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Found 19 results

  1. 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.
  2. My wife, Heather’s lung cancer was discovered by accident. She was having an abdominal CT scan when the doctor noticed a small shadow on her lower right lobe. She subsequently had a chest CT scan. The Thoracic surgeon felt it was pneumonia scar but it was too small for a needle biopsy so he ordered a PET scan. We went for the PET scan and the radiologist who did the scan also read it and told her immediately that she did not have cancer. (It was not until a couple of years later that I actually read the report which indicated that there had been mild FDG uptake in the upper left quadrant of this spot.) She started having follow-up CT scans every 6 months. On one scan, the report came back that the spot had diminished in size. We were excited because cancer doesn’t shrink but unfortunately not informed enough to know that positioning during the scan can make a difference. She was then moved to an annual CT scan. Heather had her annual scan in July 2012 and we went to her parent’s cottage at the beach for a couple of weeks. When we returned home there a message on our machine to call the Thoracic surgeon’s office for her appointment. This was a new surgeon as the previous one had retired. She called the office and the receptionist said she was booking her for an appointment to see the surgeon because of the growth in her lung. The receptionist assumed that our family physician had informed us. I immediately called our family physician who was doing rounds in the hospital and asked him what was going on. He didn’t realize that the appointment would be set up so quickly and apologized and we made arrangements to meet at his office. We are fortunate to have such a wonderful family physician who we used as the center for all future appointments and advice. Heather underwent a wedge resection on Labour Day weekend 2012 to remove her tumor. The tumor tested positive for NSCLC Adenocarcinoma and was scheduled for a lobectomy to remove the bottom lobe of her right lung. This operation was performed on the Canadian Thanksgiving weekend in October, along with a wedge resection of a nodule in her middle lobe and Lymph node sampling from the mediastinum and hilar. She was Stage 3a T2N2M0 with metastasis in three different lymph node stations. All her lymph nodes also had vascular involvement. Her oncologist patted her knee and told her that she had a 15% probability of surviving 5 years. On New Year’s Eve, ending 2012, Heather began 4 rounds of chemo, Cisplatin and Navelbine followed by 25 radiation treatments. This has been a journey with many ups and downs with a few scares along the way but she is currently stable and enjoying life.
  3. LUNGevity is proud to announce that the Foundation is serving on three subcommittees of Sustainable Healthy Communities, LLC, founded by the National Minority Quality Forum. As one of two US patient advocacy organizations on the Diverse Cancer Communities Working Group (CWG), LUNGevity will bring years of expertise in supporting the lung cancer community to the Cancer Index Subcommittee, the Community and Patient Engagement Subcommittee, and the Diversity in Clinical Research Subcommittee. “We are proud to work with LUNGevity on the Cancer Working Group, given the importance of always asking for and listening to the patient point of view,” said Jeanne M. Regnante, Chair of the CWG. The overarching goal of the Working Group is to ‘spotlight existing inequities in order to identify and deliver solutions to eliminate barriers to lung cancer screening, referral to appropriate healthcare providers, access to treatment, care, support and inclusive cancer research for all.’ Members of the SHC Working Group include national leaders in pharmaceuticals, government, academia, patient advocacy organizations and life sciences. “We’re especially honored to be working with SHC and its partners on eliminating disparities in detection and treatment for cancer patients,” said Andrea Ferris, CEO of LUNGevity. “To achieve our vision of a world where no one dies of lung cancer, we continually strive to identify unreached populations and supply them with information and tools they need to improve their access to care.” Ms. Ferris will be a speaker at the 2018 NMQF Leadership Summit on Health Disparities and Spring Health Braintrust in Washington, DC this April. She and Upal Basu Roy, PhD, MPH, LUNGevity Director of Translational Research Program/Director of Patient FoRCe, will represent the Foundation on the three subcommittees and all future initiatives. Click here to read the full press release.
  4. Here is the weekly clip report: WRC-TV “Exhibitors Guide: Full List of Exhibitors at the 2018 Health and Fitness Expo” https://www.nbcwashington.com/news/health/Exhibitors-Guide-Full-List-Exhibitors-Health-and-Fitness-Expo-474441813.html Immuno-Oncology News “Bristol-Myers, Nektar Developing Cancer Therapy to Be Used with Checkpoint Inhibitors” https://immuno-oncologynews.com/2018/02/26/bristol-myers-squibb-nektar-cancer-immunotherapy-checkpoint-inhibitors/ Color.com – Blog/Podcast “Adam Klein, Winner of 2016 Survivor, on Becoming a Leading Lung Cancer Advocate” https://blog.color.com/adam-klein-winner-of-2016-survivor-on-becoming-a-leading-lung-cancer-advocate-f2ca8f48415 OncLive “Expert Highlights Immunotherapy Use in Stage III NSCLC” http://www.onclive.com/web-exclusives/expert-highlights-immunotherapy-use-in-stage-iii-nsclc OncLive “Dr. Gieschen on the Side Effects of Radiation Therapy in NSCLC” http://www.onclive.com/onclive-tv/dr-gieschen-on-the-side-effects-of-radiation-therapy-in-nsclc The Baltimore Sun “Orioles Notes: Lee Expected to Miss Four Weeks; Hays to Get Break with Bum Shoulder” http://www.baltimoresun.com/sports/orioles/blog/bs-sp-orioles-notes-20180301-story.html Genome Web “As Cancer Immunotherapy Evolves, Challenges Compound for Diagnostic Development” https://www.genomeweb.com/molecular-diagnostics/cancer-immunotherapy-evolves-challenges-compound-diagnostic-development Cure Today “Taking Action to Address Lung Cancer Across the US” https://www.curetoday.com/articles/taking-action-to-address-lung-cancer-across-the-us Virginia Business "50 Most Influential Virginians - Lynne Doughtie" http://www.virginiabusiness.com/news/article/50-most-influential-virginians-2018
  5. Do you want to learn how to become an empowered, informed lung cancer advocate? Join LUNGevity Wednesday, February 7, for a Twitter Chat about Caregiver Advocacy. Join or follow the conversation using the hashtag #LCCaregiver. Lung Cancer Caregiver chats are hosted the first Wednesday of every month from 8:00PM - 9:00PM ET.
  6. If you have been diagnosed with metastatic non-small cell lung cancer (NSCLC), you may be able to participate in a survey study. ICON is a global health research company contracted by pharmaceutical companies to conduct research. ICON is looking for U.S. patients to participate in a survey for people who have been diagnosed with metastatic NSCLC. The purpose of this study is to gain insight into the preferences of patients for treatment. This study consists of a one-time online survey that will take about 30 minutes to complete. Participants will receive $30 if they are eligible and complete the entire survey. If you are interested in participating in this survey, please visit: http://survey.euro.confirmit.com/wix/p1860621515.aspx This survey has been approved for posting by LUNGevity.
  7. In December 2016, I started experiencing a lot of shoulder pain and then back pain leading to shortness of breath. I went in for an X-ray and MRI, and was told I had pneumonia. I knew that wasn’t correct because I hadn’t been sick enough to get pneumonia. I spoke to my doctor and insisted on being seen again right away. I was sent to the hospital to have a CT scan, which showed fluid in the lining of my lungs. I had the fluid tapped for testing and it was bloody. I was referred to a thoracic surgeon and underwent surgery to have the fluid drained in March of 2017. During surgery they did a scope to look around and found and removed a cancerous mass. I was diagnosed with Stage IV adenocarcinoma lung cancer. I was in the hospital for five days. When I got out on a Friday, I met with my oncologist. They decided to test the mass for genetic mutations. My oncologist called me at home to share the results. I was expecting bad news, but she said she had good news. Genetic testing showed that my cancer was caused by the ALK gene mutation. She told me that having a genetic mutation was like winning the lung cancer lottery because there were very effective treatment options. At the time, Alcensa was still a second-line treatment, but my oncologist and I pushed for me to be able to start taking the drug. It was so new that I was one of the first patients at my hospital to start taking it. Just a few weeks after I started taking Alcensa, it was approved as a first-line treatment. I have some physical challenges that impact me. Some of them are shortness of breath, muscle pain and fatigue. I have nerve pain from my thoracic surgery as well. I am also dealing with mental challenges. I am working fulltime however, I struggle with memory loss, focus and vision issues, all of which are side effects of my treatment. I also deal with some depression. I explain it to family members as mental torture. You try to enjoy living but, you are always aware that your life can be cut short at anytime. The cancer consumes your thoughts 24/7. That is really hard. I recently became a member of the ALK Positive Facebook group, which led me to LUNGevity Foundation. ALK Positive has partnered with LUNGevity for a research grant for our cause. It’s a great partnership. I wish I would have known about LUNGevity and the ALK Positive online support group right away. LUNGevity really advocates for patients. They are such a great source for support and information. I noted that they share survivor stories and I immediately decided that I wanted to share my story with others. The more we talk about lung cancer, the more others learn and we can get rid of the stigma. Putting faces to this disease makes a real impact. I would tell a newly diagnosed patient to reach out to support organizations like LUNGevity. Knowledge is power and there is hope. The more you know about this disease and advocate for yourself the better off you will be. It’s a scary road but a little easier when you find good support sources. Survivorship means I am living with this disease. I hope to keep living with this disease for many years and provide support and advocate for others. I do not want to sit and wait, I want to take action to help myself and others as much as possible. We need to fight for more research funding and to make others aware of this disease. I hope to touch others with lung cancer and inspire them to share their story and find their voice to advocate. I want to get the word out about ALK lung cancer and remove that stigma that it’s a smokers’ disease. Whether you smoked or not doesn’t matter. If you have lungs, you can get lung cancer. I hope that as others find their voices too, we can get the word out about how we lack sufficient funding for research. That is really important to me. 433 people die each day of lung cancer – we have to change this!
  8. Here is the weekly clip report: The ASCO Post “Stand Up To Cancer Launches ‘Cancer Interception’ Teams to Detect and Treat Cancer at Earliest Stages” http://www.ascopost.com/issues/november-25-2017/stand-up-to-cancer-launches-cancer-interception-teams-to-detect-and-treat-cancer-at-earliest-stages/ Stanford Medicine News Center “Stanford Scientists among Those Funded by Stand Up To Cancer” https://med.stanford.edu/news/all-news/2017/11/stanford-scientists-among-those-funded-by-stand-up-to-cancer.html Immuno-Oncology News “Imfinzi Increases Time for Non-Small Cell Lung Cancer to Progress, Phase 3 Trial Shows” https://immuno-oncologynews.com/2017/11/28/phase-3-trial-shows-imfinzi-lengthens-time-for-non-small-cell-lung-cancer-to-return/ Targeted Oncology “Ahead of NSCLC Approval Decision, FDA Now Weighing Durvalumab Data in NEJM” http://www.targetedonc.com/news/ahead-of-nsclc-approval-decision-fda-now-weighing-durvalumab-data-in-nejm OncLive “Immunotherapy to Have Emerging Role in Squamous Cell Lung Cancer” http://www.onclive.com/web-exclusives/immunotherapy-to-have-emerging-role-in-squamous-cell-lung-cancer Business Wire “Impassioned Lung Cancer Survivors Join Your Cancer Game Plan, Merck to Advocate for Others Facing This Highly Stigmatized Disease” http://www.businesswire.com/news/home/20171129005025/en/Impassioned-Lung-Cancer-Survivors-Join-Cancer-Game The Baltimore Sun “Life After Lung Cancer: How One Survivor is Fighting for Others” http://www.baltimoresun.com/bp/blt-ara-31849-life-after-lung-cancer-how-one-survivor-is-fighting-for-others-20171129-adstory.html National Press Club “Life After Cancer: Addressing Survivorship in Cancer Care” http://www.press.org/events/life-after-cancer-addressing-survivorship-cancer-care Markets Insider “Biocept and UC San Diego Medical Center Announce Clinical Study Collaboration to Demonstrate Utility of Biocept’s Liquid Biopsy Test in Immunotherapy” http://markets.businessinsider.com/news/stocks/Biocept-and-UC-San-Diego-Medical-Center-Announce-Clinical-Study-Collaboration-to-Demonstrate-Utility-of-Biocept-s-Liquid-Biopsy-Test-in-Immunotherapy-1009786790 Medical Xpress “Two-Drug Combination May Boost Immunotherapy Response in Lung Cancer Patients” https://medicalxpress.com/news/2017-11-two-drug-combination-boost-immunotherapy-responses.html Reuters “FDA Aims to Approve More Drugs Based on Early Clinical Data” https://www.reuters.com/article/us-fda-hearing-testimony/fda-aims-to-approve-more-drugs-based-on-early-clinical-data-idUSKBN1DU2DS Healio “Eight Important Updates in Lung Cancer” https://www.healio.com/hematology-oncology/lung-cancer/news/online/{56102e9b-63d2-4eea-8859-01b452dbe2b3}/eight-important-updates-in-lung-cancer Investor’s Business Daily “This Biotech Launched to a Record High on Cancer Test Approval” https://www.investors.com/news/technology/this-biotech-launched-to-a-record-high-on-cancer-test-approval/ DOD Congressionally Directed Medical Research Programs “Melissa Crouse – Lung Cancer Warrior, Mentor and Advocate” http://cdmrp.army.mil/cwg/stories/2017/melissa_crouse_profile Business Wire “FDA Approves Foundation Medicine’s FoundationOne Cdx, the First and Only Comprehensive Genomic Profiling Test for All Solid Tumors Incorporating Multiple Companion Diagnostics” http://www.businesswire.com/news/home/20171130006320/en/FDA-Approves-Foundation-Medicine’s-FoundationOne-CDx™-Comprehensive Markets Insider “Advocates Reveal Cancer Survivorship Challenges and Resources During National Comprehensive Cancer Network’s Patient Advocacy Summit” http://markets.businessinsider.com/news/stocks/Advocates-Reveal-Cancer-Survivorship-Challenges-and-Resources-during-National-Comprehensive-Cancer-Network-s-Patient-Advocacy-Summit-1010204005
  9. Possible advocacy opportunity for NSCLC stage 3 patients who have chemo/radiation within the last year. Please email [email protected] if you would like to learn more.
  10. September 14 is the National Day of Action for Medical Research! The purpose of the Rally for Medical Research and the National Day of Action is to call on our nation's policymakers from all 50 states to make funding for National Institutes of Health (NIH) a national priority and raise awareness about the importance of continued investment in medical research that leads to MORE PROGRESS, MORE HOPE and MORE LIVES SAVED. Aside from supporting lifesaving research, NIH funding sustains a vibrant and innovative 21st century U.S. economy and supports jobs. Thanks to the $2 billion increase to the NIH budget that Congress approved for FY 2016, the U.S. saw an additional economic gain from investing in the NIH of $4 billion compared to 2015. In 2016, NIH funding and jobs generated by that funding produced $64.799 billion in new economic activity compared to $60.717 billion in 2015. Nineteen states saw an economic gain of $1 billion or more. Click here for more information and to register.
  11. I noticed something recently at the in-person support group I facilitate. Caregivers in my group didn't speak up about issues or feelings unless the facilitator or group leader mentioned them first. "Like Jan said, I have feelings of ____ too." After the third time, it occured to me that caregivers are either waiting to have their feelings validated by someone else or didn't realize they had been feeling those feelings. I remember being a caregiver for my father and how all-encompassing that was. Nothing else mattered to me at the time. Everything was about my dad's cancer, his feelings, his happiness, his peace and comfort. I don't think I got more than 2-3 hours of sleep a night during those 11 months- there was just so much to do! I completely lost myself and any sense of "me" during my caregiving. I would never consider taking time for myself, taking a break or openly expressing my frustrations and concerns- that would be selfish- afterall, I wasn't the one in treatment with cancer. I wasn't the one fighting for my life, right? If given the opportunity then, would I have taken advantage of caregiver resources or support groups? Would I even know what I was feeling or how to describe it? Until we are able to have caregiver-only support groups in every community, how can we give caregivers the encouragement or "permission" to put a voice to what they are feeling? How do we as caregivers divorce ourselves from the guilt that accompanies self-care? Thoughts?
  12. Advocates are courageous and brave as they raise awareness or work tirelessly to change injustices and create a better world. Most people become advocates because they were personally affected by the cause they are fighting for. While they have smiles on their faces and work to inspire...there's a part of their hearts that are always grieving for the love they lost or the life that once was. At least thats true for me- even after 15 years. While our personal experience fuels us during advocacy events and awareness days we are also acutely aware of the absence of those who were lost to the disease and reminded that a part of our life is forever changed. Advocacy is a way to turn a terrible life experience into education, awareness, and support for soneone facing similar challenges. Advocacy events and activities can be personally rewarding and advocacy efforts can assist others and even change their lives. Being an advocate is amazing and meaningful. While I celebrate the progress I've been a part of and the lives I've helped to change, a part of me is alwaying grieving a little bit. I've learned that grief is most definitely one emotion that fuels advocacy. As long as I advocate for people with lung cancer, I will never stop grieving for my dad. Everything I advocate for reminds me that he's no longer here. Part of me finds comfort that he is still "with" me after all these years while other relatives have long stopped saying his name. While I'm on a mission to provide all these things to improve a patients survivorship, I'm reminded that my dad never had these things and he did not have a fair shot at survival. It's really bittersweet. Even though there is a an undercurrent of sadness-- turning tragedy into purpose and a mission honors my dad. Its also the most rewarding feeling to serve others and help to change their lives
  13. When diagnosed with lung cancer, there are often more questions than answers. How do you get information you need to make the best decisions about your care? When exactly does survivorship begin? Katie Brown, Vice President of Support and Survivorship Programs at LUNGevity Foundation, shares her personal connection to lung cancer and why she is so passionate about helping patients find the best resources at the time they need them the most. https://www.patientpower.info/video/empowering-lung-cancer-patients-through-advocacy
  14. A clinical trial is a type of research study that tests how well medical approaches—screening, prevention, diagnosis, or treatment—work in people. Clinical trials can provide access to new approaches to lung cancer patients. However, most lung cancer patients do not participate in clinical trials. Please complete this survey about clinical trials by answering from your personal experience. The survey is 100% anonymous. THANK YOU for your time! Survey for Survivors: https://www.surveymonkey.com/r/Survivor_Clinical_Trial_2017 Survey for Caregivers: https://www.surveymonkey.com/r/Caregiver_Clinical_Trial_2017
  15. 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.
  16. 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.
  17. until
    The National HOPE Summit takes place each Spring and kicks off Lung Cancer HOPE Month in May. This year At HOPE Summit, participants learn, collaborate, advocate, and share their stories about living with lung cancer. The summit features inspirational speakers, medical expert forums, lung cancer survivor-specific sessions, and opportunities for lung cancer survivors to connect with other survivors. There are sessions for both those in active treatment and those out of treatment to address their specific needs. In addition to lung cancer survivors, caregivers and medical professionals wanting to learn more about lung cancer survivorship are also welcome to register. Click here to learn more about National HOPE Summit!
  18. 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.
  19. 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
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