CindyA

Immune checkpoint inhibitors targeted against PD-1 and its ligand PD-L1 have rapidly advanced as treatments for patients with melanoma and non–small cell lung cancer (NSCLC), following their initial debut in 2012. In the past 4 months alone, the PD-1 inhibitors nivolumab (Opdivo) and pembrolizumab (Keytruda) have each gained separate approvals as treatments for patients with advanced melanoma. Additionally, in mid-January, phase III findings from the CheckMate-017 study demonstrated that nivolumab extended overall survival compared with docetaxel in patients with pretreated squamous cell NSCLC. Based on these findings and those from phase II studies, Bristol-Myers Squibb (BMS) is currently in the process of submitting a New Drug Application to the FDA for nivolumab as a third-line treatment for patients with squamous cell NSCLC. Furthermore, several phase III studies are currently examining the agent across a variety of tumor types. Julie R. Brahmer, MD, and Suzanne L. Topalian, MD, presented seminal research on PD-1/PD-L1 inhibition at the 2012 ASCO Annual Meeting. Results from these studies laid the foundation for future advances and shaped the development of PD-1 inhibition in cancer. In an interview, Brahmer, the interim director of the Sidney Kimmel Comprehensive Cancer Center, spoke with OncLive about the rapid development of PD-1/PD-L1 inhibition and her thoughts on the future of this novel treatment approach. - See more at: http://www.onclive.com/web-exclusives/Brahmer-Expects-Rapid-Approval-for-First-PD-1-Inhibitor-in-Lung-Cancer?utm_source=twitterfeed&utm_medium=twitter#sthash.Z9AdLFqa.whBiAwDH.dpuf

The study was supported by funds from the National Cancer Institute, the U.S. Department of Veterans Affairs, and the LUNGevity Foundation. http://www.ascopost.com/ViewNews.aspx?nid=22589 Among patients who had an unidentifiable lung nodule detected by a chest computed tomography (CT) scan, testing sputum for a panel of three microRNA (miRNA) biomarkers successfully distinguished early-stage lung cancers from nonmalignant nodules most of the time, according to a study reported by Xing et al in Clinical Cancer Research. “We are facing a tremendous rise in the number of lung nodules identified because of the increasing implementation of the low-dose CT lung cancer screening program,” said Feng Jiang, MD, PhD, an Associate Professor in the Department of Pathology at the University of Maryland School of Medicine in Baltimore. “However, this screening approach has been shown to have a high false-positive rate. Therefore, a major challenge is the lack of noninvasive and accurate approaches for preoperative diagnosis of malignant nodules. Study Details “Our work may help address this important clinical challenge,” continued Dr. Jiang, who is also a researcher at the University of Maryland Marlene and Stewart Greenebaum Cancer Center. “We developed and validated a panel of three miRNA sputum biomarkers—miR-21, miR-31, and miR-210—that have the potential to help find lung cancer among indeterminate solitary pulmonary nodules that are initially found by CT scan. However, before these results can be translated into the clinic, we need to identify other biomarkers to add to the existing panel, to increase its sensitivity and specificity, and we need to evaluate the panel in a prospective clinical trial.” Sensitivity and Specificity Results Dr. Jiang and colleagues first tested the miRNA sputum biomarker panel in a group of 122 patients identified by chest CT scan to have a lung nodule. The test identified the 60 patients found to have lung cancer by invasive testing with 82.93% sensitivity and 87.85% specificity. This means that the test correctly predicted 82.93% of the time that a person with lung cancer had lung cancer, and that it correctly predicted 87.85% of the time that a person without lung cancer did not have the disease. In two independent groups of 136 and 155 patients with a lung nodule, the three-miRNA sputum biomarker panel had a sensitivity and specificity of 82.09% and 88.41%, and 80.52% and 86.06%, respectively. “These values for sensitivity and specificity are not high enough for the three-biomarker panel to be used in the clinic,” said Dr. Jiang. “Because the specificity is only 87%, we cannot be certain enough that a patient does not have lung cancer. To be nearly certain whether a patient does or does not have lung cancer, the specificity of a test should be close to 100%.” “We are now applying new technologies to identify additional miRNA sputum biomarkers of lung cancer with the goal of expanding our biomarker panel to generate a test with high efficiency that can be practically used in clinical settings for lung cancer early detection,” added Dr. Jiang. Feng Jiang, MD, PhD, of the University of Maryland School of Medicine, is the corresponding author for the Clinical Cancer Research article. The study was supported by funds from the National Cancer Institute, the U.S. Department of Veterans Affairs, and the LUNGevity Foundation. The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.

I thought I would open today's air. January hasn't started out with an upbeat. So I wondered if you would all share what song you listen to when you are feeling down, that absolutely makes you want to get up and dance and for a minute helps you find some peace an happiness?

Hi Kakalina, Thank you for sharing with us. This is a great community to share, vent, and get HOPE. Welcome to LCSC. . I'm glad your husband is finding relief by taking his medication as directed. Please keep us posted on how you both are doing. Sending you healing and positive thoughts. We are here for you.

Crossing my fingers! I look forward to your future updates.

Hi Karen, I wish I lived in Florida today! It's so cold here in Dallas. I'm glad you are at a place where they treat you nicely. That's necessary! I wanted to share a link with you concerning Clinical Trials. LUNGevity partners with EmergingMed, a clinical trials matching service, to help you with the decision of whether to participate in a clinical trial. EmergingMed helps you identify which lung cancer clinical trials you may be eligible for. The clinical trial navigators can also guide you through the process of getting enrolled if you choose to take part in a clinical trial. Clinical trial navigators are available Monday through Friday from 8:30 am to 6:30 pm ET at 800-698-0931. Learn more about this free service and even fill out an online profile at http://www.emergingmed.com/networks/LUNGevity/ Please keep posting!

Welcome to the group Karen. I'm sorry you've had such a long journey. We are here for you. Feel free to "lurk" as much as you like. I believe everyone here has something to gain from each other. Thank you for sharing your story. Please keep us posted on how you are doing. Sending you positive and healing thoughts.

Welcome to the message boards. Everyone on here is so welcoming and supportive. I'm so glad to hear that you have a great support team. If you want to be connected to someone one-on-one who has had a similar experience to yours please reach out to our LifeLine program as well. Please keep posting and keep us updated on how you are doing. Thank you for sharing your journey with us. http://lungevity.org/support-survivorship/get-connected/lungevity-lifeline

Hi Steve, Welcome to LCSC. Thank you for sharing with us. I will send positive thoughts your way. I hope you will continue to update us with how you are doing. This is the perfect place to share your worries, happy times and vents. Everyone on here is very welcoming and understanding. Best, Cindy

Lung Cancer Caregiving Jamie Shull We all know the preflight instructions before an airplane takes off. It’s something to the effect of donning your oxygen mask before helping others in your care. I believe those simple instructions are an appropriate analogy for anyone caring for a loved one with a serious or chronic health issue. Take care of yourself so that you can adequately take care of those you care about. When the words “you have cancer” are spoken, the world changes forever for the person diagnosed and for everyone who loves them. Any cancer diagnosis is devastating but I think lung cancer is especially so. I believe strongly that this is due to lack of awareness and funding for research. Lung cancer can be difficult to treat and can be very aggressive. There is a misconception that lung cancer only affects smokers and that it is simply a “preventable disease”- that if you quit smoking or never start, you will be safe from ever getting lung cancer. I know first-hand how untrue that is. When one is thrust into the role of caregiver most often we don’t know what we need, let alone how to ask for help. We hear from people who offer sincere but vague offers of help (let me know if you need anything) while others completely disappear. Many times caregivers neglect their own needs and health because there is so much to do and only so much time. I know I did. In my husband’s 20-month struggle to live I learned many, many things. Let me share the most important things that I learned about caregiving: Most people want to help.....let them. Give people specific tasks that will help you (pick up the kids from school, help with taking my loved one treatment, come over for a couple of hours so I can leave, etc...). Ask someone to facilitate a meal preparation/delivery plan within your community of friends and loved ones. More than ever, it’s important for everyone in your house to eat healthy and there are much bigger things on your plate than planning/cooking meals every night. I think the most crucial lesson I learned was giving myself permission to get away from the situation and to take care of myself. It took me a long time to understand this and I teetered on the edge of sheer burnout several times. Getting away can be as simple as going to a movie, curling up with a book for an hour, going for a run, or whatever brings you energy. Doing things to nurture yourself is not selfish....it is about sustaining yourself for the long haul in the enormous task you have undertaken out of love. Find people who can listen, really listen, to what you are going through. For me that was certain close friends and a counselor who I could tell everything to- my fears, my panic and profound despair at the thought of losing the person I loved so very much decades too soon. I wish I’d also found a caregiver’s support group but there wasn’t one in my area at the time. When I asked about it, a social worker told me that caregivers are too busy and don’t have the time to meet- very telling. This may be the most challenging time of your life. You are stronger than you know. Never give up hope, for yourself or your loved one! Jamie Shull will be writing a series of caregiving blogs based on her experience as a lung cancer caregiver and advocate. Jamie is also a LUNGevity LifeLine Support Mentor and shares her insight and resources to help others co-survive lung cancer. Please leave your comments and topic suggestions below. http://lungevity.org/support-survivorship/get-connected/blog/lung-cancer-caregiving

LifeLine support mentors meeting for the first time. Watch this video to see the importance of support for people diagnosed with lung cancer.

Welcome to LCSC. I hope you were able to get some answers. Please keep us posted.

Meals to Heal Nutritional Blog: Healthy Gifts They'll Love http://lungevity.org/support-survivorship/get-connected/blog/healthy-gifts-theyll-love

Welcome to the group dawn5798. We are here for you. I'm glad you read some of the others stories we have here and it gave you hope. You mentioned you are researching, LUNGevity has an "Ask the Experts" area on the website. Here is the link if you are interested in exploring: http://lungevity.org/about-lung-cancer/ask-experts Please keep us posted in how you are doing. If you have any questions, please feel free to reach out to me at anytime. calmendarez@lungevity.org

Here are some responses to your post we received within our Facebook group (https://www.facebook.com/groups/lcaware/10154878671780635/?notif_t=group_comment): Lysa Buonanno It's important to know all the potential side effects. Unfortunately my Dr says "radiation is the gift that keeps on giving." Meaning you may have long term side effects that appear many years later. I guess it depends on your goals and your overall health. For me personally, I still have a daughter to raise so I need to buy as much time as possible. For me it's about surviving right now. I can't worry about 10 years from now, even though I do, if I didn't do my radiation I might not be here now. It's a tough decision. I pray you find the right one for you A Brewster Smythe I recently read about the Cleveland Clinic's Cardio-Oncology Departments ideas about the relationship between cancer treatments and heart damage- I was able to download a free ebook concerning these isssues. You might want to go to this site:http://my.clevelandclinic.org/.../departm.../cardio-oncology Laura Harrington The worst side effect I have received from rad to my lung is the scar tissue that is left behind, it has taken several months for the soreness and pain to be minimual. They also had be do 10 rads of preventitve to the brain now that one I will never let them do again. Jennifer Surles My husband is in ICU on a ventilator right now and they believe it is due in part to radiation pneumonitis which he got during treatment. Normally it doesn't occur until one to six months after treatment. He's not expected to make it so make sure you know ALL of the possibilities going in Heather Hanusiak Hogan I agree with Lysa Buonanno and Laura Harrington. After 25 treatments, I have scar tissue that gives me a lot of indigestion and causes me to be short of breath at times.(I've also had my bottom right lobe removed.) This is tough enough but I wasn't ready to risk not doing it but that's just my opinion. G Alan Rader There are choices of radiation equipment, CyberKnife is still state of the art in targeting and minimal collateral damage. Higher dose, way fewer treatments. Laura Harrington There has been wide success rate with Proton Rad, its expensive and a new center is openings in 2016 in Dallas. But there are others I hope you read about it. Bernardine Johnson I went radiation treatments. I have minimal. muscle soreness, scar tisse in my lung, esophagus, and heart. I have some indestion

I hope you all had a great day full of love and great food!

Have you seen the new look of the Foundation's website? Click here to take a peek: www.LUNGevity.org

Dr. Esch talks about what palliative care is and what it isn't. Learn how palliative care can help from the moment of diagnosis. [sHARE]

November 19th, 2014 - by Katie Brown If you’re supporting people impacted by cancer because of your own personal experience, you have an acute insight that not all people possess. You understand a little better. You listen and hear a little more. You have walked that walk in that patient or caregivers shoes. If you have chosen to support people impacted by cancer you have chosen to lead with your heart. One thing is for certain; your heart will be broken. It will break many many times when you lose the people you grow to care about…so why would you choose to do it? People have asked me dozens of times over the last 11 years why I chose this path of supporting people with lung cancer that sometimes leads to loss and incredible sadness. I feel like the moment my dad was diagnosed my path was chosen for me. Everything in my life changed and I changed with it. I also chose to make something out of my situation and experience. I wanted to make my losses meaningful in some way and I knew I could make a difference and honor and remember the people I cared about at the same time. As a cancer survivor myself, I felt an obligation to give back to others and help clear a path for those who were diagnosed with cancer. It’s taken me a very long time to accept that not all people feel the way I do. I’ve met many people who say they want to make a difference, but their actions speak louder than their words. They don’t do anything. They aren’t proactive. They don’t seek opportunities and sometimes they make commitments or promises they just don’t keep. I’ve also seen families, survivors and advocates walk away. I’ve seen energetic and motivated people whose dedication-light was extinguished with the loss of someone they had grown to care for. I’ve even seen members of a support group disappear because they didn’t want to “be” in that space emotionally…they choose to put cancer out of their lives and out of their heads and move on. That’s not wrong. To each their own. We all have heart limitations. Still, I can’t help but feel a little disappointed when I see that happen. There are so few people advocating for people with lung cancer. What continues to inspire me are the hearts of some people I’ve had the honor of meeting and working with. These people are actually fueled by those losses to DO more, CARE more and reach out to MORE people. All in the hopes that one day the scale will tip and there will be more survivors than not. And in the process they have made the lives of others, however cut short, better, easier and more peaceful. Are you one in a thousand or are you one out of a thousand? Those impacted by lung cancer need others who can raise awareness, advocate on their behalf, offer support, guidance, information and friendship. I always think to myself when I meet someone new: What if this were me? What if it was my loved one? Wouldn’t I want someone to be there for them? So I am. Lung cancer can be ugly. Supporting those with it- either as a medical professional, advocate or caregiver, can be incredibly beautiful. Supporting Others with Cancer [Comment below and tell us who you're fighting for] [sHARE] if you support someone with cancer.

Date: Wednesday, December 3, 2014 Time: 4:00 PM - 6:00 PM Address: 520 Country Club Road Eugene, OR 97401 United States http://action.lung.org/site/Calendar?id=110841&view=Detail

Matt Ellefson’s cancer journey began in the fall of 2009 with a cough that he chalked up to seasonal allergies. But the cough lingered, and one morning he woke up coughing up blood. “A few hours later I found myself in a hospital bed with a diagnosis of advanced lung cancer,” he says. His doctor told him that, without treatment, he could expect to live eight months and, even with treatment, his five-year survival rate was less than 5 percent. Rather than surrender to his disease, Ellefson decided to wager on those grim odds and began treatment, which gained him a year in remission. But in 2011 the cancer came back, this time in a lymph node. Sitting in his oncologist’s office waiting to hear about his treatment options, Ellefson was checking e-mail on his phone when he came across information about a new drug that was just approved to treat lung cancer with the anaplastic lymphoma kinase (ALK) gene mutation. He asked his oncologist about the therapy, tested positive for the mutation, and began treatment. “I was shocked at how great I felt in a matter of two weeks,” Ellefson says. And shortly after starting treatment there, he says there were no signs of cancer in his body. New hope through new treatments Ellefson’s story is one that is becoming increasingly common as treatments evolve for lung cancer, which is one of the most challenging diseases to treat. Scientists now know that cancer is not one disease, but a collection of hundreds of different diseases, and they’re attempting to tailor their treatment approaches to the specific patients who might benefit. In 2003, scientists successfully mapped the human genome, which has opened new scientific learnings and opportunities for biopharmaceutical researchers to develop treatments that target cancers at the molecular level. Cancer takes a heavy toll Despite the numerous treatment advances, cancer still places a heavy burden on patients, their families, and society. It’s the second leading cause of death in the U.S., affecting one in every two men, and one in every three women, according to the American Cancer Society. And lung cancer ranks as the second most common type of cancer and the leading cause of cancer deaths. In fact, lung cancer kills almost twice as many women as breast cancer, and almost three times as many men as prostate cancer. More than 224,000 people will be told they have lung cancer this year, and 160,000 will die from the disease. Currently, only 16 percent of lung cancer patients diagnosed with disease survive for five years. But today’s oncologists have a growing arsenal of treatments to choose from. This includes new genetic tests that can help doctors uncover the root causes of a patient’s cancer and give individuals new ways to fight it. Advances here and on the horizon “I tell family and friends that if I had been diagnosed a year earlier than I had, I probably wouldn’t be here today,” Ellefson says. Other new treatments for lung cancer include: • Advances in treatment of non-small cell lung cancer (NSCLC), including treatments that target mutations of the epidermal growth factor receptor (EGFR) gene, which are present in about 10% of all patients with NSCLC. • Medicines that work by cutting off the blood supply that allows tumors to grow and thrive. • Nanotechnology and nanodrugs, which are on the order of one millionth of a millimeter in size, to deliver the therapy right to the tumor without affecting surrounding tissues. Holding out for future advances “When I started the targeted therapy in 2011, I was told on average that the drug would work for eight to 10 months before the cancer would become resistant to the drug,” Ellefson says. Ellefson had a complete response to the drug, and during the last 36 months, he has been able to effectively control his cancer while living an active and productive life. But today his doctors are better prepared than they would have been three years ago if his cancer does return. In the amount of time that this medication has added to his life, Ellefson says three new drugs have come into use that his doctor can use as an alternative if his cancer starts to become resistant to his current treatment. “It’s extremely important to be able to extend your life and keep the cancer at bay,” Ellefson concludes. And the journey that began in 2009 continues, with reason for continued optimism. http://www.washingtonpost.com/sf/brand-connect/wp/enterprise/taking-a-personalized-approach-to-a-deadly-disease/

November is Lung Cancer Awareness Month November 1st, 2014 - by Katie Brown Most people who aren’t directly affected by lung cancer won’t know what the month of November signifies. November means turkeys and holiday dinners and those after-Thanksgiving sales- but it’s also Lung Cancer Awareness Month (LCAM). Those of us who have been personally affected by lung cancer understand the importance of this month and advocates want to make others aware of this disease, the need for funding and support so that more people can survive it. While the month of October’s pink-out from pink pencils to pink porta-potties raises a lot of awareness about breast cancer, lung cancer advocates don’t see regular public service announcements about lung cancer or a deluge of participating businesses, celebrities and national marketing campaigns like those that feature the famous pink ribbon. LUNGevity is launching a campaign that will change the way people think about lung cancer. We are asking YOU to join us as we change how people learn about, treat and live with lung cancer. The month of November is a Call to Action to everyone impacted by lung cancer to unite and raise their voices. It’s a chance for us to educate and inform the general public about the epidemic of lung cancer, and to change how we talk about this disease. Here are some ways to take action: TAKE A PICTURE Download the lung cancer FACTS and post pics of yourself or someone else holding the printed message – in any location or situation- Photos can be creative, serious, clever, touching or hopeful. Then post it to Facebook, Twitter, Pinterest and/or Instagram using our LCAM campaign hashtag #changelc and then tag us @lungevity in every post so we can help share it too. Post frequently, and encourage your friends to post their photos too. SHARE OUR POSTS AND INFORGRAPHICS Share and repost our facts and infographics. Like our posts and share them during the entire month of November. Help us spread the word on social media about lung cancer and post about November being Lung Cancer Awareness Month on your social networking sites, email your friends and family, register to participate in a LUNGevity event and buy products that give back to lung cancer research SHARE YOUR STORIES You’ve been personally affected by lung cancer. You are a survivor, co-survivor, family member, friend or medical professional and your experience will touch others. Submit your story to LUNGevity and we may feature it on our blog, promote it over social media and use it to inspire change and hope in others. DISTRIBUTE MATERIALS LUNGevity can provide you with a toolkit and send you materials that you can distribute in your community to people, medical providers and facilities. Our brochures and wristbands will be displayed in many hospitals and clinics- check with yours to see if they need materials for LCAM. When my dad was diagnosed, the standard of treatment for his type of lung cancer hadn’t changed in over 40 years. He lived 11 months and 21 days after his diagnosis. He deserved a fighting chance and I miss him every day. Through research, education and support for those diagnosed with this disease, we can give people a fighting chance against lung cancer. I’m asking our supporters and everyone I meet, to spread the word about lung cancer. For me, LCAM is every month, but during November we make an extra effort, so that one day no one else will lose someone they love to this disease. Will you please help me spread the word? Tell someone that November is lung cancer awareness month. Take a picture and let’s make it viral. Share the facts about this disease and let people know that if they breathe, they can get lung cancer too. Distribute materials and volunteer or participate in programs and events. Join us as we change how people learn about, treat and live with lung cancer. Do it in honor of the 435 people who will die of lung cancer each and every day and the 220,000 people in America who are living with it. Do it for yourself and for someone you love because we are all at risk. http://blog.lungevity.org/2014/11/01/november-is-lung-cancer-awareness-month-2/

Live Long and Prosper October 30th, 2014 - by admin Introducing a new blog series- A Year in the Life of a Lung Cancer Survivor Bookmark our blog as we chronicle Jeff’s experience in bite size blogs posted once a week. “According to the notes I’ve kept scribbled on a pad by my desk, it’s been a year now. One year as a lung cancer survivor and I’m still kicking. I’m pleased to be here and glad to be offered the chance to share some of the events from my experience with lung cancer.” July 2013: I was at work early, as usual, that day, glad that my son’s baseball season was done for a few months and looking forward to our family vacation coming up in a couple of weeks. (cough) I was making a list of things that I needed to get done at the office before we left and thinking about the things I still had left to do at my dad’s house in Missouri. (We lost my father on May 25th after he spent 10 months on in-home hospice care and I had been working for nearly a year to dispose of several buildings full of accumulated “treasures”.) (cough) Our vacation was taking us to the Boston area and we were anxious to enjoy the cooler weather and see the sights in the northeast part of the country. (cough) “That does it.”, I thought to myself after another annoying little cough. I had been fighting this cough for about three months now. It never seemed to get worse and it never got better. It wasn’t bad enough to justify a visit to the doctor, I thought, but my wife, Diane, had been telling me that I needed to make an appointment and get something for it before we went on vacation, so at 8:00 AM, I called the office and scheduled a visit for that afternoon. After the normal routine of the medical exam and the back and forth questions that always go along with it, my family doctor could not find any definite cause for my cough and, almost as an afterthought, said that he wanted to get a chest x-ray. After completing the x-ray and giving me a precautionary prescription for some antibiotics, he sent me on my way with his customary salutation to, “live long and prosper.” (COUGH) http://blog.lungevity.org/2014/10/30/live-long-and-prosper/

Thank you Eric for advocating! If you get a recording of your interview, we'd love to hear it!

Thanks Randy! Are you interested in being a Social Media Ambassador? It just means you would share/like, posts that we have made over, Facebook, Twitter or other platforms. Think about it. I'd love to have you on the team. Email me if you are interested. calmendarez@lungevity.org