval. Another resource is the Cancer Research Institute's Clinical Trial Finder. This story was published on washingtonpost.com on 9/28/16. Link: https://www.washingtonpost.com/news/to-your-health/wp/2016/09/28/cancer-immunotherapy-is-moving-fast-heres-what-you-need-to-know-now/
  6. TUESDAY, Sept. 20, 2016 (HealthDay News) -- A leading cancer group says more Americans are benefiting from immunotherapy -- a relatively new treatment approach that helps the immune system target and destroy cancer cells. "The promise of immunotherapy for cancer therapy has never been greater, and the opportunity to make significant progress in this critical area is real," said Dr. Nancy Davidson, president of the American Association for Cancer Research (AACR). The AACR issued the news on immunotherapy as part of its 2016 Cancer Progress Report. As the group explained, more types of cancer are being successfully treated with immunotherapy. This treatment involves adding new cancer-fighting cells to the body or adding new elements, such as antibodies and proteins, to help the immune system fight cancer. In August 2015, one class of immunotherapy drugs -- called checkpoint inhibitors -- was approved for just melanoma and lung cancer, the AACR noted. About a year later, these drugs were subsequently approved for four more types of cancer, including bladder cancer, head and neck cancer, Hodgkin lymphoma and kidney cancer. In fact, immunotherapy drugs account for four of the 13 new anticancer treatments approved over the past year, the AACR report showed. New uses have also been found for 11 previously approved anti-cancer drugs. But that's not the only cancer advance to occur over the past 12 months, the AACR said. A new cancer screening test, two new imaging agents to help diagnose cancer and a new medical device were all approved by the U.S. Food and Drug Administration, the AACR noted. All of these treatments are helping cancer patients survive longer and improving their quality of life, the AACR said. The progress report also revealed that an estimated record 15.5 million cancer survivors are now living in the United States -- an increase of 1 million people between 2014 and 2016. Despite these advances, cancer continues to place a significant burden on patients and their loved ones. The AACR report projects that more than 595,000 people in the United States will die from cancer in 2016. The number of new cancer diagnoses is expected to jump from 1.7 million in 2015 to 2.4 million by 2035. Cancer is also the leading cause of disease-related death among American children. Meanwhile, older people, poorer Americans, certain racial and ethnic groups, and those living in certain areas suffer disproportionately from the disease, the AACR noted. The direct medical costs associated with cancer are expected to surge to $156 billion in 2020 -- up from $125 billion in 2010. The AACR report urges that the pace of progress in cancer research be accelerated with the help of ongoing U.S. government support, including consistent annual funding increases for the National Institutes of Health, the National Cancer Institute, the FDA and the National Cancer Moonshot Initiative. "Research has made tremendous advances against cancer," Dr. Margaret Foti, chief executive officer of the AACR, said in an association news release. "However, we need to accelerate the pace of progress because it is unacceptable that one American will die of cancer every minute of every day this year." "And in fact, if the necessary funding is provided, we will accelerate the pace of progress and, in turn, markedly reduce morbidity [illness] and mortality from cancer," said Davidson. This story was published on usnews.com on 9/20/16. Link: http://health.usnews.com/health-care/articles/2016-09-20/more-cancer-patients-gaining-from-immune-based-treatments
  7. On August 17, LUNGevity hosted a webinar with Dr. Julie Brahmer to discuss recent clinical trials in immunotherapy drugs. These trials have stimulated a lot of discussion in the lung cancer community. The webinar was moderated by LUNGevity's Vice President of Support & Surivivorship, Katie Brown. Dr. Julie Brahmer is an immunotherapy expert at Johns Hopkins and a member of LUNGevity Scientific Advisory Board. Dr. Brahmer is an expert in the use of immunotherapies to treat lung cancer. She has spearheaded numerous clinical trials for the immunotherapy of lung cancer, including the pioneering trial that led to the approval of nivolumab in the second-line setting for advanced-stage lung cancer. Dr. Brahmer is the director of the Thoracic Oncology Program at the Johns Hopkins Kimmel Cancer Center. She is also a member of LUNGevity’s Scientific Advisory Board. To listen to the webinar and to read the follow-up blog written by LUNGevity's Director of Science Communications, Dr. Upal Basu Roy, please click here.
  8. Immunotherapy Virtual Roundtable Update and Discussion Join us for a webinar on Aug 17, 2016 at 7:00 PM EDT. Register now! https://attendee.gotowebinar.com/register/1131249407449233668 Virtual Roundtable Update and Discussion on Immunotherapy: An interactive discussion about the potential of lung cancer immunotherapy, and the significance of recent clinical trial results with lung cancer expert, Dr. Julie Brahmer, MD. This is a free live interactive webinar hosted by LUNGevity Foundation. Registration is required. After registering, you will receive a confirmation email containing information about joining the webinar. View System Requirements
  9. Dad went for 12 week checkup today - has been on Opdivo and has been feeling pretty good. However, he hasn't been on any chemo yet. Everything I read about Opdivo says that it is for "those who have previously been on platinum-based chemo." The doctor, who has been the only oncologist that my Dad has seen, seemed to think that Dad had been on some chemo previously. I'm concerned that the doctor hasn't been paying attention, since he never prescribed chemo, just Opdivo - and I'm worried about what the concequences of having not had chemo on his prognosis. Any thoughts from the group?
  10. Dr Carbone will be doing his FIRST ever twitter chat today with LUNGevity. We will be talking immunotherapy and he's answering your questions starting at 3pm eastern www.twitter.com/lungevity keep in mind he's brand new to Twitter (@DCarboneMD) so your patience is appreciated. Spread the word !
  11. LUNGevity Foundation Applauds FDA Approval of Immunotherapy Drug Opdivo Print this page New Therapy Will Harness the Power of Patients’ Own Immune Systems to Fight Lung Cancer FOR IMMEDIATE RELEASE Media Contact: Aliza Bran abran@susandavis.com (202) 414-0798 WASHINGTON (March 2015) – LUNGevity Foundation, the nation’s leading lung cancer nonprofit, applauds the Food and Drug Administration’s (FDA) approval of Bristol Myers Squibb’s new immunotherapy drug Opdivo (nivolumab). Opdivo and other immunotherapy treatments add another critical new treatment option to fight lung cancer by harnessing the power of a patient’s own immune system to fight cancerous cells. Importantly, this drug has been approved specifically for patients with squamous cell lung cancer, a population for which there have been few new treatment options. “The FDA approval of Bristol Myers Squibb’s new drug Opdivo is an important step in bringing this game-changing treatment to patients nationwide,” said Andrea Ferris, president and chairman of LUNGevity Foundation. “We are thrilled to have a new tool in the kit of treatment options for our lung cancer community. There is still a lot of work to be done in understanding the true impact of the treatment over the long term, but this is a very exciting development.” LUNGevity has been an ongoing investor in accelerating promising and innovative lung cancer research that helps find and treat the disease more effectively, including in the expanding field of immunotherapy. “Immunotherapy is transforming the lung cancer treatment paradigm, providing the most promising option yet in the second-line treatment for squamous cell lung cancer patients,” said Dr. Julie Brahmer, MD, LUNGevity scientific advisory board member and thoracic cancer director at Johns Hopkins Kimmel Cancer Center, and associate professor of oncology at Johns Hopkins. “There’s still work to be done to determine which immunotherapy can best help which patient and which treatment combinations are most successful. The results of the Opdivo trials show the critical importance of lung cancer research and the extraordinary power of collaboration of researchers, physicians, and patients. The concurrence of patient and research interests has expedited the process behind this treatment from basic research to clinical trials to the initial step toward immunotherapy existing as the primary treatment for lung cancer. This is just the tip of the iceberg.” Dr. David Carbone, MD, PhD, LUNGevity scientific advisory board member and director of the thoracic oncology center at The Ohio State University, concurs. “The revolutionary new field of immunotherapy has completely transformed the way we treat and understand the disease. While not a panacea for everyone, immunotherapy is a quantum leap for lung cancer treatments, and will only show more promise as research continues to unveil innovative and exciting ways to tap the potential of this therapy.” For more information on LUNGevity Foundation, please visit www.LUNGevity.org. About Lung Cancer 1 in 15 Americans will be diagnosed with lung cancer in their lifetime More than 221,000 people in the US will be diagnosed with lung cancer this year About 60% of all new lung cancer diagnoses are among people who have never smoked or are former smokers Lung cancer kills more people than the next three cancers (colorectal, breast, and pancreatic) combined Only 17% 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. http://lungevity.org/about-us/media-resources/news-from-foundation/lungevity-foundation-applauds-fda-approval-of
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