LaurenH

Hi, Randa, Welcome to LCSC. I just wanted to check in and see how you're doing. Please post an update when you can. We are here for you and we hope to hear from you soon. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, M, Welcome to LCSC. We've been thinking about you and your mom. How are you both doing? This community is a great place to connect with survivors and other caregivers who are going through similar situations. Please let us know if you have any questions or would like more information about LUNGevity's support and survivorship programs. We hope to hear from you soon. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Kaly, Welcome to LCSC. We hope to hear from you again soon with an update on how you and your brother are doing. I know the distance must be very difficult. He is fortunate to have people who love him all over the world. Please let us know if you have questions or would like resources/information on a particular topic. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Sandra, Welcome to LCSC. I am happy that you've already connected with some of our members. We are here to support you and help you find information and resources to help you navigate lung cancer. Please feel free to ask questions, join in the ongoing conversations on the discussion boards, and let us know if you'd like more information about LUNGevity's support and survivorship programs. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Juanita! We are so glad to have you on LCSC! Thank you for being an incredible advocate and sharing your story to inspire people living with lung cancer to keep following their dreams. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

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

Hi, Mommy's girl, Welcome to LCSC. I am sorry that you and your family are going through this. I hope you can connect with many other caregivers and lung cancer patients in this community who can share their personal experiences. I put out a call to respond to your post on some of our other social media private groups. I encouraged anyone with information or experience with Tarceva and kidney dialysis to respond to this thread. Please let me know if you would like additional resources or information about lung cancer or targeted therapy or if you'd like to learn more about our support programs and I will be happy to help. Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Julie, That sounds like it was quite an ordeal! I'm glad it's over and done with. Please keep us posted on the results. Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Gloria, Welcome to LCSC. I am glad that alectinib is working where it counts! I have heard from several ALK patients that alectinib has some pretty "noteworthy" side effects. I will reach out to them and encourage them to respond to your post. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

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.

Hi, Lisa, Welcome to LCSC. I will reach out to some of our members with ROS1 and encourage them to introduce themselves to you in this threat. This site is a great place to connect with others navigating a similar diagnosis and to learn from their experiences. In the meantime, please feel free to explore the discussion boards and join in any conversation that resonates with you. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Laura, Welcome to LCSC. This site is a great place to connect with others navigating a lung cancer diagnosis and to find resources and information. There have been several breakthroughs in research in the past few years and there are more treatment options in the pipeline. If you're comfortable sharing the results of your tests this week, some of our veteran members may be able to provide some insight and encouragement based on their own experiences. I am also happy to provide you with information about LUNGevity's support resources. Please know that you are not alone and that we are here for you. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Tony, Welcome to LCSC. I hope that you make many meaningful connections with other members on this site. This is a great place to ask questions and get support. Tom has already provided links to information about immunotherapy and checkpoint inhibitors. I am happy to help you find additional resources and support. Please feel free to post any questions or join some of the ongoing conversations in the discussion boards. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Susan, thank YOU for all you do for the members of this community! You are such a positive presence and I am especially grateful for the lengths you take to welcome people to this site and help them feel like they are not alone. I am very glad that you joined LCSC and that you continue to be a source of hope, strength, and support for all of us. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Julie, Welcome to LCSC. Please keep us posted! I hope you get some answers from your appointment today. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Brenda, Welcome to LCSC. I am happy to see that you've already connected with Tom and Susan. As Tom mentioned, there have been many breakthroughs in research and treatment that are improving quality of life and survivorship. Please feel free to post your questions and explore some of the discussions on this site. You're welcome to join in on any of the conversations or start new topics that are personally relevant to you. I am happy to help you find additional resources and support if you'd like. In the meantime, please know that we are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Carl, Welcome to LCSC. I am glad to see that you've met several of our members already. This site is a great place to share your experiences and learn from others experiences and connect with people who are also living with a lung cancer diagnosis. If you have any questions before your appointment next month, please feel free to share them in the forums. Tom also writes an excellent blog for this site. If you are looking for resources on a particular topic, I am happy to help. LUNGevity's Lung Cancer 101 site is a great place to start. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Judy, We want to make sure you are able to use the app. I will private message you to see if we can work together to figure out the issue. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

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.

A market research company has asked us to share a survey opportunity for patients within the US with Stage IV lung cancer. Those who qualify and complete the 60-minute telephone survey will be compensated if you complete the screener and telephone interview. To see if you qualify for this survey, click here www.alphadetail.com/lcpatientstudy Please note: you will only be compensated for completing this in its entirety once. If you need any additional information please contact Elizabeth Lawson (ELawson@us.imshealth.com)

Hi, Robert, Welcome to LCSC. This is a great community to connect with others who are navigating a lung cancer diagnosis. I am glad that Tom has already shared some helpful resources with you. Please feel free to ask questions and explore the discussion boards and blogs. If you would like additional resources or support, I will be happy to help. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Janet, Welcome to LCSC. This is a great place to connect with others who are on a similar journey. I am happy that you've already been able to connect with Susan and Tom. Many of our members have a great deal of practical knowledge from their own personal experiences that they are happy to share in the discussion boards. I hope that your appointment went well last week. Please keep us posted and feel free to ask any questions you may have. Please let me know if you'd like additional information/resources about a particular topic or if you'd like to learn more about LUNGevity's support programs and resources. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Susan, It sounds like you and your doctor have a solid plan in place. Now is definitely the time to be determined and focused on getting through treatment so that you can live aloha in just a few short months! As always, keep us posted! Lauren -- Digital Community Manager LUNGevity Foundation

Mally, We are so glad to have you in LCSC! I am happy that you are part of this community. When my uncle was first diagnosed in September 2011, it was both gut-wrenching and heartbreaking. My family is incredibly close and we were so afraid of losing him. We looked up as much information as we could find, including statistics and survival rates. At the time, we found a statistic that said the five-year survival rate for lung cancer was only 16%. It may sound strange, but that was better than we expected! Even though 16% is a low number, it's still higher than 0%. For me and my family, as long as there wasn't 100% chance that my uncle was going to die from lung cancer, we could find hope and fiercely hold on to it. My uncle has an incredibly positive attitude, and he's always been the type of person to see the glass as half full rather than half empty. We adopted that mantra, choosing to see the positive rather than the negative. At some point as human beings, we all do have to face our own mortality, but we chose to follow my uncle's example and live as much in the present as possible. Every milestone and holiday that we've had with him over the past five and a half years has given us another reason to celebrate. His lung cancer has forced us to acknowledge and put greater value on what is most important to us: love, happiness, and health - even when it isn't perfect. Different sites will give you different statistics, or as Tom calls them "inaccurate generalized explanations." The site with the 16% statistic that we read five years ago includes a disclaimer that says "because survival statistics are based on large groups of people, they cannot be used to predict exactly what will happen to an individual patient. No two patients are entirely alike, and treatment and responses to treatment can vary greatly." We have to face the reality that lung cancer is part of our lives but we cannot let it consume our lives. I am happy that you're taking Susan's advice and enjoying each day as it comes. Those of us whose lives have been touched by cancer may have a better understanding of the fact that each day is a gift and should be treated as such! We are here for you. Post as much and as often as you'd like! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Vicky, Tom and Susan are right - this is a great place to find advice and support. Please feel free to post as much information as you're comfortable sharing about your diagnosis and treatment plan and any questions you may have. The members on this site are patients/survivors, caregivers and advocates who have a lot of experience with navigating a lung cancer diagnosis. Lung Cancer 101 (the section of LUNGevity's website that Tom mentioned in his post) is a great place to start looking for information. I am happy to help you find any additional resources or support that you may need. This site has over 11,000 members, which means that there are 11,000+ reasons to have hope! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation