LaurenH

Click here to listen to the audio from the webinar and read the follow-up blog by Dr. Upal Basu Roy, LUNGevity's Director of Science Communications.

Hi Caroline, Welcome to LCSC! We look forward to getting to know you. I am sorry for your diagnosis, but I hope that you are encouraged by the people you meet on this site. Many are on a similar path. If you share more details of your diagnosis and treatment, we can also help you find online resources to help you. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Peter! Welcome to LCSC. We're looking forward to hearing your story. Are you looking for information about immunotherapy for SCLC? Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Yovana! I'm glad you've found LCSC and happy to hear that your test results came back negative. I hope that you make many meaningful connections on this site. It looks like you've already met two of our awesome members, Donna and Tom. Just to give you a quick rundown of the features on LCSC, in addition to the discussion boards, there are also user blogs, photo galleries, and a calendar of upcoming LUNGevity and lung cancer related events. Please feel free to explore and let us know if you have any questions! Regards, Lauren -- Digital Community Manager LUNGevity Foundation

Immunotherapy Virtual Roundtable Update and Discussion Join us for a webinar on Aug 17, 2016 at 7:00 PM EDT. Register now! https://attendee.gotowebinar.com/register/1131249407449233668 Virtual Roundtable Update and Discussion on Immunotherapy: An interactive discussion about the potential of lung cancer immunotherapy, and the significance of recent clinical trial results with lung cancer expert, Dr. Julie Brahmer, MD. This is a free live interactive webinar hosted by LUNGevity Foundation. Registration is required. After registering, you will receive a confirmation email containing information about joining the webinar. View System Requirements

The Lung Cancer Support Community (LCSC) is the largest online lung cancer support network with over 11,000 members. LCSC members are people living with lung cancer, caregivers, medical and health professionals, and advocates, who are unified in our common goal to improve survivorship. Users can safely share information on LCSC. Member-generated usernames help keep information private and for those who wish, remain anonymous. Forum moderators help to maintain the integrity of the site, assisting new members, and participating in discussions to offer peer to peer support. Anyone may read the forums, but you must register and be logged in to post. Overview of Features Forums and Discussion Boards There are 27 forums with topics ranging from Survivor Stories to News and Advocacy to Living Well with lung cancer. Each forum has multiple discussion boards where you can post questions and thoughts that you’d like to share with the community. Or you can weigh in on discussions that other members have posted about topics that are relevant and interesting to you. If you’ve just joined LCSC, introduce yourself in the Welcome New Members forum. Tell us a bit about yourself and your motivation for joining the community. If you are someone living with cancer, tell us as much as you’re comfortable sharing about your diagnosis and prognosis. Many of the other survivors who are members have been in similar situations. While no two journeys are the same, it can be very helpful to connect with someone who has been on a similar path. And you’ll find that an online support system can be very empowering and uplifting! Blogs In this section, users can create personal blogs to tell personal stories, share news, and give commentary on current lung cancer topics. If you enjoy a particular blog, you can follow it by clicking the Follow button in the top right corner of the page. Photo Galleries In this section, users can create personal or shared photo galleries. Let people know a bit more about your life by sharing photos of the people, places, and things that are important to you. Chat If you need someone to talk to or want to make a new connection, click on the Chat tab on the top menu bar. On the right hand side of the page, you’ll see a list of users who are currently logged in and ready to chat! Calendar The Calendar section shows which members are celebrating birthdays as well as upcoming lung cancer events. Whether you’re looking for a support, advocacy, or fundraising event, you’ll find all of the important information here. We are glad that you’ve joined LCSC and look forward to getting to know you!

Good morning, Acejj75, I am very sorry to hear about your mother's diagnosis. She is fortunate to have you as a daughter and experienced caregiver. I am glad to see that you've talked to Tom. He is a great source of information and he's a very compassionate person. He made some excellent points about focusing on how you and your mother want to spend the time you have together. In addition to LUNGevity's SCLC resources, I wanted to share the link to LUNGevity's Caregiver Resource Center with you: https://www.lungevity.org/support-survivorship/caregiver-resource-center. On this site, you'll find ways to find tips about working with your mom's healthcare team, finding emotional support, and other practical resources. If you're comfortable, please continue to post updates and feel free to ask questions in this forum or any of the other topic-specific forums. There is a small cell lung cancer forum, where you may be able to connect with other survivors and caregivers who have been on a similar path as you and your mother. We are here for you. Lauren -- Digital Community Manager LUNGevity Foundation

Happy Birthday, Donna! I hope that you enjoy celebrating another year! Thank you for all you do for LCSC. Your stories and contributions have made an impact on many people. Lauren -- Lauren Humphries Digital Community Manager LUNGevity Foundation

Hello, Baker, Welcome to LCSC! I am sorry to hear about your diagnosis.Thank you for sharing your story.While no two journeys with cancer are the same, I hope that you connect with someone on LCSC who has similar experiences. If you'd like, I will do some research and see if we can connect you with anyone who has been on the same treatments. In the meantime, please keep us posted! There are many of us on this site who will be supporting you and following your journey. Please feel free to continue posting on the discussion boards and reading the blogs. If you're interested, you can start your own blog on this site as well. Know that we are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Dick, Thanks for posting an update. Many of us are following you and you're in our hearts and on our minds. It made me smile to read that you've already found the silver lining regarding the new treatment plan. Immunotherapy has shown some of the most promising advances in cancer research in recent years and it won't make you as sick as chemo. Here is LUNGevity's patient education booklet on immunotherapy https://www.lungevity.org/sites/default/files/file-uploads/immunotherapy-brochure-033115.pdf if you'd like to do some reading about how immunotherapy works. Please continue to keep us posted and feel free to ask questions and share concerns on this site. We're here for you! Lauren -- Digital Community Manager LUNGevity Foundation

The demands of lung cancer caregiving can be overwhelming, especially if you feel you have little control over the situation or you have little or no help. Let's chat about it! Have you ever felt helpless and powerless in your role as caregiver? It's important to watch for warning signs and take action right away to lighten your load and avoid serious burnout. TOPIC: Lung Cancer Caregiver Stress, Burnout, and Depression We will chat about signs and symptoms of caregiver stress and burnout. How can you recognize the signs of caregiver stress and burnout? What resources are available to help ease the burdens on lung cancer caregivers? Ways that families and friends can help their loved ones and share experiences and tips that may help others. DETAILS: Date: Wednesday, August 3, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. TWITTER CHAT TIPS: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCChat. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!

Hello, Dick! I am sorry to hear about your diagnosis, but I'm happy that you found LCSC. On this site, you'll read stories from many survivors who have been down a similar road and have similar experiences. There are also many people like me, who aren't living with lung cancer, but who advocate on behalf of our loved ones who are fighting lung cancer. I hope that you can make some great connections. Please keep us posted on your scan results! Sending lots of positive thoughts your way. We are here for you. Lauren -- Digital Community Manager LUNGevity Foundation

Hi ryansmith, I am very sorry to hear of your wife's diagnosis. It is very difficult to find out that someone you love is fighting cancer. One of the best ways you can help support her is to learn about adenocarcinoma. LUNGevity has several resources to help you and your wife navigate her diagnosis. The Lung Cancer 101 section of LUNGevity's website has a section dedicated to adenocarcinoma: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer/lung-adenocarcinoma Here is a link to download LUNGevity's educational booklet on adenocarinoma: https://www.lungevity.org/sites/default/files/file-uploads/adeno-brochure-020516.pdf And this is a link to LUNGevity's Caregiver Resource Center, which provides resources specifically for people who are caring for a loved one fighting lung cancer: https://www.lungevity.org/support-survivorship/caregiver-resource-center Please keep us posted on your wife's progress and let us know if you have questions. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi Apoorvamaniktala, I am sorry to hear about your father's diagnosis. My beloved uncle was diagnosed with Stage IV lung cancer with brain metastasis in 2011. While nothing can prepare a man and his family for a lung cancer diagnosis, he faced his with determination, hope, and strong support from family and friends. Early on, my uncle underwent several rounds of radiation and had a few procedures, including stereotactic radiosurgery, to remove the tumors and lesions in his brain. They were able to successfully remove all 8 tumors. They discovered that he has the ALK mutation, and he went on Xalkori (a targeted therapy drug) for over three years with very positive results. He recently switched to Alcensa, a stronger drug, more as a precautionary measure than an absolutely necessary one. This September, we will celebrate five years of survivorship. In the past five years, he has seen his youngest son graduate from high school and college and his oldest son get married and have two beautiful children. His only daughter is welcoming her first child in just a few weeks. It is very difficult to watch someone you love fight cancer. While we wish we could take his pain and undergo treatment in his place, we know that he has to do that on his own. But my family has rallied around him and given him the love and support he needs during difficult times. He is grateful for opportunities to connect with other survivors and I am grateful to connect with other people whose lives have been affected by cancer. Though no one's stories are exactly the same, it is inspiring to talk to people who are on a similar journey facing similar obstacles. I hope that you find invaluable support and make many meaningful connections through LCSC. Please keep us posted on your father's progress. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Good morning, Donna, We're happy that the upgrades are complete too! We hope everyone likes the new design. There have been so many crazy weather patterns and events this year. You bring up a good point about taking extra precautions in the hot weather. The Red Cross has some great tips for staying safe in extreme heat. Here is the link: http://www.redcross.org/news/article/Red-Cross-How-to-Stay-Safe-in-Hot-Weather Stay cool! Lauren -- Digital Community Manager LUNGevity Foundation

Hi Isaut, I'm happy to hear that things are getting better for you and your family. It's great that you're being proactive about palliative care. If and when the time comes that it becomes necessary, it sounds like you'll be more prepared. And I'm glad that you've been able to talk with someone about how all of this is affecting you. Stay strong and keep us posted! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Marc, That's great news!! My uncle was diagnosed with ALK and he took Xalkori (crizotinib) for three years with very positive results. He experienced minimal side effects (his ankles swelled up quite a bit, but that didn't stop him from playing golf, going to the beach, or any of his other favorite activities). He only recently switched to Alecensa (alectinib) and is still doing very well. Here is a link to LUNGevity's guide to managing side effects: https://www.lungevity.org/support-survivorship/survivor-resource-center/living-well-with-lung-cancer/managing-treatment-side Please keep us posted! Lauren -- Digital Community Manager LUNGevity Foundation

That's wonderful! I'm very happy to hear your good news, Susan!

Hi Ruthie, Thank you for sharing your story--your post brought a big smile to my face! I'm happy to hear that LCSC has been such a positive part of your life. I am sorry that it has been quite a roller coaster for you, but you seem like an incredibly strong person and role model to your daughter. Stay in touch! Lauren -- Digital Community Manager LUNGevity Foundation

Hi Randii, I'm very sorry to hear about your loved one's diagnosis. From the way you talk about him, it is clear that he will be receiving unconditional love and support from you. While medicine is important, love and support can also make a tremendous impact. As Marc mentioned above, faith and hope and a positive attitude can also make a world of difference. You've come to the right place to connect with other survivors and caregivers. My family went through a similar situation when my uncle (who is also my godfather) was diagnosed with Stage IV ALK in September 2011. We were stunned and didn't see it coming. The best thing for us was finding LUNGevity Foundation, gaining access to invaluable resources so that we could learn what we dealing with, and connecting with others who were on a similar journey. My uncle is still with us, and he's been taking targeted therapy drugs to fight his specific mutation for over three years. Here is a list of Caregiving Tips from LUNGevity's Caregiver Resource Center: A lung cancer diagnosis is a shock to everyone involved, and it takes time to adjust. Keep that in mind as you and your loved one settle into your new relationship. Learn as much as you can about your loved one's diagnosis and treatment options. The more you know, the more effective you'll be. See Lung Cancer 101 to get started—but take it slowly. You don't need to know everything at once. Try to keep a positive attitude and a sense of humor—it's beneficial to both you and the person you're caring for. Plan to spend time together outside of the illness, like going to a movie or spending time outdoors; it will remind both of you that you have a relationship separate from lung cancer. Have hope for the future; don't be afraid to talk about future plans. Participate actively in clinic visits. Take notes and ask questions. See Asking the Right Questions for printable lists you can bring with you to doctor visits. Encourage your loved one to engage in his or her usual activities as much as possible. Ask other people to help. Make up a list of activities that others can sign up for. You may find that friends and family members are eager to pitch in once you tell them specifically what you need. Seek out other lung cancer caregivers. It helps to talk to people who know first-hand what you're going through. LUNGevity's LifeLine Program can match you with a volunteer support partner. Know your limits and be realistic about how much of your time and energy you can give. Please know that we are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Join us for the next Caregiver Twitter Chat: Topic: How Can Lung Cancer Caregivers Communicate with the Healthcare Team? Date: Wednesday July 6, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. Twitter Chat tips: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCChat. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!

Hi Susan, I am sorry for the delay in response. I am happy to hear that you finished chemo last month! I hope that you get great scans on July 1. Please keep us posted on the results! I hope that you've been able to relax and do some activities that you love while you're waiting for your next scan. What are some activities that you enjoy? Regards, Lauren --

For the first time, cancer researchers are offering patients with early stage lung cancer either surgery or stereotactic ablative radiotherapy (SABR) and comparing the results in a phase III clinical study called the Stablemates Trial. SABR is a specialized form of radiation that has evolved in recent years to treat patients with just a few sessions – in this case just three treatments spread over eight days or less – using advanced imaging to deliver a higher dose. An early study has shown that SABR could be as effective as surgery among patients who did not qualify for surgery. The primary objective of this study is to test the hypothesis that the 3-year overall survival in high risk operable patients with Stage I NSCLC is greater in patient who undergo SAbR as compared to standard sublobar resection (SR). The new study now offers the same treatment to patients who are eligible for surgery but are at high risk for complications. To learn more and see a list of participating institutions, visit the trial web site.

Hi Stevo, I am sorry for your diagnosis, but I am happy that you found LCSC. As you can see from the responses above, this is a very supportive, close-knit community of survivors and caregivers who have been on similar journeys. I hope that you will be able to make many meaningful connections with this group. Please keep us posted with your treatments and progress. Feel free to ask questions and let us know what you need. Sincerely, Lauren P.S. Congratulations on graduating and on getting your dream job! I know it may seem like the timing is unfortunate, but that doesn't take away from the fact that you still accomplished those goals. -- Lauren Humphries Digital Communities Manager LUNGevity Foundation lhumphries@lungevity.org

Good morning Marc, My name is Lauren and I am the Digital Communities Manager for LUNGevity. Your story was the first thing I read this morning and it moved me to tears, but also filled me with hope. I am so sorry for your diagnosis. Nothing can truly prepare a man and his family for a lung cancer diagnosis, but you are already handling it incredibly well by taking an active role with your medical team and seeking out a support network. You've come to the right place to find support and to connect with others affected by lung cancer. On the message boards, you'll hear from other survivors who may have gone through similar journeys. Once people read your story, I'm sure you will get several more encouraging responses. Here is a link to LUNGevity's Survivor Resource Center where you will find information and resources specifically created for someone facing a lung cancer diagnosis: https://www.lungevity.org/support-survivorship/survivor-resource-center Please keep us posted and feel free to contact me if you have any questions about LUNGevity Support & Survivorship programs. My email is lhumphries@lungevity.org. In the same way that you are here for us, know that we are all here for you! Sincerely, Lauren P.S. As a fellow runner, I have to say congrats on the marathon!! That is a huge feat and you should be very proud!