LaurenH
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Posts posted by LaurenH
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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
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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
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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
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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
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Digital Community Manager
LUNGevity Foundation -
Hi, PeggieH,
Welcome to LCSC. We are glad that you've joined this online support community. This is a great place to connect with other patients/survivors and get to know caregivers and advocates whose lives have also been affected by lung cancer. Please feel free to join some of the conversations in the discussion threads or ask questions. There are many very knowledgeable members on this site who have a lot of experience. I am also happy to help you find additional resources and support. Feel free to post on this thread or message me directly with any questions/concerns about how to use this forum!
With gratitude,
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Sydney,
Welcome to LCSC! Thank you for sharing your story. You seem like an incredibly determined, knowledgeable, and positive person. I'm happy to see that you've jumped right into the discussion forums.
I work for LUNGevity as the Digital Community Manager and as an advocate for my uncle who has Stage IV ALK (he was diagnosed in September 2011 and has had very positive results with both crizotinib and alectinib). LUNGevity has an ALK group on Facebook where you can connect with other people who have the ALK mutation. I will also reach out to some of our members who have ALK and ask them to respond to your questions in this thread.
Since you're in the DC area, if you're interested, we have a national lung cancer survivorship conference coming up at the end of April called HOPE Summit. Several LCSC members are HOPE Summit alumni and many will be joining us this year. I am happy to provide you with more information. Please feel free to message me with additional questions about HOPE Summit or LUNGevity's educational or support resources.
With gratitude,
Lauren
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Digital Community Manager
LUNGevity Foundation -
Thank you, Mally! Please let us know what you think of the app after you've used it for a little while. We want to make sure this resource is as helpful as possible for patients who are navigating lung cancer.
Lauren
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Digital Community Manager
LUNGevity Foundation -
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We have several possible media opportunities for individuals who are using the Lung Cancer Navigator App to help manage their/their loved one's lung cancer diagnosis. If you are interested in sharing your story and helping to raise awareness for this resource, please respond to this thread and we will be in touch with more information.
If you would like to learn more about the Lung Cancer Navigator App and how to download it for free from the Apple or Google Play stores, please visit LUNGevity's website.
Thank you!
Lauren
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Digital Community Manager
LUNGevity Foundation -
We all know that when someone receives a lung cancer diagnosis, it can be overwhelming. LUNGevity designed the Lung Cancer Navigator app is to empower patients and make understanding and living with lung cancer less daunting and considerably more manageable.
The Lung Cancer Navigator mobile app puts your entire support network in the palm of your hand. It helps you understand your diagnosis and provides tools and forums for asking questions, detailing symptoms, and managing medications. The app is a great way to communicate with your healthcare providers and to request support from friends and family.
Follow these easy steps to get started!
- WATCH the introductory video for a quick demonstration of how the Lung Cancer Navigator works.
- DOWNLOAD the free LUNGevity Lung Cancer Navigator from Google Play or the Apple App Store.
- VIEW these step-by-step instructions to set up your app.
- TELL US what you think! We’re eager to know what you find most beneficial and how we can make the Lung Cancer Navigator even more helpful in the future.
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Hello, adv_sports!
Welcome to LCSC. We are glad that you found us. I am sorry to hear about your mom's current health issues. This is a great site to connect with others who have gone through similar situations. I hope you get some answers from the biopsy/molecular test results on Thursday. If you're comfortable sharing the results, some of our members may be able to offer advice and answer some of your questions. It sounds like your mother is very fortunate to have you and your siblings to take care of her. Please feel free to ask questions and join in any of the conversations on this discussion board. If you need information/resources on a specific topic, please let me know and I'll be happy to help.
With gratitude,
Lauren
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Digital Community Manger
LUNGevity Foundation -
Hi, Patrick,
First, I want to say welcome to LCSC - we're glad you found us! This forum is a great place to connect and learn from others' experiences.
I am sorry that your family is going through a difficult situation. It's great that you're being proactive by seeking information and support to make sure that you're prepared to make decisions as you navigate your mother's diagnosis--whatever that may be. Like Tom said, the more detailed information you have, the easier it will be to make those types of decisions. I hope you get some answers from the biopsy and then if you're comfortable sharing the results, some of our members may be able to give you advice and recommendations based on their experience.
Please feel free to ask questions or jump in to any ongoing conversations in the discussion boards. If you'd like more information about a specific topic, please let me know and I'll be happy to help you find resources.
We are here for you.
Lauren
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Digital Community Manger
LUNGevity Foundation -
Good morning, Paula,
I am so happy that you've "found new hope!" That is exactly why this forum exists: to help people living with lung cancer feel connected, to learn from each other's experiences, to find resources/support, and to give each other hope! I'm glad that you have a positive attitude and that you're being honest with people about your fears/concerns. It's important to acknowledge them, like Katie said, so that you can go on living your life and focus on other things! I think it's great that your daughter is there to help, and I hope that you enjoy more time with her and your grandson.
If you have questions or you'd like more information/resources or additional support, let us know. We're in this together.
With gratitude,
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Susan,
I know those weren't the results we were hoping for BUT this is just a setback. Keep us posted about your next scan. You have a wonderful "live life to the fullest" mentality, so keep that going! We're here when you need to talk!
Lauren
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Digital Community Manager
LUNGevity Foundation -
Susan, you must be so excited for your upcoming adventures and I'm so happy that you can share in your niece's special day! I remember your first post in LCSC and I've loved watching you become an integral part of this community! Thank you for supporting and encouraging so many of our members. Your posts truly make a difference. I am sending all of the love and positive vibes to you and Tom for your upcoming scans.
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Kim,
Welcome to LCSC. I am sorry for what you and your boyfriend are going through, but you have come to a great place for information and support. I hope that you will connect with many of our members in this online community who are patients/survivors, caregivers, and advocates. Tom has already provided you with some great advice. You will find a lot of information on LUNGevity's website. If you can share more details about your boyfriend's diagnosis, we may be able to answer some of your questions. I am also happy to help you find educational and support resources. You are not alone!
Lauren
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Digital Community Manager
LUNGevity Foundation -
Hi, Jg,
I apologize that you haven't heard from anyone yet. I will share a link to your post in the NSCLC thread on the Lung Cancer Support Community Facebook page and encourage anyone with experience on Opdivo to respond.
Lauren
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Digital Community Manager
LUNGevity Foundation -
Cancer advocate to address largest lung cancer survivor conference
FOR IMMEDIATE RELEASE
Media Contact:
Linda Wenger
lwenger@LUNGevity.org
(973) 449-3214Country music star and cancer survivor Wade Hayes
WASHINGTON, DC (February 16, 2017) – LUNGevity Foundation is excited to announce that country music star Wade Hayes will be sharing his cancer journey with lung cancer survivors and their caregivers at the 7th Annual National HOPE Summit on April 29 in Washington, DC. As opening keynote speaker, he will relate his experiences before the largest convening of lung cancer survivors in the country.
The annual LUNGevity National HOPE Summit is the largest lung cancer survivorship conference where attendees come from across the country and around the world to learn about living well with lung cancer. The three-day event features inspirational speakers, medical expert forums, lung cancer survivor-specific sessions, advocacy sessions and opportunities for lung cancer survivors at all points in their treatment to connect with each other. Hayes will kick off the two-day conference and set the tone of hope for all in attendance.
Hayes was diagnosed with stage IV colon cancer in the fall of 2011. After extensive surgery and debilitating chemotherapy, Hayes battled his way back to health only to have the cancer return in the fall of 2012. The country singer fought back and channeled his experience into his latest album, “Go Live Your Life.” Today, Hayes is cancer free, a dedicated advocate for people living with cancer, and an active supporter of the Colon Cancer Alliance and other cancer nonprofits. He has spoken and performed at numerous events across the country to raise funds to fight cancer and inspire others.
“We couldn’t be more thrilled to have Wade Hayes join us for this one-of-a-kind celebration of lung cancer survivorship,” said Katie Brown, VP Support and Survivorship. “His commitment to advocating on behalf of others with cancer makes Wade an inspiration for all of us.”
The National HOPE Summit is a 2½ day conference in Washington, DC, that is open to lung cancer patients, survivors, and caregivers. Learn more about this unique event and register atwww.LUNGevity.org/hopesummit.
Read the full press release here.
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Hi, Pattie-cat,
Welcome to LCSC! I am glad that you've joined this community. There are thousands of people to talk to who can help answer your questions and share their lung cancer experiences. I hope you realize quickly that you are not alone and that we are here for you. Please feel free to explore the discussion boards and join in any conversations that resonate with you. Or if you have questions, feel free to start a new topic.
My uncle was diagnosed with Stage IV lung cancer in 2011, which inspired me to become involved with LUNGevity. Members on this site are mostly patients/survivors, but you will also meet caregivers, and advocates like me. If you share a bit more information about your diagnosis, we can try to help you understand/navigate and answer some of your questions.
Lauren
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Digital Community Manager
LUNGevity Foundation -
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You have a whole team of LCSC warriors here to support you, Meloni! Tom gives great advice and many of our other moderators and members are also here to listen and to share their experiences with you. I am more than happy to help you find resources or support through LUNGevity. Let us know what we can do to help!
Lauren
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Digital Community Manager
LUNGevity Foundation -
LUNGevity Announces Funding Opportunity for First-Ever Lung Cancer Early Detection and Interception Dream Team
Call for ideas for SU2C-LUNGevity-American Lung Association collaboration
FOR IMMEDIATE RELEASE
Media Contact:
Linda Wenger
lwenger@lungevity.org
(973) 449-3214WASHINGTON, DC (February 6, 2017) – Building on the Foundation’s more than seven years of strategic investment in early detection research, LUNGevity Foundation, in collaboration with Stand Up To Cancer (SU2C) and the American Lung Association (through its LUNG FORCE initiative), is pleased to announce that the American Association for Cancer Research (AACR), SU2C’s scientific partner, has issued a Call for Ideas for research proposals that focus on lung cancer early detection and interception: catching precancerous cells and blocking them from turning into cancer cells. The interdisciplinary and multi-institutional SU2C-LUNGevity-American Lung Association Lung Cancer Interception Dream Team will be the first of its kind, with up to $7 million in funding support.
As Dr. Pierre Massion, Professor of Medicine and Cancer Biology at Vanderbilt University, points out, "We understand the pathogenesis of lung cancer a lot better now. People have come to recognize that detecting the disease early and preventing it will require efforts between multiple disciplines to get there. The Lung Cancer Interception Dream Team is a huge step toward this goal." Dr. Massion is a member of LUNGevity’s distinguished Scientific Advisory Board and co-chairs the SU2C-LUNGevity-American Lung Association Joint Scientific Advisory Committee (JSAC).
LUNGevity is the only lung cancer nonprofit with a programmatic focus on early detection, 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%. This project expands on LUNGevity’s investment in early detection research with the goal of developing an effective, widely available, noninvasive way of finding lung cancer early in all populations.
Prioritized areas of interest for this project include research that accurately categorizes premalignant conditions according to risk of progression and that elucidates the underlying alterations that increase that risk; identification of new targets for developing therapeutic interventions of these early lesions; potential surrogate endpoints for clinical trials and regulatory approval; new tools for early detection and monitoring progression; the role of inflammation and immunosuppression in progression; or research targeted at generating sufficient knowledge to justify a clinical intervention to test novel hypotheses.
Applicants for the grants are expected to show how their proposed projects will have positive benefit for patients in the near future, achieved through investigation by a multidisciplinary, multi-institutional, synergistic Dream Team of expert investigators. Priority will be given to applications that are characterized by a diversity of team members, including those from fields outside the traditional realms of biomedical research (e.g., physics, mathematics, engineering, health policy, and communications). Specific aims of the project may include basic research, translational studies, and population studies, but the overall proposal must have a strong clinical research component.
Program details can be found at https://proposalcentral.altum.com. Letters of Intent are due by March 8, 2017.
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Just diagnosed :(
in INTRODUCE YOURSELF!
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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
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Digital Community Manager
LUNGevity Foundation