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  1. WELCOME NEW MEMBERS!

    1. INTRODUCE YOURSELF!

      Please introduce yourself here and then move on to the many other forums!

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  2. SURVIVOR STORIES

    1. SHARE YOUR LUNG CANCER STORY

      These are the inspirational and personal stories of the LUNGevity LCSC members.

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  3. DISCUSSION FORUMS

    1. GENERAL

      General discussion about all things lung cancer.

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    2. LC SURVIVORS

      A forum for anyone diagnosed with lung cancer, those in treatment and those who are not, to express their thoughts and issues from a patient's perspective.

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    3. NSCLC GROUP

      This is where thoughts or issues regarding NSCLC and sub-types of NSCLC can be found. Support is here for anyone facing this diagnosis.

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    4. SCLC GROUP

      This is where thoughts or issues regarding Small Cell Lung Cancer, extensive or limited stage can be found. Support is here for anyone facing this diagnosis.

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    5. LUNG CANCER MUTATIONS

      A forum to discuss anything related to lung cancer genetic testing and gene mutations.
      Share any news related to this topic here

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    6. IMMUNOTHERAPY

      Information, news and peer support

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    7. CAREGIVER RESOURCE CENTER

      FAMILY MEMBERS/CAREGIVERS: Air your feelings and get support and encouragement from others who have been co-survivors. Post and share resources for caregivers here

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    8. PALLIATIVE CARE

      Information about palliative care. Learn about palliative care for lung cancer survivorship and share resources here.

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  4. LUNG CANCER Q & A

    1. LUNG CANCER NAVIGATOR

      Do you have general questions about lung cancer? Post them here! We will reply with links and resources. This forum & site are NOT substitutes for professional medical advice. Please read all site disclaimers and consult your treating doctor about everything you read on the internet.

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    2. LUNG CANCER 101

      ALL expert blogs, podcasts webinars and expert events from LUNGevity and our experts will be posted here.

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  5. NEWS / ADVOCACY

    1. LUNG CANCER IN THE NEWS

      News posted here may not necessarily be endorsed or supported by LUNGevity in anyway, should NOT be taken as medical advice and are for informational purposes only.

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    2. CLINICAL TRIALS

      NEW TREATMENTS, TARGETED THERAPIES, RX info links &/or CLINICAL STUDY information may be posted here.

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    3. FOUNDATION NEWS

      News about LUNGevity, press releases, news about our volunteers, coordinators, event and initiatives.

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    4. ADVOCACY

      Advocate, raise awareness, participate in events and find volunteer opportunities in this forum.

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    5. CONFERENCES

      Conferences that are of interest to people impacted by lung cancer

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  6. LIVING WELL

    1. HEALTHY LIVING / RECIPES

      Nutritional information, exercise, diet and therapies. Links and newstories that may be beneficial to health and survival may be posted here. No advertisements.

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    2. HOPE

      Inspire us with your good news and hopeful articles!

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    3. JUST FOR FUN

      A forum for jokes, word games, and fun postings. "Air" your days events or concerns in the Daily "AIR".
      {Fun Found Here!}

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  7. SUPPORT / GROUPS

    1. SUPPORT RESOURCES

      Suggestions, links, recommendations and tools to help support you during the lung cancer journey

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    2. SUPPORT GROUPS

      Find local support groups and/or post your groups here.

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  8. GRIEF / RESOURCES

    1. GRIEF

      For anyone who has lost a loved one to LC. Post general updates, memorial notices and tributes here.

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  9. ABOUT THIS MESSAGE BOARD

    1. FEATURES AND SUPPORT

      You can create your own blog, chat, and more! Learn the basics and ask site support questions here.

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    2. TERMS OF USE

      Terms of use and disclaimers are posted here. They can also be found in the REGISTRATION AGREEMENT that every member accepts when registering to post on this message board.

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  • Recent Discussions

    • hi tom im having a central line put in october 11th and back on chemo the 13th so figures crossed do you mind me asking where your cancer reoccured. ya i feel there is a stigma that comes with lung cancer as i have tryed for local support groups with lung cancer suvivors havent found any yet surely they must be some, i will keep trying. Think my husband is showing fear on display at present and also my kids but we will get passed this, so glad your wife is so supportive a true angle without wings im sure my husband and kids will step up too just like last time we all had a rough couple of years my mom passed away last year from a stoke and my husband had a heart attack at the same time he had 5 stints put in i think were all very scared and in shock at present slowly im thinking bring the beast on so i can win this battle
    • Mary, Pemetrexed is a new formulation that I didn't receive.  I did however have more than my fair share of carboplatin, in combination with taxol and this combination therapy knocked down my tumors 3 times.  I do hope your adenocarcinoma qualifies for targeted therapy.  So let's see if we can help our your coping problem.  Here are some strategies with coping with infused chemotherapy that I discovered. 1. Remember, chemotherapy very often produces extended life.  Don't make my mistake and fail to take advantage of this extension.  You are choosing treatment and therefore life. Do something enjoyable with it. 2. A port is often helpful in avoiding assault by IV device.  During my second bout with chemo, my veins went into hiding.  Think about having one installed to reduce the drama of infusion. 3. The only good thing about side effects is they recur at nearly the same time after each infusion.  Chart the onset on a calendar to the hour.  My doc told me if I took prescribed side effect medicine shortly before the onset of side effects, they'd be less disruptive.  He was right. 4. If you have to take pre-infusion steroids in pill form and your are given infused steroids before chemo, there is this symptom we call 'roid rage.  Steroids caused two problems with me - hunger and sleeplessness the night after infusion.  So prepare.  My wife took me out infusion night for a wonderful dinner, and I settled in to a good book to pass the sleepless hours.   My family didn't want to speak about cancer either.  My father hardly spoke to me, but my wife stepped up to be my caregiver and guarding angel.  People don't know what to say to those diagnosed with cancer, especially lung cancer.  They are afraid of saying the wrong thing so they say nothing or they avoid interacting with you.  This is fear on display.  But you've found us and we know exactly how you feel and welcome you to this online forum.  You might also look for a cancer support group in your town or city.  They are often associated with treatment centers.  People in support groups know exactly how you feel. Stay the course. Tom
    • In addition to the resources listed at the bottom of this article, we recommend the LUNGevity Clinical Trial Finder. Cancer immunotherapy is moving fast. Here’s what you need to know. By Laurie McGinley | September 28 The idea of using the body's immune system to fight cancer has been around for a century, but only in the past half a dozen years have dramatic breakthroughs begun rocking the medical world. "That's when the tsunami came," says Drew Pardoll, director of the Bloomberg-Kimmel Institute for Cancer Immunology at Johns Hopkins University, and those advances are spawning hundreds of clinical trials nationwide, plus generating intense interest from patients, physicians and investors. Many cancer researchers compare the progress to medical milestones such as the discovery of penicillin or the development of chemotherapy. Over the next decade, the growth in the field will be "exponential," predicts Philip Greenberg, head of the immunology program at the Fred Hutchinson Cancer Research Center. "Making something better is enormously different than making something work that doesn't work." At the same time, researchers remember the past anti-cancer efforts that fizzled after initially showing promise. That explains the consensus sentiment at this week's international immunotherapy conference in New York: Turning science into cures will take years of perseverance against daunting hurdles. Here's a primer about new treatments and how they work: What is cancer immunotherapy? Immunotherapy is a significantly different approach from conventional treatments such as chemotherapy or radiation. The latter attack the malignancy itself, while immunotherapy aims to empower the immune system to kill it. Because of the immune system's unique power, says the nonprofit Cancer Research Institute, this therapy could prove a formidable weapon against many kinds of cancer and offer long-term protection with reduced side effects. Which immunotherapies are sparking excitement?  Two types of immunotherapy are drawing most of the interest: checkpoint inhibitors, which remove "brakes" from the immune system, allowing it to see and go after cancer; and CAR T-cell therapy, which involves a more customized attack. "Checkpoint" inhibitors are designed to block the ability of certain proteins to blunt or weaken the response of the immune system so it can't recognize and go after abnormal cells. In normal times, such checkpoint proteins keep the immune system from being too aggressive and damaging the body. But cancer sometimes hijacks them and uses them to suppress the immune system's response to disease. [Immunotherapy shows promise in increasing numbers of cancers] The Food and Drug Administration has cleared four checkpoint inhibitors for adults: Yervoy, also known as ipilimumab; Keytruda, or pembrolizumab; Opdivo, or nivolumab, and Tecentriq, or atezolizumab. The drugs are approved for malignancies including melanoma and Hodgkin lymphoma, as well as lung, kidney and bladder cancer. The treatments also are being tested in a wide range of other cancers. Former president Jimmy Carter was treated with Keytruda, surgery and radiation for advanced melanoma last year. He announced in December that all signs of his cancer had disappeared. In CAR T-cell therapy, T cells — a key part of the immune system — are removed from a patient, genetically modified in the lab to target a specific cancer and infused back into the person. This treatment, available only in clinical trials, is being tested mainly for leukemia and lymphoma. The Food and Drug Administration is likely to approve the first CAR T-cell treatment next year or in 2018. Of these two immunotherapy approaches, most research and investor interest is focused on checkpoint inhibitors. That's because they are off-the-shelf treatments that are much easier to administer than customized T-cell therapy, said Crystal Mackall, a former National Cancer Institute researcher who's now leading immunotherapy trials for Stanford University School of Medicine. What are some of the main challenges in immunotherapy? Among the biggest challenges are increasing the response rate among patients and turning initial responses into long-lasting remissions. CAR T-cell therapy often produces a high remission rate in blood-disorder trials, but a significant percentage of patients relapse. Checkpoint inhibitors induce responses — signaling a tumor has been shrunk or stabilized — in an average of just about 20 percent of patients, said oncologist Elizabeth Jaffee, the deputy director of the Sidney Kimmel Comprehensive Cancer Center at Hopkins. Researchers need to understand why only some cases and some cancers respond. Why, for example, the treatment benefits melanoma but not pancreatic cancer. They think the key to improving effectiveness will be coming up with combination treatments, as happened with AIDS. Jaffee points out that the tide was turned against that disease only after researchers figured out how to use a "cocktail" of medications to keep people with HIV from developing AIDS. Nationwide, combination trials are testing the simultaneous use of two or more checkpoint inhibitors, a checkpoint inhibitor with a CAR T-cell therapy or an immunotherapy plus radiation and chemotherapy. But combining these can increase safety risks. Jill O'Donnell-Tormey, chief executive of the Cancer Research Institute, said researchers also are trying to understand tumors' "micro-environments," which contain cells and other factors that appear to sometimes suppress the immune system's response to cancer. The institute, along with the American Association for Cancer Research and two European groups, sponsored the three-day conference in New York. What are immunotherapy's downsides? By revving up the immune system, immunotherapy can cause sometimes serious damage to healthy tissue and organs. Researchers are working on ways to limit or even reverse the potential toxicity, but much work needs to be done. CAR T-cell therapy poses two types of safety risks. Almost all patients get sick with flu-like symptoms, including high fever and pain, a week or so after the treatment; some end up in intensive care. The treatment also can cause brain swelling that can be fatal. [How cancer thwarts immunotherapy] Yet standard treatments have major side effects as well. Chemotherapy and radiation, when used for children with leukemia, can cause long-term problems such as secondary cancers, infertility and heart damage. In many ways, researchers say, immunotherapy is less toxic over the long term and might eventually be a good first-line alternative to chemo and radiation. Immunotherapy can carry higher price tags. For example, Merck's checkpoint inhibitor, Keytruda, costs about $150,000 a year. Once CAR T-cell therapies are approved by the Food and Drug Administration, they may cost hundreds of thousands of dollars a year, according to some analysts. If the treatments are used as directed by the agency, chances are good that insurance will pay for at least some of that. Does immunotherapy work for children? Immunotherapy in kids is a mixed picture. Checkpoint inhibitors are only now being tested extensively in children, so it will take time to see how well they work. But very early-stage studies suggest that they may not be as effective as in adults. One theory holds that these drugs work better in cancers with many mutations — and pediatric cancers tend to have many fewer mutations. CAR T-cell treatment, on the other hand, is being widely tested in children and has shown impressive effectiveness against acute lymphoblastic leukemia, the most common childhood leukemia. How do I find immunotherapy treatments? Talk first to your doctor, who should be able to help you find appropriate medication or clinical trials for unapproved treatment. Trials sponsored by the National Cancer Institute can be found at trials.cancer.gov. Studies also are listed on the website ClinicalTrials.gov --though that doesn't signify government endorsement or approval. Another resource is the Cancer Research Institute's Clinical Trial Finder.  This story was published on washingtonpost.com on 9/28/16. Link: https://www.washingtonpost.com/news/to-your-health/wp/2016/09/28/cancer-immunotherapy-is-moving-fast-heres-what-you-need-to-know-now/