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  1. MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS Step 1 – Invest in sophisticated diagnosics before diagnosis If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening. Step 2 – Choose a good general practitioner Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there. Step 3 – Ensure your oncologist is a physician A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess. Step 4 – Learn about your disease At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions. Step 5 – Acquire a sanguine attitude quickly Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in! Step 6 – Any port in a storm There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm! Step 7 – Don’t believe the miracle cure The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment. Step 8 – Don’t try to tough it out I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too. Step 9 – Become a calendar maniac If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule. Step 10 – Choose to live When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage. Stay the course.
  2. The nature of the World Wide Web is the essence of its creators. We’ve made a conduit of ideas and information that chronicles every facet of human behavior and lots of non-human behavior. One can find a searchable version of the bible and then click to something that would be an embarrassing find in the bible. The Internet is encyclopedia, newspaper, entertainment, and abstraction all available with only one precondition, access. I was diagnosed with late-stage lung cancer in 2004. The Internet existed but people-to-people interactions were limited to mostly email. Nevertheless, the Internet allowed access to all kinds of information about lung cancer—some of it scholarly and some of it junk. As I recall, there was nothing resembling today’s cancer message boards where people could communicate, consult, and commiserate with one another. Today, there are many and I’ll reveal how one helped me recover from depression and find hope. In March 2006, I was in active third line treatment, infused Taxol and Carboplatin hardened by the oral chemotherapy drug Tarceva. After three failed surgeries and twelve failed chemotherapy cycles. My lung cancer was persistent and I was depressed. Watching TV on a Sunday afternoon in the throes of side effects, I saw a CNN broadcast interview with Phillip Berman, M.D. Phil was a radiologist, never smoker, and lung cancer patient who ironically was diagnosed about the same time as me. He started a cancer blog to keep friends and family informed about his treatment. It morphed into RedToeNail.org. I joined, thus starting my therapy online. Why does it work for me? First is recognition that I’m not alone. Cancer treatment is a slog through appointments and side effects. It is beneficial to be reminded that others are trudging that same ground. Next, these people understand my disease, its treatments and mistreatments. Moreover, they have useful tips and tricks that work! I recall to this day the suggestion I eat a steamed bowl of plain rice each morning before taking Tarceva. It laughed at Imodium, but respected the rice. Last, it is a channel for me to express my thoughts, ideas and uncertainties with people who completely understand. To say they’ve been there and done that is a vast understatement. They designed the tee shirt the experts purchased! Today’s Internet has many opportunities to connect survivors and caregivers. There is the ubiquitous thumbs-up symbol, short sentence reply, and emoji of popular social media platforms. This is fast-paced therapy connecting hundreds, perhaps thousands quickly. It is useful, but I prefer message boards. I like to take the time to read, reflect, and recall my experience when someone reaches out for help. Both, however, are effective. It is interesting to explore why. I’ve attended hundreds of cancer support groups. They are beneficial, but I well recall my first several sessions. Certainly I was made welcome, but the fear I had of my disease was bested only by the fear I felt talking about it. I’m a relaxed public speaker but not a public cancer speaker. As I grew comfortable with a group, I realized another downside. Regulars stopped showing up. The very nature of lung cancer makes support groups a population in decline. Moreover, treatment side effects always seemed to coincide with the support group meeting. People in treatment didn’t feel well enough to attend. I’ve also been an individual support resource both in person and telephonically. First meetings are a bit awkward but these can be very effective for both survivors. There is a shared experience and in every case, this led to a meaningful relationship. There is that same downside of the support group; lung cancer claims a life and now it is a life I was personally and emotionally connected to. It takes a very special constitution to provide survivor-to-survivor support and mine doesn’t measure up. So I work the message boards, mostly at the LUNGevity Forum but some others. I am relatively new to the LUNGevity Forum and it is fascinating to read the history of the survivors, year after year. Some move on to other activities but return after a long absence to a rousing welcome. Why? For exactly the same reason online support resources are so effective. We celebrate life. Stop by and say hello. Stay the course.
  3. Lisa Haines

    Covid and me

    This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient. I'm sure most of you can relate. COVID and Me By Lisa Haines When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so. Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020. Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now. As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this. Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time. That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year. Once the virus hit, I stopped doing all of these things. I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left. Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash. For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life. At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID. I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation. While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad. Currently, I have 5 airline tickets that are waiting for me to use. Every day I stay Stable I am hopeful that the time will come for me to be able to use them again. I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again. I look forward to the day that Covid is a bad and distant memory for all. It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways. About me: Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs. She is Mom to two amazing adult sons, one living locally in MA and one living in CA. She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer. Her grandchildren came into her life after her diagnosis and truly were a dream come true. At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life. They are now another huge inspiration in her cancer journey. She plans to be here for many years to watch them both grow up. Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son. She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB. Advocacy has become especially important to her and it’s something she wants to pursue long term.
  4. “I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”. These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there. I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed. The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too. My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure. Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything. The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona. After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place. When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer. Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.
  5. Becoming Empowered Advocates My wife, Heather, told me about LUNGevity National HOPE Summit and that she wanted to attend. She received a Travel Grant from LUNGevity and I decided to join her at the conference. It is one of the best things we ever did. The wealth of information about lung cancer available through LUNGevity is not comparable to anything I could find in Canada or through any Canadian organizations. LUNGevity is so caring, thoughtful, and cutting edge. Heather and I attended our first National HOPE Summit in 2016. It was so incredibly inspiring. We got to see first-hand that the statistics are just numbers, not individual expiry dates. The number of people in attendence was impressive and the conference was well organized. We met people from across North America who embodied hope and positivity. It felt like a family. The medical professionals at this event were amazing. They spoke with my wife and gave her their contact information if they could ever assist her in any way in the future. After that experience, I felt empowered to become an advocate and to get involved with awareness events with my wife in our home province of New Brunswick. I followed LUNGevity on Twitter and I joined the LUNGevity Caregivers group on Facebook. I started participating in a few of LUNGevity’s LC Caregiver Twitter chats, which are held the first Wednesday of every month. I utilized the #stopthestigma hashtag on Twitter whenever possible. I volunteered to be a LifeLine Support Mentor to provide peer-to-peer support to other caregivers, and I joined LUNGevity’s Social Media Ambassadors to help raise awareness online. My goal is to raise awareness of lung cancer as the number one cancer killer, taking more lives annually than breast, colorectal, and prostate cancers combined, while receiving the least amount of federal funding for research. I hope that my advocacy efforts will help other caregivers through sharing my experience, strength, and hope. Whenever I can, I join my wife in her advocacy work. It is important to us to stay educated on new treatments, research, and changes within the lung cancer community. We continuously meet with Federal and Provincial politicians to educate them about lung cancer, to lobby for equal access to health care, to promote genetic testing, and to demand equal catastrophic drug coverage in Canada. Heather lends her name and story to different publications to spread the word about lung cancer. Through social media, she has connected with doctors and research scientists across Canada to support their requests for research funding. The most recent was through a connection with a very passionate doctor at the Dalhousie University Research Foundation. I hope to help educate the greater public that if you have lungs, you can get lung cancer. It’s not “just” a smoker’s disease and smoking is listed as a possible cause for all cancers. Lung cancer patients do not deserve this disease. I plan to continue to volunteer at events in my area to help raise funds for research and to promote the work and resources available through LUNGevity. And Heather and I look forward to attending National HOPE Summit together this spring.
  6. My Dad was always my Ironman when I was growing up. In 2004, my dad had a persistent cough. He went to the doctor a few times and was finally diagnosed with pneumonia. A year went by and the cough went away for awhile. When it returned, my dad went back to the doctor. He was diagnosed with Stage IV lung cancer. I was 17 at the time. After he was diagnosed, my Dad signed up for Heather Saler’s Lung Cancer Walk in Pennsauken, NJ, which eventually became Breathe Deep South Jersey. My dad didn’t do the full walk, but he was part of the survivor ceremony. I went with him and that was how we found out about LUNGevity and decided to start fundraising. My dad passed away in 2006, less than a year after he was diagnosed, but he taught me so much during that time. I saw how strong he was during his battle. He never gave up and gave it everything he had. My dad was a photographer. When he passed away in February 2006, my girlfriend (who is now my wife) and I put together a show with all of his photos at a local restaurant. People could come just to see the photos or they could buy them to help raise funds for LUNGevity. The second year, people who were impacted by cancer, either themselves or a loved one, donated artwork for the show. My dad was also a runner. He ran several marathons. I ran my first marathon, the New York City Marathon, in 2016. I wanted to strive for something more challenging so I decided to do the Ironman Lake Placid for Team LUNGevity. Lake Placid is the longest running Ironman event in North America and this is 20th Anniversary year, so it will be a great event. It consists of a 2.4 mile swim, a 112 mile bike ride, and a 26.2 mile run. Doing an Ironman is going to be the toughest thing I ever attempt. I wake up at 4:30 or 5:00 a.m. and either swim, bike, or run for about an hour, then go to work, come home, and train again in the evening. I’ll be training for about seven months total. I’ll be posting my Ironman journey throughout my training all year long on Facebook. I’ll also post stories of my Dad and news from LUNGevity. And hopefully when I finish that Ironman, I will be wearing something LUNGevity. If anything is going to inspire me to complete this Ironman, it is my Dad. The least I can do is try to raise money for lung cancer research in his name. Every dollar counts and every life matters. I hope that my fundraising efforts will make a difference in the fight against lung cancer. Maybe it is the dollar that helps find the cure, maybe it helps give someone affected by this disease sometime of motivation or maybe it just makes people more aware of lung cancer.
  7. I first became involved with LUNGevity through National HOPE Summit, a survivorship conference in Washington, D.C. Seeing so many survivors and being able to share our stories and gain knowledge made the experience very special. I’m always impressed by the quality of what I learn and what is shared. The fact that the medical researchers can interact with patients in an intimate setting and participate in the roundtable discussions is very inspiring. Going to HOPE Summit has been a springboard for many other volunteer and advocacy opportunities. At my first conference, I learned about the LifeLine peer-to-peer support program. As a long-term survivor, I wanted to use my story to try to inspire hope in others who were living with lung cancer, so I jumped at the chance to give back as a mentor. Through HOPE Summit, I also got to know Andrea Ferris, LUNGevity’s President, and Katie Brown, LUNGevity’s Vice President of Support & Survivorship. Katie recommended me as a reviewer for the Department of Defense research grant program and I love being part of that. LUNGevity also connected me with Eli Lilly & Co. who produced an Emmy-winning documentary about my family and me. I've attended a congressional luncheon on Capitol Hill with LUNGevity, and a lab tour at Lilly. I was looking for ways to give back in my local community, so a few years ago I started a support group in Fort Myers, Florida. The group provides wonderful camaraderie and community. We meet once a month to share stories and experiences and resources, and we also get together socially once a month. We’re a close-knit group. In 2017, I convinced four members of my lung cancer support group to attend National HOPE Summit with me. We were so inspired that we decided to organize a Breathe Deep event in Fort Myers to raise awareness about the facts of lung cancer. We were able to share our story in local media and even surpassed our fundraising goal. We held the 5K walk and fun run on November 4 to kick off Lung Cancer Awareness Month. Breathe Deep Fort Myers brings attention to lung cancer and the lack of funding and gives us the opportunity to get rid of the stigma. We want to let the people in our area know that you don’t have to smoke to get lung cancer, that two out of three of the people diagnosed are never-smokers or quit many years ago. Being an event coordinator gives me such a feeling of purpose. I’ve been so aimless since I retired from teaching because of my health. Helping others through this event and through the support group is very rewarding. Our number one goal is to provide much needed research funding. We also want to raise money for patient education and support, and help continue to bring top-notch speakers to HOPE Summits. I hope that both the walk and the support group continue to grow and make an impact in the community. LUNGevity is so patient-oriented and offers so much support and information and education that it aligns with my goals. I want to give back to LUNGevity because I feel like they’ve given a lot to all of us. That makes me want to do as much as I can to help support LUNGevity’s mission to improve quality of life and survivorship. Melissa (bottom right) with members of the Fort Myers Lung Cancer Support Group and their families at the 2017 National HOPE Summit.
  8. LaurenH

    Nina Beaty

    I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects. I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer. Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017. When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen. If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently. One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too. The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible. Photo credit: Ben Hider for the CURE Magazine
  9. I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate. An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010. Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer. They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer. My world had been turned upside down. I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine. Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease. This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world. This was literally a life-saving experience for me and continues to be part of my daily communication. Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers. Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could! My husband and I attended HOPE Summit and that experience has changed my life. Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate. The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options. Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit. Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable. Thank you LUNGevity!
  10. Here is the weekly clip report, including two big announcements from LUNGevity: MedCity News “A Snapshot of Personalized Medicine in Practice” https://medcitynews.com/2017/10/snapshot-personalized-medicine-practice/ PR Newswire “Alexander F. Stern Named Chairman of the Board of LUNGevity Foundation” http://www.prnewswire.com/news-releases/alexander-f-stern-named-chairman-of-the-board-of-lungevity-foundation-300533962.html Markets Insider “Marc Swerdlow Named Vice-Chairman and Treasurer of the Board of LUNGevity Foundation” http://markets.businessinsider.com/news/stocks/Marc-Swerdlow-named-Vice-Chairman-and-Treasurer-of-the-Board-of-LUNGevity-Foundation-1003678880 Cure Today “Tagrisso Approved for Frontline Lung Cancer Treatment” http://www.curetoday.com/articles/tagrisso-approved-for-frontline-lung-cancer-treatment Medical News Bulletin “Can Genetic Screening Improve Lung Cancer Prognoses?” https://www.medicalnewsbulletin.com/gene-screening-lung-cancer-prognoses/ Cure Today “Personalized Treatment Needed for Advanced Lung Cancer” http://www.curetoday.com/articles/personalized-treatment-needed-for-advanced-lung-cancer Medical Xpress “A New Class of Drugs Aims to Exploit Cancer Cells’ Weaknesses” https://medicalxpress.com/news/2017-10-class-drugs-aims-exploit-cancer.html PR Newswire “Stand Up To Cancer Awards Moffitt $2.67 Million to Study New Lung Cancer Immunotherapy” http://www.prnewswire.com/news-releases/stand-up-to-cancer-awards-moffitt-267-million-to-study-new-lung-cancer-immunotherapy-300535599.html Los Angeles Times “Curing Cancer Isn’t Always the Goal. Sometimes You Just Want It to Be a Manageable Chronic Disease” http://www.latimes.com/science/healthy-living/la-he-hl-cancer-cure-20171012-story.html Los Angeles Times “With Cancer, It’s Not Necessarily Where It Starts but Hot It Starts” http://www.latimes.com/science/healthy-living/la-he-hl-cancer-genetics-organ-20171012-story.html The Wall Street Journal “Immunotherapy Treatments for Cancer Gain Momentum” https://www.wsj.com/articles/immunotherapy-treatments-for-cancer-gain-momentum-1507825152
  11. We are excited to announce that BridgetO will be a new LCSC Moderator of the Introduce Yourself and NSCLC forums. BridgetO is a survivor from Portland, OR. She joined LCSC in December 2016 after being diagnosed with lung adenocarcinoma, grade 1, stage 1a, with a KRAS mutation. BridgetO is an invaluable member of this community, and we look forward to seeing her shine in her new role as Moderator!
  12. LUNGevity Foundation's Career Development Awards (CDA) for lung cancer research fund critical lung cancer research projects and offer the recipients world-class mentorship by LUNGevity’s prestigious Scientific Advisory Board. “LUNGevity created the CDAs to identify outstanding scientists early in their careers and encourage their continued development in the field of lung cancer research to grow a strong pipeline of dedicated lung cancer researchers,” says 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 work closely with these researchers with the hope of seeing them become the next generation of scientific superstars.” LUNGevity is proud to support the following researchers its 2017 Career Development Awards: Mehmet Altan, MD, The University of Texas MD Anderson Cancer Center, Identification of predictive markers of toxicity to immunotherapy. Dr. Altan will work to develop a way to predict which patients are most likely to develop serious side effects from some types of immunotherapy – these side effects can limit use of the treatments. Once patients can be flagged as high-risk for tissue damage, measures can be taken to limit the tissue damage proactively; patients may then experience better outcomes with their immunotherapy. Valsamo Anagnostou, MD, PhD, Johns Hopkins University, Dynamics of neoantigen landscape during immunotherapy in lung cancer. Dr. Anagnostou will leverage an existing clinical trial to discover why some patients become resistant to immunotherapy and to get a handle on how to help them overcome the resistance. Zofia Piotrowska, MD, Massachusetts General Hospital, Overcoming heterogeneity and resistance in EGFR-mutant NSCLC. Dr. Piotrowska intends to uncover the reason a subset of lung cancer patients develop resistance to their best option for treatment: a third-generation EGFR-blocking tyrosine kinase inhibitor drug. In addition, she will study a new combination of drugs in a clinical trial that may help patients who develop this type of drug resistance. “We have seen a lot of great progress in treating lung cancer, and we still need to better understand how lung cancer develops resistance to drugs, and why some patients experience side effects from treatment,” notes Upal Basu Roy, PhD, MPH, director of LUNGevity’s translational science research program. “Our funding this year’s group of awardees will help make progress in facing these challenges and continue to improve outcomes for lung cancer patients.” Each of these prestigious three-year awards is for $100,000 per year, renewable in the second and third years based on research progress. Awardees serve as non-voting members of LUNGevity’s distinguished Scientific Advisory Board for the terms of their awards. Awardees are mentored by senior lung cancer experts at their own institutions as well as by experts from the Scientific Advisory Board. Under the guidance of LUNGevity’s Scientific Advisory Board, a group of 21 prominent scientists and researchers, LUNGevity ensures that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives for lung cancer survivors. LUNGevity is the only lung cancer organization with 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 the American Lung Association, Bristol-Myers Squibb, Genentech, The Thomas G. Labrecque Foundation, Upstage Lung Cancer, and individual donors. Read the full press release.
  13. LaurenH

    Kara Capasso

    When my dad, Fred Gontarek, was diagnosed with lung cancer, I felt lost. I wasn’t sure where to turn. I searched the internet as most people do to see what support was out there and what was being done to raise funds for research. Sadly, there were not many local organizations or funds being raised for lung cancer. I vowed to try to change that. I found the Breathe Deep Philadelphia Event was coming up in the Fall of 2011 and knew we needed to be there for Dad and with Dad. Team Fred started in April 2011 with the motto “No One Fights Alone” to show my dad how many supporters he had and to give him hope during his battle with lung cancer. Fred fought as hard as he could until he passed away on April 28, 2012. The motto was then changed to “Never Forget” since our memories of him and what he meant to us continues to live on. Team Fred first walked in 2011 with Fred by our side and today we still walk in his memory as he watches over us. I first formed a team for Breathe Deep Philadelphia in 2011 and have continued to volunteer each year after that. This year it is an honor for me to be the event coordinator for Breathe Deep Philadelphia. The Breathe Deep events program provides knowledge and support during a difficult time. These events give friends and loved ones a chance to gather together to not only raise funds but raise awareness and offer their support. The most rewarding part of being a Breathe Deep event coordinator is knowing that I have a part in raising the funds necessary for critical lung cancer research. My dad was a man who would do anything for anyone and I know that if he were here today he would be right by my side helping in any way he could. My focus is keeping his memory alive while hoping to positively change the lives of others. I hope my fundraising efforts will support life-saving research that is necessary so that one day we can live in a world where no one dies from lung cancer. Kara (right) and Team Fred at Breathe Deep Philadelphia Kara and Fred dancing at her wedding
  14. LUNGevity Foundation is proud to announce that Drew Moghanaki, MD, MPH, has joined its distinguished Scientific Advisory Board. Dr. Moghanaki is a highly regarded expert in the field of radiation oncology and leads the Clinical Research program at Hunter Holmes McGuire Veterans Affairs Medical Center in Richmond, Virginia. Dr. Moghanaki has been instrumental in bringing more than $34 million in funding to improve outcomes for lung cancer patients through a phase III lung cancer trial for veterans and a key VA partnership to increase access to lung cancer screening. LUNGevity’s Scientific Advisory Board oversees the Foundation’s scientific strategy and ensures that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives of all people diagnosed with lung cancer. LUNGevity’s awardees are working to improve our ability to detect, diagnose, and treat lung cancer, as well as prevent its recurrence. LUNGevity is the only lung cancer non-profit with a long-term, strategic focus on the early detection of lung cancer. “We are thrilled to have Dr. Moghanaki join LUNGevity’s Scientific Advisory Board,” said Andrea Ferris, president of LUNGevity Foundation. “He brings expertise in radiation oncology as well as a deep knowledge of the VA healthcare system. We are excited to have his unique perspective and expertise to help guide our research program.” Read the full press release here.
  15. LUNGevity Foundation is proud to announce that Drew Moghanaki, MD, MPH, has joined its distinguished Scientific Advisory Board. Dr. Moghanaki is a highly regarded expert in the field of radiation oncology and leads the Clinical Research program at Hunter Holmes McGuire Veterans Affairs Medical Center in Richmond, Virginia. Dr. Moghanaki has been instrumental in bringing more than $34 million in funding to improve outcomes for lung cancer patients through a phase III lung cancer trial for veterans and a key VA partnership to increase access to lung cancer screening. LUNGevity’s Scientific Advisory Board oversees the Foundation’s scientific strategy and ensures that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives of all people diagnosed with lung cancer. LUNGevity’s awardees are working to improve our ability to detect, diagnose, and treat lung cancer, as well as prevent its recurrence. LUNGevity is the only lung cancer non-profit with a long-term, strategic focus on the early detection of lung cancer. “We are thrilled to have Dr. Moghanaki join LUNGevity’s Scientific Advisory Board,” said Andrea Ferris, president of LUNGevity Foundation. “He brings expertise in radiation oncology as well as a deep knowledge of the VA healthcare system. We are excited to have his unique perspective and expertise to help guide our research program.” Read the full press release here.Dr. Drew Moghanaki joins LUNGevity Foundation Scientific Advisory Board
  16. By: Deborah R. Burns “Everybody can be great. Because anybody can serve. You only need a heart full of grace, A soul generated by love.” - Dr. Martin Luther King, Jr. Charlotte Jamison is many things: a Christian, a mother, a teacher, a friend, and a volunteer. Over the past two years, Charlotte has volunteered her time and talents to assist in the efforts of the LUNGevity Foundation’s Annual Breathe Deep DC 5K Walk. Charlotte serves as the backbone and chief fundraiser for Team Open Technology Group: (OTG) United for A Cure. Charlotte and my family have been friends longer than I can remember. She and my husband Leon had a special relationship. I still remember how they would often laugh together, share experiences, and enjoy working together on church projects. After my husband was diagnosed with lung cancer, she was the key person who supported me and walked me through that unforgettable journey. Since my husband’s death in 2011, she continues to be a huge inspiration in my healing. A member of New Canaan Baptist Church in Washington, DC. (Gregory M. Sims, Pastor), Charlotte has engaged the entire congregation in being part of this important cancer-fighting effort. She sets up a beautifully decorated table each year to receive donations and to recruit walkers for the OTG Team. She and her helpers work tirelessly documenting information, promoting the cause, and speaking to individuals about the walk. On the day of the walk she always arrives with a smile and eager to help. She immediately begins handing out goodie bags, gathering our Team and rallying “Team Spirit”. Many of the volunteers from other teams admire her enthusiasm and dedication for the cause. She inspires through example. I can never thank her enough for all that she brings to our Team and fighting this disease that claims thousands of lives each year. Did I mention that she’s 80 years young! God strengthens her to do His work. She often says “As long as the good Lord enables me to work, I’m going to work.” Open Technology Group’s cup runneths over for having Charlotte Jamison serve as a volunteer for OTG: United For A Cure. We are truly blessed by having her.
  17. 50% of the proceeds from this soccer camp in Columbia, MD, will be donated to LUNGevity Foundation! Soccer Camp.pdf
  18. LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Alice T. Shaw, MD, PhD, has joined LUNGevity’s Scientific Advisory Board, a group of 20 world-renowned scientists and researchers that guides LUNGevity’s research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific strategy and ensuring that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives of lung cancer survivors. LUNGevity is the only lung cancer organization with a programmatic focus on early detection and Career Development Awards. Our researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The research program is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. Dr. Shaw is the Director of the Center for Thoracic Cancers and the Paula O’Keeffe Endowed Chair of Thoracic Oncology at Massachusetts General Hospital. She is also an Associate Professor of Medicine at Harvard Medical School. In addition to caring for patients with lung cancer, Dr. Shaw performs clinical and translational research. Her clinical research focuses on subsets of NSCLC that have unique driver mutations, such as EGFR, ALK, and ROS1. Her translational research focuses on understanding and making clear the mechanisms of resistance to targeted therapies; she is currently developing novel combination treatment strategies. Her research has helped to develop numerous FDA-approved targeted therapies for patients with oncogene-driven NSCLC, such as crizotinib (Xalkori®) for patients with ALK or ROS1 rearrangements. “We could not be happier that Dr. Shaw has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “She is a brilliant thinker, an innovator, and a compassionate advocate for her patients. In particular, her groundbreaking work that led to the development of Xalkori® has extended and improved the lives of many NSCLC patients. Her expertise and counsel will advance LUNGevity’s goal to increase and improve survivorship for those affected by lung cancer.” Read the full press release here.
  19. We have several possible media opportunities for individuals who are using the Lung Cancer Navigator App to help manage their/their loved one's lung cancer diagnosis. If you are interested in sharing your story and helping to raise awareness for this resource, please respond to this thread and we will be in touch with more information. If you would like to learn more about the Lung Cancer Navigator App and how to download it for free from the Apple or Google Play stores, please visit LUNGevity's website. Thank you! Lauren -- Digital Community Manager LUNGevity Foundation
  20. LUNGevity Foundation has launched Patient FoRCe, the first-ever critical bridge to connect the voices of lung cancer patients — a significant population — with health care professionals, regulators, policymakers, and developers of drugs. “Lung cancer is the #1 cancer killer, taking the lives of 157,000 Americans every year. LUNGevity is leading the way in changing the paradigm of cancer treatment ─ from assuming patient wishes to evidence-based conclusions about what patients value,” said LUNGevity Chairman Andrea Stern Ferris. “Through Patient FoRCe, lung cancer patient voices will be heard and heeded as policy is developed, research is conducted, and treatment decisions are made.” Patient FoRCe, LUNGevity’s Patient-Focused Research Center, will undertake never-before studies of those living with lung cancer, collecting and sharing robust qualitative and quantitative data about lung cancer patients’ preferences and experiences to inform treatment, as well as relevant policy and research protocols. Patient FoRCe’s immediate focus will include continuing a study of patient preferences and experiences regarding access to care, treatment and diagnostic options, and the impact of symptoms on daily living, as well as conducting studies to facilitate patients’ access to biomarker testing, which is essential to implementing precision medicine. Patient FoRCe will also initiate a study into increasing adherence to lung cancer screening protocols for people at high risk for lung cancer. Additional projects will be based on stakeholder input and the guidance of an external advisory board of survivors, academic and community clinicians, industry partners, patient advocacy groups, and community partners. LUNGevity formally announced Patient FoRCe at the American Association for Cancer Research’s 2017 Annual Meeting in Washington, DC, on Sunday, April 2. Andrea Stern Ferris spoke to the urgency of the initiative, saying, “For too long, public policy, the practice of medicine, and drug development have not adequately integrated the viewpoint of patients. LUNGevity is determined to change that paradigm. By incorporating the patient’s voice into every step of the process – in policymaking, in trials, in treatments – we will improve outcomes for those diagnosed with lung cancer.” “Our goal is to uncover gaps in information, misperceptions about patient attitudes, and areas of unmet patient need,” explained Dr. Upal Basu Roy, Director of Patient FoRCe. “LUNGevity is the only organization driving this type of change for the lung cancer community, and we anticipate that our findings will shape the future of lung cancer care.” For more information about Patient FoRCe, visit www.LUNGevity.org/patientforce. Click here to read the full press release.
  21. We all know that when someone receives a lung cancer diagnosis, it can be overwhelming. LUNGevity designed the Lung Cancer Navigator app is to empower patients and make understanding and living with lung cancer less daunting and considerably more manageable. The Lung Cancer Navigator mobile app puts your entire support network in the palm of your hand. It helps you understand your diagnosis and provides tools and forums for asking questions, detailing symptoms, and managing medications. The app is a great way to communicate with your healthcare providers and to request support from friends and family. Follow these easy steps to get started! WATCH the introductory video for a quick demonstration of how the Lung Cancer Navigator works. DOWNLOAD the free LUNGevity Lung Cancer Navigator from Google Play or the Apple App Store. VIEW these step-by-step instructions to set up your app. TELL US what you think! We’re eager to know what you find most beneficial and how we can make the Lung Cancer Navigator even more helpful in the future.
  22. Cancer advocate to address largest lung cancer survivor conference FOR IMMEDIATE RELEASE Media Contact: Linda Wenger lwenger@LUNGevity.org (973) 449-3214 Country music star and cancer survivor Wade Hayes WASHINGTON, DC (February 16, 2017) – LUNGevity Foundation is excited to announce that country music star Wade Hayes will be sharing his cancer journey with lung cancer survivors and their caregivers at the 7th Annual National HOPE Summit on April 29 in Washington, DC. As opening keynote speaker, he will relate his experiences before the largest convening of lung cancer survivors in the country. The annual LUNGevity National HOPE Summit is the largest lung cancer survivorship conference where attendees come from across the country and around the world to learn about living well with lung cancer. The three-day event features inspirational speakers, medical expert forums, lung cancer survivor-specific sessions, advocacy sessions and opportunities for lung cancer survivors at all points in their treatment to connect with each other. Hayes will kick off the two-day conference and set the tone of hope for all in attendance. Hayes was diagnosed with stage IV colon cancer in the fall of 2011. After extensive surgery and debilitating chemotherapy, Hayes battled his way back to health only to have the cancer return in the fall of 2012. The country singer fought back and channeled his experience into his latest album, “Go Live Your Life.” Today, Hayes is cancer free, a dedicated advocate for people living with cancer, and an active supporter of the Colon Cancer Alliance and other cancer nonprofits. He has spoken and performed at numerous events across the country to raise funds to fight cancer and inspire others. “We couldn’t be more thrilled to have Wade Hayes join us for this one-of-a-kind celebration of lung cancer survivorship,” said Katie Brown, VP Support and Survivorship. “His commitment to advocating on behalf of others with cancer makes Wade an inspiration for all of us.” The National HOPE Summit is a 2½ day conference in Washington, DC, that is open to lung cancer patients, survivors, and caregivers. Learn more about this unique event and register atwww.LUNGevity.org/hopesummit. Read the full press release here.
  23. Hello there …. my name is Alisa Brenes and I am a 16-year Stage 3 lung cancer survivor. I guess you can say my lung cancer journey started before I was born. My mom, my maternal grandfather and many of his siblings all died of lung cancer. I am motivated to do my part to end our family history now. I have been a lung cancer advocate for over ten years, most of my work behind the scenes, but little by little I’m coming out and sharing my story. I hope to follow this introduction with more blogs, sharing hope and spreading awareness. I was diagnosed in July of 2000, just a few months after my mom passed away from lung cancer. It still boggles my mind that I was taking care of my mother while the same cancer was growing inside my lung. I had a third of my lung removed and followed up with chemotherapy. I am a single mother of twin boys who were 10 years old at the time. They were in fourth grade and I didn’t even know if I would be there for their elementary school graduation. Thanks to God and my amazing doctors, I lived to see my twins graduate from college. My next goal is to see them happily employed I was diagnosed before social media and message boards were around, the world wide web was fairly new and there wasn’t even google yet. I felt lost and had never met another lung cancer survivor. Within a few months the internet started becoming more popular and all that changed. Somehow (thank you Universe!) I found Katie Brown’s original message board and through that I not only connected with other Survivors, but I was introduced to the first Walk for a Cure (now called Breathe Deep NYC) and have been volunteering ever since. And if that wasn’t enough to keep me hopeful and connected (and it was …) I was introduced by Katie and LUNGevity to Hope Summit! If anyone wants to know what it is like to be in a room with hundreds of survivors (but no one ever gets lost in the crowd, somehow we end up like one big family) just come to Hope Summit. The energy is amazing and you leave the Summit with life-changing knowledge, friendships and Hope. This is not a journey I chose or one that I would wish on others, but the truth is I've grown so much through this and have such an appreciation of every day and the friends I now call family that I've met through lung cancer have enriched my life beyond words! As strange as it might sound to some, I can actually say that my cancer diagnosis brought me many blessings. It is my desire to share hope and friendship with other survivors and help spread awareness so one day we will live in a world where no one dies of lung cancer.
  24. LUNGevity Foundation Issues Request for Applications for 2017 Career Development Awards for Translational Research in Lung Cancer Application now available online FOR IMMEDIATE RELEASE Media Contact: Austin Courtney acourtney@susandavis.com (202) 414-0791 Washington, D.C. (January 17, 2017) — LUNGevity has issued a Request for Applications (RFA) for translational research for Career Development Awards that will be granted in 2017. The RFA is available on the LUNGevity website at www.LUNGevity.org/career-development-awards and is also posted on the proposalCENTRAL website at https://proposalcentral.altum.com. LUNGevity’s Career Development Awards for Translational Research program was created to support future research leaders who will keep the field of lung cancer research vibrant with new ideas. Successful applicants may receive $100,000 per year for a possible period of three years and will participate as non-voting members of LUNGevity’s Scientific Advisory Board for the duration of the award. Applicants must be within the first five years of their faculty appointment. The Career Development Awards are mentored awards, and a mentoring plan is part of the required submission. Projects that will be funded in 2017 are expected to have a direct impact on the early detection of lung cancer or on the outcomes of lung cancer, or to provide a clear conceptual or experimental foundation for the future development of methods for early detection and/or individualized treatment, including through targeted therapy and immunotherapy. Letters of intent must be submitted by Friday, February 20, 2017. LUNGevity supports the largest research awards program of any lung cancer-focused organization in the United States. Since 2002, LUNGevity has funded 118 projects at 58 institutions in 23 states. About Lung Cancer in the U.S. About 1 in 15 Americans will be diagnosed with lung cancer in their lifetime More than 224,000 people in the U.S. will be diagnosed with lung cancer this year About 60%-65% of all new lung cancer diagnoses are among people who have never smoked or are former smokers Lung cancer takes more lives than the next four deadliest cancers (colorectal, pancreatic, breast, and prostate) combined Only 18% of all people diagnosed with lung cancer will survive 5 years or more, BUT if it’s caught before it spreads, the chance for 5-year survival improves dramatically About LUNGevity Foundation LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org. Click here to read the full press release online.
  25. Edward Garon, MD, of UCLA joins the LUNGevity Foundation Scientific Advisory Board Dr. Garon brings expertise in clinical trials and other key areas to LUNGevity’s research program FOR IMMEDIATE RELEASE Media Contact: Austin Courtney acourtney@susandavis.com (202) 414-0791 WASHINGTON, DC (January 13, 2017) – LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Edward Garon, MD, has joined LUNGevity’s Scientific Advisory Board, a group of 19 world-renowned scientists and researchers who guide LUNGevity’s scientific strategy and research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific approach and ensuring that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives for lung cancer survivors. LUNGevity is the only lung cancer organization with programmatic focuses on early detection and Career Development Awards. LUNGevity-funded researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The research program is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. Dr. Garon is the Director of the Thoracic Oncology Program at the Jonsson Comprehensive Cancer Center at UCLA and Associate Professor of Medicine in the Division of Hematology-Oncology at David Geffen School of Medicine at UCLA. He has been the principal investigator of peer-reviewed grants from various funding organizations, including the National Cancer Institute. His focus is on clinical research and biomarker development. He has served as the principal investigator on national and international phase I, II, and III clinical trials. Among these are trials that have led to the approval of drugs for the treatment of non-small cell lung cancer, including ramucirumab (Cyramza®) and the immunotherapy pembrolizumab (Keytruda®). “We are honored that Dr. Garon has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “His expertise and advice will be invaluable to furthering LUNGevity’s goal to improve outcomes for lung cancer patients.” Click here to read the complete press release on LUNGevity.org.
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