LaurenH

Hi, KC, Welcome to LCSC! I am happy that you've joined this community. Please feel free to start new topics and join ongoing conversations in the discussion boards. This is a great place to ask questions and share stories with others whose lives have been affected by lung cancer. If there is anything you need in terms of support or resources, please let us know! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Audrey, Welcome to LCSC! I am sorry to hear about your friend's diagnosis but I'm glad that you've joined this community.This is a great place to connect with patients, survivors, caregivers, and advocates who have also been affected by lung cancer. Feel free to start new threads or join ongoing conversations in the discussion boards. There are also member blogs and photo galleries and a calendar with upcoming lung cancer events all over the country. We look forward to getting to know you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Cindy, Welcome to LCSC! I am happy to hear that they found your lung cancer early. We'll be thinking of you tomorrow! Please update us when you can after your surgery and I'll be happy to tell you more about this online support community. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

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

What Not to Say to a Cancer Patient By: Jane E. Brody What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right. But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?” “Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive. A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing. A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University. Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.” However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort. “I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.” What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?” As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’” Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer. Many people now use online sites like caringbridge.org to keep people up to date on their health and needs or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help. Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.” Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.” In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.” When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.” Among the many suggested “don’ts” are these: • Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.” • Don’t talk about other patients with similar cancers, even if they fared well — no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it. • Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer. • Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?” • Don’t offer information about unproven treatments or referrals to doctors with questionable credentials. • Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck. • Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it. • Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity. • Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care. This story was published on nytimes.com on 11/28/16. Link: http://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html?smid=fb-share&_r=0

Are you a cancer patient or caregiver struggling with anxiety or depression? Are you worried that your fear, uncertainty or changes to your appearance or mobility will leave you depressed? Join the Cancer Support Community webinar, Frankly Speaking About Cancer: Coping with Anxiety and Depression on Wednesday, November 30 from 2:00pm-3:30pm ET. You will learn about ways to cope with the anxiety and depression that often accompany cancer. A psychologist and a social worker will both present information to help. The webinar features the following panelists: •Diane Robinson, PhD, UF Health Cancer Center – Orlando Health •Stacey Balkanski, LCSW, Program Director at Gilda’s Club South Florida •Shari Goldberg, Lung Cancer Survivor The webinar will be run through WebEx with a slide presentation. After the panelists’ presentations, participants will have the opportunity to ask questions through a chat feature during the Q&A session. Click here for more information or to register!

Hi, Wendy, I am so sorry to hear of your partner's diagnosis. I'm glad you've joined LCSC. I will share your post on our Facebook group and ask people to respond with advice and encouragement! Stay strong. We are here for you. Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Steph, Welcome to LCSC! I'm sorry to hear about your diagnosis, but I am happy that you've joined this community. First of all, congratulations on your success with quitting smoking! Stay strong and know that we are here to support you. I hope that you'll continue to explore the message boards and feel free to join threads on topics that interest you. This is a great place to ask questions and share stories and advice. We look forward to getting to know you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Doris, Welcome to LCSC! This site features online message boards where members can ask questions or talk about various topics. There are also member blogs, photo galleries, and a calendar of upcoming lung cancer awareness/fundraising events. LCSC is a great place to connect with other patients/survivors and share stories and advice. Is there anything in particular that you'd like to know more about? Are you looking for resources/information on a particular topic? We are here to help! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

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, Ray, Welcome to LCSC. I'm sorry to hear about your current situation. We're glad you've joined LCSC--this is a great site to connect with others on a similar journey. Like Donna said, please keep us posted on your treatment and feel free to ask questions or join in the conversations on other discussion threads. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Melody, Welcome to LCSC. I'm sorry to hear of your husband's diagnosis. Here is a link to a list of Practical Resources in LUNGevity's Caregiver Resource Center: https://www.lungevity.org/support-survivorship/support-we-provide/caregiver-resource-center/practical-resources-for-caregivers Please keep us posted on his scan results tomorrow. You'll be in our thoughts. Lauren -- Digital Community Manager LUNGevity Foundation

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)

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.

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

I love it, Susan! Very clever idea! Lauren -- Digital Community Manager LUNGevity Foundation

You're in our thoughts too, Monica! Stay positive!

Hello, Hammer, Welcome to LCSC. I am sorry to hear about your diagnosis, but I'm glad you've joined this online support community. We have members of all ages and stages of this disease, as well as caregivers and advocates, like me. I hope you'll make many meaningful connections with other members and you'll be able to share stories and advice. To start off, here's a link to the LUNGevity blog with a story about survivor Jim Morrison https://www.lungevity.org/support-survivorship/get-connected/blog/living-to-see-another-sunrise While you're on this site, please feel free to read and comment on other discussion threads. This is a great place to ask questions and get to know people who are on a similar journey or who have been through similar experiences. There are many stories of hope. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Susan, Thank you for being an incredible advocate! The theme of Lung Cancer Awareness Month is #changelc and we're sharing stories all month long of people like you. We want to hear from survivors/patients, caregivers, and advocates how and why they want to change lung cancer. We want to end the stigma by changing the face of lung cancer. We want to spread the word that anyone can get lung cancer and no one deserves lung cancer. In addition to advocacy, we'll be launching the new Lung Cancer Navigator mobile app, partnerships, and research funding opportunities that will transform how people live with lung cancer. And if you do get restrained, I promise to bail you out Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Lily, Welcome to LCSC. I'm sorry to hear of your father's diagnosis. I'm glad you've joined this community. It's a great place to connect with other caregivers and patients/survivors to hear their stories and advice firsthand. LUNGevity also has many resources to help with caregiver burnout and fatigue. There are also tip sheets and stories from other caregivers who've been on similar journeys. Here's the link https://www.lungevity.org/support-survivorship/caregiver-resource-center Please keep us posted on how you and your father are doing. Lauren -- Digital Community Manager LUNGevity Foundation

Hi, AMay, I'm glad that you posted and happy that you've already been able to connect with Lily and Tom. LCSC members are full of stories and advice from their own personal experience. It can be nice to connect with people who understand what you're going through. Please continue to explore the discussion forums and blogs and share updates as often as you feel comfortable. This is a great place to ask questions too, so I encourage you to fire away! Let us know how we can help! Lauren -- Digital Community Manager LUNGevity Foundation

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.