Search the Community
Showing results for tags 'lung cancer'.
-
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.
-
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.
- 1 comment
-
- 2
-
-
- lung cancer
- family history
- (and 5 more)
-
Back in 2009, my mother-in-law, Sue Fosco, was diagnosed with lung cancer. It came as a huge shock to our family. Sue was a very healthy oncology nurse and non-smoker. At first, she thought she had a cold or sinus infection, but it wouldn’t go away, so she went in for further testing. The people administering the tests were her colleagues and friends at the Edward Cancer Center in Naperville. Sue was diagnosed with Stage IV bronchoalveolar adenocarcinoma in both lungs. Sue was a wonderful wife, mother, grandmother, daughter, friend, and nurse. When she passed away in 2011, my husband Dominic and I were in a fog. The day she passed, LUNGevity found us through an email from the Carlinsky family. Dominic worked with Mark Carlinsky, whose wife Lisa passed away from lung cancer in 2008. Lisa had been Sue’s patient at Edward Cancer Center. It seemed like there were a lot of connections drawing us to LUNGevity. We looked into LUNGevity and realized it was a great organization, so we set up a page for family and friends who wanted to donate money toward lung cancer research. In November, we decided to walk in Breathe Deep DuPage to help keep her memory alive. We started a team in Sue’s memory, named “Steps for Sue.” Our team has been walking ever since. In 2013, the event coordinator Michelle Bowles was looking for someone to be a co-chair for Breathe Deep DuPage. Mark recommended me and Michelle sent me an email. As I read the email, I thought, this is my next calling. Michelle and I co-chaired the event in 2013 and 2014. In 2015, Michelle was ready to take a step down, so I became the coordinator. Sue’s loss has inspired me to become involved with LUNGevity Foundation and to raise awareness to fight the stigma surrounding lung cancer. I want the question “Was she a smoker?” to disappear. No one deserves to get lung cancer. I want people to know that lung cancer isn’t just a smoker’s disease. Anyone with lungs can get lung cancer. The most rewarding part of being a volunteer event coordinator is seeing people come to the walk every year. We have had many teams walking for many years and for other teams, it’s their first year. I want the event to be meaningful and impactful for each team that walks. It’s so important for people to come and see survivors and for people to celebrate the memory of the person they’ve lost. Seeing more survivors at the walks each year shows us that what we are doing is making a difference. I’m happy that more people are living longer with lung cancer because of early detection and targeted therapies and the work LUNGevity is doing. Sue Fosco with her granddaughters Melissa with her family
-
LUNGevity Announces Funding Opportunity for First-Ever Lung Cancer Early Detection and Interception Dream Team Call for ideas for SU2C-LUNGevity-American Lung Association collaboration FOR IMMEDIATE RELEASE Media Contact: Linda Wenger lwenger@lungevity.org (973) 449-3214 WASHINGTON, DC (February 6, 2017) – Building on the Foundation’s more than seven years of strategic investment in early detection research, LUNGevity Foundation, in collaboration with Stand Up To Cancer (SU2C) and the American Lung Association (through its LUNG FORCE initiative), is pleased to announce that the American Association for Cancer Research (AACR), SU2C’s scientific partner, has issued a Call for Ideas for research proposals that focus on lung cancer early detection and interception: catching precancerous cells and blocking them from turning into cancer cells. The interdisciplinary and multi-institutional SU2C-LUNGevity-American Lung Association Lung Cancer Interception Dream Team will be the first of its kind, with up to $7 million in funding support. As Dr. Pierre Massion, Professor of Medicine and Cancer Biology at Vanderbilt University, points out, "We understand the pathogenesis of lung cancer a lot better now. People have come to recognize that detecting the disease early and preventing it will require efforts between multiple disciplines to get there. The Lung Cancer Interception Dream Team is a huge step toward this goal." Dr. Massion is a member of LUNGevity’s distinguished Scientific Advisory Board and co-chairs the SU2C-LUNGevity-American Lung Association Joint Scientific Advisory Committee (JSAC). LUNGevity is the only lung cancer nonprofit with a programmatic focus on early detection, to find lung cancer when it is most treatable. Currently, only 15% of people with lung cancer are diagnosed in the earliest stages, resulting in a 5-year survival rate of only 17.7%. This project expands on LUNGevity’s investment in early detection research with the goal of developing an effective, widely available, noninvasive way of finding lung cancer early in all populations. Prioritized areas of interest for this project include research that accurately categorizes premalignant conditions according to risk of progression and that elucidates the underlying alterations that increase that risk; identification of new targets for developing therapeutic interventions of these early lesions; potential surrogate endpoints for clinical trials and regulatory approval; new tools for early detection and monitoring progression; the role of inflammation and immunosuppression in progression; or research targeted at generating sufficient knowledge to justify a clinical intervention to test novel hypotheses. Applicants for the grants are expected to show how their proposed projects will have positive benefit for patients in the near future, achieved through investigation by a multidisciplinary, multi-institutional, synergistic Dream Team of expert investigators. Priority will be given to applications that are characterized by a diversity of team members, including those from fields outside the traditional realms of biomedical research (e.g., physics, mathematics, engineering, health policy, and communications). Specific aims of the project may include basic research, translational studies, and population studies, but the overall proposal must have a strong clinical research component. Program details can be found at https://proposalcentral.altum.com. Letters of Intent are due by March 8, 2017. Read the full press release on LUNGevity's website.
-
LUNGevity Foundation Partners With CancerCare to Launch Lung Cancer HELPLine Free Service Addresses Emotional, Practical, and Information Needs of Lung Cancer Patients FOR IMMEDIATE RELEASE Media Contact: Amanda Greenfield amanda.greenfield@kingcompr.com 212-561-7430 WASHINGTON, DC (January 19, 2017) – LUNGevity, the nation’s leading lung cancer-focused nonprofit organization, today announced the launch of the LUNGevity Lung Cancer HELPLine, a free phone service through which a team of professional oncology social workers will be available to address the emotional, practical, and information needs of people diagnosed with lung cancer, their families, and caregivers. This year, more than 240,000 people in the U.S. will be diagnosed with lung cancer, which means that hundreds of thousands of lung cancer patients, family members, and caregivers will be responsible for navigating a disease that is likely unfamiliar to them. The LUNGevity Lung Cancer HELPLine will serve as a vital resource and source of support for all affected by the disease. LUNGevity has partnered with CancerCare®, the leading national organization providing free, professional support services and information to help people manage the emotional, practical, and financial challenges of cancer. CancerCare’s team of professional oncology social workers are uniquely qualified to address these needs. For nearly 73 years, CancerCare has provided free support services to cancer patients aimed at alleviating distress, helping them to obtain the best possible outcomes from their treatment. Those seeking assistance can call LUNGevity’s new toll-free HELPLine, 844-360-LUNG (5864), from 9:00am – 5:00pm ET, Monday through Friday to: Receive immediate access to reliable educational resources and programs Get personalized information about lung cancer and treatment options Learn effective ways to cope with cancer including managing emotions such as depression, anxiety, or sadness Improve communication with their health care team and loved ones Get referrals to financial assistance resources for needs including pain medication, homecare, childcare, medical supplies, transportation for treatment, and copayment assistance related to chemotherapy and targeted treatment therapies. (Provided to those who meet CancerCare’s eligibility guidelines; subject to funding availability.) Depression, anxiety, strains on relationships, loss of motivation, and financial burdens are commonly experienced by lung cancer patients and can compromise a patient’s ability to complete treatment. LUNGevity developed the Lung Cancer HELPLine to help patients, their caregivers, and families combat these symptoms by offering direct and personalized support for callers across the nation. “Providing lung cancer patients, their families, and caregivers with the resources and tools they need to address every phase of this disease is a priority,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “Our goal in setting up this HELPLine is to add dimension to these efforts and provide an additional resource to individuals affected by lung cancer to ensure that no one has to navigate this disease alone.” The HELPLine will join a number of other critical resources LUNGevity has created to support the needs of lung cancer patients, their caregivers, and loved ones, including Clinical Trial Finder, LifeLine Support Partners, and the recently launched Lung Cancer Navigator Mobile App. Charitable funding for the HELPLine was generously provided by Bristol-Myers Squibb Company and Genentech. For more information on LUNGevity, please visit www.LUNGevity.org. Click here to read the full press release.
-
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.
-
LUNGEVITY FOUNDATION INTRODUCES A NEW MOBILE APP TO HELP PATIENTS UNDERSTAND AND MANAGE LIFE WITH LUNG CANCER Lung Cancer Navigator is a Customized Communication Hub that Puts Education, Care Management and Personal Support in the Palm of Your Hand PR Newswire, WASHINGTON, DC (January 11, 2017) Click here to view the multimedia press release. LUNGevity, the nation’s leading lung cancer-focused nonprofit organization today launched a new mobile application designed to make understanding and living with lung cancer less daunting and considerably more manageable. The new Lung Cancer Navigator mobile app provides lung cancer patients with access to the latest medical and treatment information related to their specific lung cancer diagnosis, and serves as a convenient hub for organizing customized care and support networks, asking questions, describing and tracking symptoms, and managing multiple medications. Lung cancer is the second most commonly diagnosed cancer worldwide, with more than 1.8 million new cases diagnosed each year. The LUNGevity Lung Cancer Navigator app provides tools and forums to help those coping with the disease (including caregivers and support network members) communicate important details in real time, while handling care management needs with efficiency, medical guidance and less stress. “When someone receives a lung cancer diagnosis, it can be overwhelming,” said Andrea Ferris, President of LUNGevity Foundation. “Our goal with the LUNGevity Lung Cancer Navigator app is to empower patients and provide them with a forum for connecting to customized information and a support community that helps them navigate life with understanding and much less fear.” While lung cancer can affect anyone regardless of gender or ethnicity, only 18% of people diagnosed with the disease survive five years or more. LUNGevity Foundation strives to change outcomes for people living with lung cancer through research, education, support and advocacy. Through the LUNGevity Lung Cancer Navigator app, LUNGevity Foundation aims to provide patients and caregivers with a greater sense of empowerment, understanding and improved management of personal diagnostic, treatment and appointment information. The LUNGevity Lung Cancer Navigator was developed through an educational grant from Bristol-Myers Squibb. LUNGevity’s Lung Cancer Navigator Mobile App is available as a free download on iOS and Android devices. For more information and to view a demonstration video, visit https://www.lungevity.org/. About Lung Cancer: 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% of all new lung cancer diagnoses are among people who have never smoked or are former smokers Lung cancer kills more people than the next three cancers (colorectal, breast, and pancreatic) combined Only 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. ### Press Contact: Cynthia Inácio 212-561-7476 cynthia.inacio@kingcompr.com
-
Good afternoon, LCSC members! Every Friday, I will start sharing a weekly clip report in this forum. I encourage you to reply to each thread to let us know what kind of news stories are most interesting/relevant to you. I'll post the first weekly clip report this Friday, December 16! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
-
- 1
-
-
- lung cancer
- news
- (and 3 more)
-
I had never experienced anyone personally having cancer until my mom. To watch her rapid change in a year was very shocking for us all. Although, her cancer did go into remission, the damage from the chemo had done a toll on her body. I would share encouraging words to my mom during the process. "You are stronger than you know strength to be." She would smile and say "Thank you." Out of the whole family, I was the most calm throughout this experience. And I often wondered why? I know now that is was the faith that I stood on and I knew that one day she would be pain free. Her last few words to me was to keep going. I was there with my mom in her last conscious moments before the dilaudid was given and that's something I will never forget. She went right to sleep.. When my mom transitioned, I spoke at her memorial service and I encouraged everyone there to smile knowing that there's a new cheerleader on your side! I want to encourage everyone with that. Anyone who has loss a loved one...you have a new cheerleader/fan on your side. Constantly cheering you on. We cannot see them physically, but we can sure feel them energetically! Encourage someone today! http://tiny.cc/sharemylove
- 2 replies
-
- 1
-
-
- survivor
- cancer awareness
- (and 4 more)
-
After losing my mother to lung cancer in 2010, I had been looking for ways to help raise awareness for the disease and educate people that lung cancer is not just a “smoker’s disease.” My mother's efforts at raising awareness were very important to her and I wanted to honor her life and efforts by continuing that community outreach. After participating in Breathe Deep Nashville in 2012, I indicated in a post-race survey that I would be interested in helping out the following year. One of the coordinators reached out to me and asked if I would be willing to join the planning committee and I’ve been involved ever since. This past November was my 4th Breathe Deep Nashville to help plan. We usually start working on our November event in March or April, so there is obviously a lot that goes into putting together an event like this. The reward for me after all that is honoring the same group of survivors year after year knowing that we are helping to fund a Foundation that supports them in ways no other lung cancer focused organization does. We are lengthening lives through early detection and focused therapies. We are providing survivors and their caregivers with the support and resources they need. We are making a difference. We are very fortunate in Nashville to have an amazing group of doctors at the Vanderbilt-Ingram Cancer Center working on research and treatments to help end this disease. I choose to continue volunteering my time for the LUNGevity Foundation because some of the funds we raise come directly back to Nashville. Dr. Jonathan Lehman was a recipient of the LUNGevity Career Development Award in 2016. Through that grant I can see our fundraising efforts impacting his amazing research. I hope our fundraising efforts will help us to realize a world where no one dies from lung cancer: a world where no one has to lose their mother too early like I did. Ryan is pictured sixth from the left. The theme of Breathe Deep Nashville is "Stache and Lash" so participants grow or wear fake mustaches and false eyelashes to add creativity and laughter to event day!
-
- 1
-
-
- lung cancer
- breathe deep
- (and 4 more)
-
The LUNGevity Support and Survivorship Program Supporting Lung Cancer Awareness Month Written by: David Morales November is both Lung Cancer awareness and National Family Caregivers Awareness month. In helping the fight, family and friends often take on the caregiver role to offer support. College News advocates the awareness for the cause this November. Katie Brown, the VP of the LUNGevity Support and Survivorship Program, joins College News with special guest Anita Logsdon, a nurse in oncology hematology care (OHC), to discuss the challenges of caregivers for people fighting lung cancer. College News: How common is lung cancer? Katie Brown: Lung cancer is very common. It affects one in 15 people. In the United States, it is the leading cause of death among men and women. There are more than 224,000 new cases diagnosed every year. CN: What is the role of a caregiver for a person diagnosed with lung cancer? KB: Caregivers are unsung heroes that take on many different roles and responsibilities. They may offer emotional, practical or physical support for a loved one or they may help at doctor appointments, during treatments and with household responsibilities. It really varies for each individual. CN: What types of support and resources are available to help caregivers navigate in their role? KB: Well, at LUNGevity we have a lot of lung cancer patients and caregivers. We have a comprehensive website that is scientifically and medically vetted. You can visit lungevity.org. There is also navigatelungcancer.org. That is a great new resource for caregivers. It was developed by Bristol Myers Squibb in partnership with lung cancer patient advocacy groups just like ours. It’s a comprehensive source of education and information for people living with lung cancer, their caregivers, loved ones and also Oncology nurses like Anita! CN: Hello Anita! What role can a caregiver play to help a patient navigate their medical care? Anita Logsdon: The caregiver can do some research before the initial visit so they can have knowledge of the appropriate questions to ask the doctor, such as: what type of lung cancer, what is the stage of the cancer and what type of treatment options are available? Especially, what the side effects of chemotherapy, immunotherapy or surgery are, or if there are any available clinical trials. Clinicaltrials.gov is a website that has information on clinical trials across the country. Clinical trials are an option now for treatment! There are many new therapies that have come out in the past few years for lung cancer. CN: What are some helpful tips to give caregivers when they visit a doctor? AL: Where I work, we have a multidisciplinary team. The patients and their family will meet first with the physician. After that initial consult, they will meet with an advanced practice provider, a nurse navigator and a financial navigator. This meeting helps to identify the needs the patient and their support team may have early on in their journey. CN: Katie, are the results of this new survey transparent throughout your organization? Katie Brown: I believe so! It’s clear that caregivers want more information. They want education and support. We find that, adequately supported, their better able to care for their loved ones. It improves the quality of life for the lung cancer patient and the caregiver. - See more at: http://www.collegenews.com/article/the-lungevity-support-and-survivorship-program-supporting-lung-cancer-aware#sthash.yrKQfHb1.dpuf This interview was originally published on collegenews.com on November 29, 2016. Link: http://www.collegenews.com/article/the-lungevity-support-and-survivorship-program-supporting-lung-cancer-aware
-
Nothing can prepare a man and his family for a lung cancer diagnosis. I remember the night five years ago when my mom called me with bad news. My uncle, Keith, had just been diagnosed with Stage IV lung cancer. Keith is my dad’s youngest brother, who is always making everyone laugh and giving the best bear hugs. He is a husband, father, and small business owner who coached all of his kids’ youth sports teams and never missed a game. My grandfather passed away from paranasal sinus cancer when Keith was seven, so he grew up without really knowing his dad. Because of that experience, Keith is determined to never leave an empty seat at an important family event. The night we found out that our beloved uncle had lung cancer, my sister and I cried together and hugged each other for a long time. We started asking questions like, “How did this happen?” and “Why him?” and “What does this mean?” Then we realized there was only one question we could actually attempt to answer: “What do we do about it?” My mom was at our local farmer’s market when by chance, she met Cindy, the founder of Breathe Deep Baltimore, one of LUNGevity’s grassroots events. Cindy started the Breathe Deep Baltimore walk in 2008 in loving memory of her mom. The event was taking place in Oriole Park at Camden Yards. Monica Barlow, the Orioles’ former PR Director who had the same ALK-positive lung cancer as my uncle, was the keynote speaker. We had to be there. Our first Breathe Deep walk as a family was hopeful and somber as we celebrated survivors and honored those we’ve lost to this terrible disease. Monica spoke about the groundbreaking research that LUNGevity was funding and how important it is to be strong advocates. That was the first time that my uncle met other lung cancer survivors. Until that day, he didn’t have anyone to talk to who understood what he was going through. Breathe Deep Baltimore felt like my family was part of an important movement, and that we were accomplishing something together that was much bigger than what any one of us could have done alone. I had just finished grad school and all of my work and volunteer experience was in marketing and event management, including positions with Susan G. Komen and American Cancer Society. I decided to join the Breathe Deep Baltimore committee and help plan future events. I had no idea then that this group of wonderful people would become like family to me. This September marked my uncle’s fifth year as a survivor, a milestone we celebrated as a family. His first year of treatment included chemotherapy, radiation, and surgeries. He took Xalkori, a targeted therapy drug, for three and a half years and recently switched to Alectinib, both with very positive results. This September also marked my fifth year on the Breathe Deep Baltimore committee and my second year as a LUNGevity employee. Working for LUNGevity, first as a volunteer and now as a full-time staff member, is incredibly rewarding. As the Digital Community Manager, I interact all day on social media and our online communities with patients, survivors, caregivers, and advocates. I am incredibly thankful for the people who are working to create a world where people with lung cancer live longer and better because of early detection and more effective treatments. I am grateful for the opportunity to know and work with these people and to help support others whose lives have been affected by lung cancer. By working together, I am determined and optimistic that we can stop lung cancer. There are always an infinite number of reasons to be hopeful.
-
Hi my name is Terry Gillespie. I am a 13-year lung cancer survivor. I started my lung-cancer journey back in October 2003. In the fall, I am prone to sinus infections, so as usual I got one. It just so happened this time that I let it go a little longer because I had just lost my job and had no insurance. When it got so bad and I coughed so hard that I had a little blood in my sputum, I called the doctor and made an appointment. My doctor prescribed the usual antibiotics, and when I mentioned that this sinus infection was worse than normal, and that I must have hurt my throat coughing because I saw a little amount of blood. She said that she was concerned that I may have pneumonia or TB, so decided to run tests. That was when my world turned upside down. At that time, there was very little information about lung cancer treatments and very grim survival rates. I had very little support. After my biopsy, it was confirmed that it was cancer. I told the doctors that I did not want to know what they thought my end date would be. I was going to die at the ripe old age of 80, in my sleep. So on we went with the treatment with no mention of a termination date. I had my left lung removed, and then I had radiation and chemotherapy. I was bald and beautiful. I also had some pretty bad side effects. During surgery, my surgeon accidentally hit my right vocal chord and I was without a voice for two years. Let me tell you, I can now hit my target directly when I throw things to get attention! I have permanent sciatica on my left side. I am one of the lucky lung cancer survivors and I have not had a recurrence. People tell me that I look great for having lung cancer. It makes me wonder . . . What do people think that cancer survivors look like? The reality is that many lung cancer patients are not so lucky. I chose to be an advocate for lung cancer awareness as soon as I physically and mentally was able. I decided that I can help make a difference. My motto was “Nobody Deserves to Die from Lung Cancer.” I still believe that today. We have to do whatever we can to raise awareness, to educate people that this is NOT only a smoker’s disease, and to raise money for research to help eliminate lung cancer. (Terry, right, pictured with fellow survivor and friend Tommieanne Bolden, at National HOPE Summit)
- 1 comment
-
- 1
-
-
- lung cancer
- advocate
- (and 2 more)
-
I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends. I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver. In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try. At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years. During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing. That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested. In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen. I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung. This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront. In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible. After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure. I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing. So I know if I post my treatment plans I will hear from someone if I am off track. I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority. I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available. Since my girlfriend Penny Blume passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients. My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA. I was able to connect with Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease. When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live. It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest. Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family. My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you. Be well, Don Stranathan Stage 4 Lung Cancer Survivor
-
- 1
-
-
- lung cancer
- nsclc
- (and 6 more)
-
Are you a lung cancer survivor? Please participate in this 5-10 minute anonymous survey, and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community. https://www.surveymonkey.com/r/R25QHD7
-
Are you a lung cancer caregiver? Please participate in this 5-10 minute anonymous survey and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community. https://www.surveymonkey.com/r/R23F5XN
-
Triage Cancer and The Samfund have created an online resource called Finances 101: A Toolkit for Young Adults with Cancer. The toolkit guides young adults to the information they need to make important financial decisions in the wake of a cancer diagnosis. This collaboration between Triage Cancer and The Samfund aims to mitigate the financial toxicity we see in our community. Whether at the time of diagnosis, in the midst of treatment, or at any point in recovery, we hope to help young adult survivors find information that is most relevant to them. As you may know, open enrollment for the ACA State Health Insurance Marketplaces began yesterday. We know that healthcare is crucial for young adult survivors and so wanted the first module of the Toolkit to focus on health insurance. Premiums are on the rise and we want our young adults to be able to make the best possible decision when choosing an insurance plan. To access the toolkit, visit www.CancerFinances.org
-
I first got involved with LUNGevity in early 2013. My husband had been recently diagnosed with lung cancer and I was looking to participate in a walk to raise the much needed funds for research. I chose to work with LUNGevity because I saw that they had many walk/runs throughout the country. Prior to my husband's diagnosis I didn't know much about lung cancer and like most people believed it was unlikely to ever touch my life as we both have never smoked. After his diagnosis I learned that it's the deadliest of all cancers yet the least funded. And LUNGevity is one of the very few that focuses on lung cancer specifically. I contacted LUNGevity asking if they had a walk in my area - Albany, NY. I first spoke with Diana Aldecoa, the Vice President of Breathe Deep Events, and she indicated that the closest was Syracuse and asked if I was interested in starting one. I organized the first Breathe Deep Albany that year. I believe Breathe Deep Albany has been growing steadily in terms of participation and money raised over the last four years. It's been a welcome and much needed event in our community to support those bravely dealing with this disease. It's been a way for survivors to support each other and spread the word about lung cancer. It's a place for those who have lost someone to remember them and raise money in their memory to help those living with the disease and hopefully to find a cure so others don't have to go through what their loved one had to endure. I know Breathe Deep Albany is very much appreciated and supported by NYOH (New York Oncology Hematology). My husband's oncologist has been a lung cancer specialist for many years in this area and has said that this event has been needed in the community. I'm proud that we've built this event up year by year. The first year we raised $15,000, second year $22,000, third year $25,000 and this past year nearly $43,000. That's over $100,000 raised in our little community. I'm always very proud on event day when everything comes together. The program we hold before the walk is inspiring. We hear from brave survivors who are willing to tell their stories and the remarkable doctors in the area telling us all the new developments on the horizon. I hope our fundraising efforts raise enough money to find a cure or at least the next line of defense in terms of meds. I'd also like to see a test developed to detect lung cancer earlier for everyone so that it becomes routine like mammograms.
-
- 1
-
-
- lung cancer
- lungevity
- (and 6 more)
-
Your bone metastasis story can make a difference! If you or a loved one has bone metastasis, sharing your experience can help others. Learn more about the Voices of Experience volunteer network by calling 1-855-894-4352 or info@voicesofexperience.net
-
I am new to this site hope I am doing this right. I am a lung cancer survivor. Never smoked. Due to the efforts of my doctor daughter she got me to the right doctors after months of running around. 4 different doctors with frankly no clue. She got me to a pulmonologist who did a lung biopsy and it was discovered that I had Stage 4 lung adenocarcinoma with an activating EGFR mutation at exon 19 with a small lesion on my spine and In my brain) She literally saved my life. Did 30 rounds of radiation as this cancer is not operable. Manifests itself like birdseed throughout the lungs, finally clustering in my right lung. My daughter got the pulmonologist to do a special biopsy, hence finding the EGFR mutation and being placed on Tarceva, as well as blood thinners. This cancer also causes blood clots and I had difficulty breathing. Results: one year later, no need for oxygen and I am trying to resume as normal a life as possible, going to the gym, and dealing with the side effects of Tarceva which in my case were minimal. One added unexpected result- I have the longest eyelashes in town.
-
I am new to this site hope I am doing this right. I am a lung cancer survivor. Never smoked. Due to the efforts of my doctor daughter she got me to the right doctors after months of running around. 4 different doctors with frankly no clue. She got me to a pulmonologist who did a lung biopsy and it was discovered that I had Stage 4 lung adenocarcinoma with an activating EGFR mutation at exon 19 with a small lesion on my spine and In my brain) She literally saved my life. Did 30 rounds of radiation as this cancer is not operable. Manifests itself like birdseed throughout the lungs, finally clustering in my right lung. My daughter got the pulmonologist to do a special biopsy, hence finding the EGFR mutation and being placed on Tarceva, as well as blood thinners. This cancer also causes blood clots and I had difficulty breathing. Results: one year later, no need for oxygen and I am trying to resume as normal a life as possible, going to the gym, and dealing with the side effects of Tarceva which in my case were minimal. One added unexpected result- I have the longest eyelashes in town.
-
I'm a three and a half year survivor of Stage 2 Adenocarcinoma. I wanted to pay forward some of the great support and advice I received from others when I was first diagnosed and wrote a book about getting diagnosed, having my left upper lung removed, going through chemotherapy, losing my hair, and all the various points along the way. I included some terminology since I had no idea how to speak cancer as well as some resources - most of which I learned about after I was done and was researching for the book. Kirkus did a review of the book, (The Cancer Card, Dealing with a Diagnosis) and says: 'Reflective, upbeat, and hopeful; offers honest insight into the real trials and tribulations of a cancer patient as well as valuable advice for those facing treatment.' Here's a link if you have an interest: https://www.amazon.com/Cancer-Card-Dealing-Diagnosis-ebook/dp/B01LX8RIK1/ref=sr_1_1?ie=UTF8&qid=1476363189&sr=8-1&keywords=the+cancer+card+karen+van+de+water Please let me know if I can be of any help at all to anyone going through - it's a lot. I want to help if I can. All my best - Karen-
- 1
-
-
- lung cancer
- chemotherapy
- (and 4 more)
-
This book is a must read!! I finished "Scanziety: A Retrospection of a Lung Cancer Survivor" over the weekend. I highly recommend this book for patients, caregivers and friends of patients. I don't think that most people understand what our bodies go through during treatment, and Tom certainly had a tough time. I think the book also helps people understand that, while cancer patients do have a cloud of uncertainty that will follow us the rest of our days, we should live each of those days to the fullest. I enjoyed this book and I enjoy Tom's comments and support in this forum. His success story gave me hope when I had mentally started to give in to the dark place. Thank you, Tom.
- 2 replies
-
- 4
-
-
- lung cancer
- survival
- (and 1 more)
-
On August 17, LUNGevity hosted a webinar with Dr. Julie Brahmer to discuss recent clinical trials in immunotherapy drugs. These trials have stimulated a lot of discussion in the lung cancer community. The webinar was moderated by LUNGevity's Vice President of Support & Surivivorship, Katie Brown. Dr. Julie Brahmer is an immunotherapy expert at Johns Hopkins and a member of LUNGevity Scientific Advisory Board. Dr. Brahmer is an expert in the use of immunotherapies to treat lung cancer. She has spearheaded numerous clinical trials for the immunotherapy of lung cancer, including the pioneering trial that led to the approval of nivolumab in the second-line setting for advanced-stage lung cancer. Dr. Brahmer is the director of the Thoracic Oncology Program at the Johns Hopkins Kimmel Cancer Center. She is also a member of LUNGevity’s Scientific Advisory Board. To listen to the webinar and to read the follow-up blog written by LUNGevity's Director of Science Communications, Dr. Upal Basu Roy, please click here.
-
First, I apologize for my English, but it is not my mother tongue. t's a relief for me to have found this site. Three weeks ago I knew that lung cancer came back on my mother. It's been terrible trying to show me strong and secure, confident and full of hope all the time when I only have doubts and fears. 3 years ago she was diagnosed with lung cancer in early stage. She was operated and lived well and believing that the worst was over since then. In January (2016), she began to feel terrible pain column. My parents did not worry more than necessary because she always had back problems. She went to a doctor that, after many exams and because of her medical history, decided to do a bone scintigraphy. Although all medical evidence that there was no trace of cancer along those three years, cancer lung had returned and sprawled to the column. The new diagnosis is lung and bone metastasis. I do not know what stage it is because my parents are reluctant to give details to me and my sister. I do not know if I must respect their wishes and only offer my help whenever they need, respecting their will, or contact the doctor be prepared and be more helpfull whatever comes. After 10 radio sessions and 2 of chemotherapy, her doctor made a gene mutation test and decided to combine Tarceva 150 mg with Zometa (one session a month). Thanks in advance for any light or experience that can help me to face this situation and thus be able to help my mother and father to cross through it all with courage, strength and faith. Tania
