LaurenH

It was a great segment, Susan! I think you and Katie did a fantastic job challenging the stigma! L

Hi, Simeon, I'm sorry it's been a difficult time for you. This conversation is in one of the online discussion forums, so it's not a private chat. When you post in a forum, all members on this site can see the content and reply. If you want to send a private message to a specific user, you can do so by clicking the envelope icon at the top of the page. If you'd like your post to be visible to all LCSC members, this is a good place to post so that more people can respond. We are here for you. How can we help? Lauren -- Digital Community Manager LUNGevity Foundation

Hi, BridgetO, Keep us posted on what your pulmonologist says. In the meantime, I'll reach out to some of our members to see if anyone can share their experience with a similar situation. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

LUNGevity Foundation, the nation’s leading lung cancer-focused organization, announced the funding of two research teams that will focus on lung cancer interception: catching precancerous cells and blocking them from turning into cancer cells. These awards are the first-ever Stand Up To Cancer awards focused on the early detection and interception of lung cancer and build on LUNGevity’s eight-year direct investment in critical early detection lung cancer research. "Finding lung cancer early, when it is most treatable, is a critical step to saving thousands of lives," said Andrea Ferris, President and CEO of LUNGevity, "especially since currently only 15% of patients are diagnosed at this stage. Our long-term strategic focus and investment in finding better ways to detect, diagnose, and now intercept lung cancer in its earliest stages is strengthened by this collaboration with SU2C and the American Lung Association’s LUNG FORCE initiative. It is our goal to find noninvasive, widely available diagnostic and early detection tools that will dramatically change outcomes for people with lung cancer.” The interdisciplinary and multi-institutional awards include a Lung Cancer Interception Dream Team, and a Lung Cancer Interception Translational Research Team. SU2C-LUNGevity Foundation-American Lung Association Lung Cancer Interception Dream Team: Intercept Lung Cancer Through Immune, Imaging, & Molecular Evaluation (InTIME) Funding: $5 million Leader: Avrum Spira, MD, professor of medicine, pathology and bioinformatics, and director of the Cancer Center at Boston University-Boston Medical Center Co-leader: Steven Dubinett, MD, associate vice chancellor for research at UCLA and director of the lung cancer research program at the Jonsson Comprehensive Cancer Center The Lung Cancer Interception Dream Team will develop diagnostic tools, such as nasal swabs, blood tests, and radiological imaging, to confirm whether lung abnormalities found on chest imaging are benign lung disease or lung cancer. To protect against recurrence of disease that has already been successfully treated, new blood tests will help identify patients at the earliest stages of recurrence, enabling timely interventions such as immunotherapy. "We plan to develop technology that can, in a very sensitive way, pick up the small amount of DNA that might be present in the blood of someone who’s harboring a lung cancer deep within their lung tissue – a noninvasive way of measuring a person’s risk of having lung cancer," Dr. Spira said. SU2C-LUNGevity Foundation-American Lung Association Lung Cancer Interception Translational Research Team: Blood-based Early Interception of Lung Cancer Funding: $2 million Leader: Lecia Sequist, MD, MPH, associate professor of medicine, and director of the Center for Innovation in Early Cancer Detection (CIECD) at Massachusetts General Hospital Co-leader: Maximilian Diehn, MD, PhD, assistant professor of radiation oncology, Stanford University School of Medicine The Lung Cancer Interception Translational Research Team will develop a lung cancer interception assay (LCIA) that can be used in conjunction with low-dose CT scans, based on blood-based assays that examine circulating tumor cells and circulating tumor DNA. After completing pilot testing as part of this Translational Research Grant, the team plans to move the LCIA forward to larger, prospective clinical trials. "It’s extremely frustrating that we’re not technically able to find lung cancer earlier in the majority of patients,” Dr. Sequist said. “We need to change the paradigm that we use to identify patients so that they are found early enough to offer them curative treatment. If we really want to save more lives from lung cancer, we have to exponentially improve our diagnostics." LUNGevity is the only lung cancer nonprofit with a programmatic focus on funding early detection research, 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%. These projects expand on LUNGevity’s eight-year investment in early detection research with the goal of developing an effective, widely available, noninvasive way of finding lung cancer early in all populations. Click here to read the full press release.

Hi, Jennifer, I'm glad that you and Jay are home! Keep us posted on the clinical trial. We'll be thinking of you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

That's great news, Michele! I am happy for you and your husband. Thank you for sharing an update! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Thank you for sharing, bluesky! Lauren -- Digital Community Manager LUNGevity Foundation

Here is the weekly clip report, including two big announcements from LUNGevity: MedCity News “A Snapshot of Personalized Medicine in Practice” https://medcitynews.com/2017/10/snapshot-personalized-medicine-practice/ PR Newswire “Alexander F. Stern Named Chairman of the Board of LUNGevity Foundation” http://www.prnewswire.com/news-releases/alexander-f-stern-named-chairman-of-the-board-of-lungevity-foundation-300533962.html Markets Insider “Marc Swerdlow Named Vice-Chairman and Treasurer of the Board of LUNGevity Foundation” http://markets.businessinsider.com/news/stocks/Marc-Swerdlow-named-Vice-Chairman-and-Treasurer-of-the-Board-of-LUNGevity-Foundation-1003678880 Cure Today “Tagrisso Approved for Frontline Lung Cancer Treatment” http://www.curetoday.com/articles/tagrisso-approved-for-frontline-lung-cancer-treatment Medical News Bulletin “Can Genetic Screening Improve Lung Cancer Prognoses?” https://www.medicalnewsbulletin.com/gene-screening-lung-cancer-prognoses/ Cure Today “Personalized Treatment Needed for Advanced Lung Cancer” http://www.curetoday.com/articles/personalized-treatment-needed-for-advanced-lung-cancer Medical Xpress “A New Class of Drugs Aims to Exploit Cancer Cells’ Weaknesses” https://medicalxpress.com/news/2017-10-class-drugs-aims-exploit-cancer.html PR Newswire “Stand Up To Cancer Awards Moffitt $2.67 Million to Study New Lung Cancer Immunotherapy” http://www.prnewswire.com/news-releases/stand-up-to-cancer-awards-moffitt-267-million-to-study-new-lung-cancer-immunotherapy-300535599.html Los Angeles Times “Curing Cancer Isn’t Always the Goal. Sometimes You Just Want It to Be a Manageable Chronic Disease” http://www.latimes.com/science/healthy-living/la-he-hl-cancer-cure-20171012-story.html Los Angeles Times “With Cancer, It’s Not Necessarily Where It Starts but Hot It Starts” http://www.latimes.com/science/healthy-living/la-he-hl-cancer-genetics-organ-20171012-story.html The Wall Street Journal “Immunotherapy Treatments for Cancer Gain Momentum” https://www.wsj.com/articles/immunotherapy-treatments-for-cancer-gain-momentum-1507825152

Hi, JustMe, Just wanted to check in and see how you and your husband are doing. Please post an update when you can, even if it's just to vent. We are here for you and happy to offer encouragement and advice. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, bes, Your husband is lucky to have his own personal helicopter! This is a tough disease and I'm sure he is very grateful for your support. I'm glad you've connected with so many of our members already and have gotten answers to some of your questions. Please feel free to keep exploring the discussion boards and blogs and join in the conversations when you're ready. I am also happy to help you find more information and support resources through LUNGevity, so do not hesitate to message me. We'll be thinking of you and your husband this week. Please let us know how the appointment goes on Tuesday! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Mohan, Welcome to LCSC. I am sorry to hear about your father's diagnosis. This members on this site are survivors (many long-term) and caregivers with a wealth of experience navigating a lung cancer diagnosis. They can provide encouragement and share their experience and in some cases, advice. If you post in the Introduce Yourself forum, more members are likely to see it and respond. Here is a link: http://forums.lungevity.org/forum/3-introduce-yourself/ Please let me know if you have any questions about this online community. I am also happy to provide more information for you about LUNGevity's support programs and resources. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi Stephanie, Just wanted to check in and see if you have your CT results. If you have any more questions once you have the results of your tests and more information about your treatment plan. I hope that you can get some answers soon. We're here for you when you're ready. Lauren -- Digital Community Manager LUNGevity Foundation

I was first diagnosed with small cell lung cancer (SCLC) in January of 2014 from a biopsy of the tumor that was sitting on top of my left lung. I had no symptoms I was ill yet I was urged by a radiologist who was a friend of the family to get an early lung cancer detection CT scan of the chest because I had been a smoker years before and grew up in a household of heavy smokers. So for me, it came as a total shock when I was told my diagnosis and “to get into the city for treatment, ASAP. “ For the next two years, I went through the standard treatment for limited stage SCLC, -chemo, radiation to the tumor, and prophylactic radiation to my brain. Good news, the tumor had shrunk but bad news, a new one had begun to grow in my abdomen. Now there was no option left for me except to go on an immunotherapy clinical trial, which I began in June 2015. I know I’m one of the lucky ones. I’ve survived over two years thanks to being enrolled in the clinical trial with the bonus of having virtually no side effects. I first heard about LUNGevity through my oncologist when he invited me to be one of his “patient-guests” at LUNGevity’s Gala in 2016. Encouraged by the speakers and to learn about more about LUNGevity’s focus on increasing the quality of life for cancer survivors and their caregivers, I contacted Katie Brown, LUNGevity’s Vice President of Support & Survivorship, to become a volunteer. I wanted to support other SCLC patients who were probably as confused and conflicted about their choices as I was when I was first diagnosed with this less common type of lung cancer. Katie gave me information about “LifeLine”, LUNGevity’s peer-to-peer support program that matches patients and caregivers to mentors with similar diagnoses. LifeLine mentors forge a personal connection by getting to know their mentee, offering words of encouragement, and by sharing aspects of their own cancer experiences. LUNGevity connected me to my first LifeLine mentee in early 2017. When I’m on the phone with mentees, I try to get a quick take on what that individual would like to get from speaking with me. I usually keep my personal saga with SCLC brief so the mentees have a chance to tell me what’s been on their mind. Sometimes, a particular part of their cancer situation is upsetting or causing frustration, while other times, they would just like to talk it out and have me listen. If I hear we have points in common, I’ll say something like “I get it. X-Y-Z happened to me, too!” Then I reassure them that they will get though it and find the solution that’s right for them. Some mentees just want a one-time chat to know someone else has survived the same illness. Others, who don’t have anyone they feel close to, might call me more frequently. One time I called Katie to get her advice on how to handle a situation that I felt was beyond my capacity to deal with. She was very understanding and together we came up with workable solution. So if you become a LifeLine mentor, don’t be afraid to reach out to the LUNGevity staff. They’re there to support you, too. The most rewarding thing about being a mentor is hearing someone newly diagnosed with SCLC say, ”Oh I’m so glad I talked to you. I feel like this is doable now. If you survived, maybe I can too.” Hope is the most precious gift I could ever offer somebody, which may sound a bit drippy, but it’s so true. I get to offer hope every time I tell my story that I have survived longer than I, or anyone else, would’ve believed possible. Photo credit: Ben Hider for the CURE Magazine

Hi, Jane, I'm glad that you've joined this community and that you connected with Nikole. LifeLine is a wonderful program and Nikole does an incredible job helping people connect with the right mentors. Please do not hesitate to reach out and remember that we are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Jephkay, That's wonderful news! We are very happy for you both. Please continue to keep us posted! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Anna, Welcome to LCSC. I am sorry that you are going through a difficult time. I am happpy to see that you've already connected with some of our members. This community is made up of survivors (including many long-term survivors) as well as caregivers and advocates. Many people are willing to share their own personal experiences and offer encouragement and advice. Please feel free to explore the message boards, ask questions, and join in on any conversation that resonates with you. I am happy to provide you with resources and information about LUNGevity's Support & Survivorship program. Please do not hesitate to reach out and remember that we are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Darleen, Welcome to LCSC. I am glad to see you've already connected with Tom and Susan. Lung cancer can certainly be overwhelming. Like Tom and Susan said, sometimes the best advice can be "Just keep living!" If you're familiar with the movie Finding Nemo, you can picture Dory saying it. Please feel free to explore the message boards, ask questions, and join in on any conversation that resonates with you. I am happy to provide you with resources and information about LUNGevity's Support & Survivorship program. Please do not hesitate to reach out and remember that we are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Deana, Welcome to LCSC. I am sorry that you and your family are going through this difficult time. I am glad to see that you've connected with several of our members. This community is full of people with experience navigating a lung cancer navigation, either their own or a loved one's. If you'd like, I would be happy to provide you with more information about LUNGevity's Support & Survivorship programs. Here is a link to our Caregiver Resource Center. Please continue to keep us posted on your dad's status and know that we are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, bes, I am sorry to hear about your husband's diagnosis. We are glad that you've joined this forum. This is a great place to connect with other caregivers and talk to survivors who have experience navigating a lung cancer diagnosis. Please feel free to explore the message boards, ask questions, and join in on the conversations. I am also happy to provide additional resources and information about LUNGevity's Support programs. Please do not hesitate to reach out! We are here for you. With gratitude, Lauren --

Find A Cure Panel specializes in patient research for rare and serious disease and they have some current research for people and caregivers of people with Small Cell Lung Cancer (SCLC). To qualify for this research, you or your loved one with Small Cell Lung Cancer (SCLC): 1) Must have a diagnosis with Small Cell Lung Cancer (SCLC). 2) Be over 50 years old. 3) Have EXTENSIVE SCLC. Sometimes referred to as stage 3, stage 4 or metastatic SCLC. 4) Must have some experience with smoking. If you/your loved one NEVER SMOKED then you won’t qualify, unfortunately. 5) If you are a caregiver, you must be knowledgeable about your loved one’s condition and treatment. 6) If you are a caregiver who recently lost your loved one with SCLC, you can still participate if you lost your loved one in the last 12 months. It is easy to participate in. It’s one confidential and anonymous phone call with one moderator talking about your experience with Small Cell Lung Cancer (SCLC). If you are interested in participating, please contact FACP at info@findacurepanel.com and reference FACP/SCLC

Faye, Tom and Susan are right. No one deserves cancer. And anyone with lung cancer deserves to be treated with compassion, not callousness. LCSC is a place where you can find support and understanding. At LUNGevity, we are working very hard to end the stigma and help secure an investment in research that matches the impact of this terrible disease. Thank you for sharing your story and being part of this community. We are here for you. Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Ray, I hope that the pain lessens with time. You've shown incredible strength and perseverance. We know you can get through this. As always, we are here for you. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Judy, We are glad to have you back! I'm glad to hear that you've finished treatment and that your scans showed that your tumors have shrunk. Please keep us posted on how you're doing! Thank you, Tom and Steff, for being great sources of information! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Sally, I will see if any of our members have experience with this treatment and ask them to chime in on this thread. Keep us posted! We'll be thinking of you. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Around the first of December 2015 I noticed I was having some shortness of breath when I climbed the flight of stairs to my apartment. I didn't think much of it at the time. I just chalked it up to my age (62) and being out of shape. As time went on the shortness of breath became worse and I developed a persistent cough with some transient hoarseness. I decided it was time to see the doctor. My primary care provider diagnosed me with asthma/bronchitis, which I had many times over the years in the past. He put me on an antibiotic and an inhaler which usually worked. As the days went by and I did not get any better, I went back to see him. He switched the antibiotic and prescribed a cough syrup. I still wasn’t getting relief, so I went back a couple more times. The doctor seemed to be getting frustrated with me, and I knew I needed to see a specialist. I scheduled an appointment with a pulmonologist. A chest x-ray showed a large pleural effusion. I underwent a thoracentesis, which revealed malignant cells in the fluid. A CT also showed several masses in my right lung. I was sent to a thoracic surgeon who performed a pluerodisis and biopsy. The biopsy revealed stage 4 metastatic non-small cell lung cancer (NSCLC) that tested positive for the ALK mutation. After learning about the advancements in the treatment of NSCLC, especially in the ALK mutation, I chose to have treatment. My oncologist recommended an oral targeted therapy drug Xalkori (crizotinib). He explained that the drug was not a "cure" but was very effective in shrinking or slowing tumor growth, which it did with very few side effects. Shortly after being diagnosed and before beginning treatment with Xalkori I started researching everything I could find about lung cancer just trying to get a better understanding of my disease and find support from others who were dealing with lung cancer, it was during this research that I came upon the LUNGevity website. The name was the first thing that attracted me, I thought it was a neat play on the word longevity but as I began reading I soon realized there was a wealth of information and support there and that the organizaton was very actively involved with funding for research which really appealed to me because I feel it is through research that a cure will one day be found. I liked what I learned and decided to become a Social Media Ambassador so that I could help spread the word about lung cancer and clear up some misconceptions about the disease. I attended a Hope summit put on by Lungevity in Washington DC where I was even more impressed with the organization and the wonderful people involved with it. The LUNGevity website, Inspire, and the Alkies Worldwide Facebook group have been valuable resources of information and support for me. I am also a member of a cancer support group at my church. The biggest challenge to me is always living with this disease in the back of my mind. Every scan or blood test reminds me that there is a potential killer living in my body and I don't know what it is up to until I get my results. It is as much a mental disease as it is a physical one. To me, a survivor is a person who has overcome something bad and lived to tell about it. If I could give any advice or words of wisdom to a newly diagnosed patient, I would first tell them that lung cancer is no longer the automatic death sentence that it was in the past. I would tell them to demand gene mutation testing so they know what kinds of treatment options are available. I would also tell them that lung cancer treatment is a waiting game. It’s helpful to distract yourself with life and not to focus solely on this disease. Don't give lung cancer that much power over you! I hope that my efforts as a volunteer will help raise awareness and funds for lung cancer research. I want to make people aware that it only takes lungs to get lung cancer. Sam and her husband Bob in Jackson Hole, Wyoming, shortly after her diagnosis.