CindyA

As you know, LUNGevity is very committed to ‪#‎lung‬ cancer research and support of Survivors. Please take this short survey. If you could also share it with others, we would really appreciate it. Thanks. ‪#‎LCSM‬ ‪#‎Survivor‬ http://dimensions.edgeresearch.com/e.as ... =C&ps1=FBX

Confused and then Infused February 18th, 2014 - by Kenneth Lourie Since March 6, 2009, nearly five years now, save for nine months when I was taking an oral chemotherapy medication at home, every three weeks I have been infused with some sort of chemotherapy drug. In that time, I have certainly become familiar and fairly well-known to the various staff at The Infusion Center. What follows is the most recent exchange with the receptionist in Oncology, as best as I can recall it. Receptionist: “Hello, Mr. Lourie. How are you”? Me: “Lovely. Happy to be here.” Receptionist: “That’s nice.” Me: “Actually, I’m not happy to be here. I mean I’d rather not be here. But since I’m here, it’s better that I’m here than not here, as in unable to get here because I’m not here anymore.” Receptionist: “I understand.” Me: “Really? Because I’m not sure I understand. I know what I’m thinking, but…What I mean to say is that I don’t want to be coming here to the Infusion Center, because that means I’m being treated for cancer. But if I do have cancer, I guess I’m happy to be still alive, in order to be able to get here for treatment.” Receptionist: “I understand.” Me: “I think I’m confused. I don’t want to be coming here because I have cancer. I’d rather not be coming here at all. But since I have cancer, I suppose I’m glad I’m able to still get here. I think I’m going around in circles.” Receptionist: “No, you’re fine. I understand completely.” Me: “Really. ‘Cause I’m not sure I do. It seems like I’m talking to myself, repeating myself. I’m a writer and often I use double-entendres in my column, which seems sort of what I’m doing here. Although I’m not intending it. I was more realizing/thinking aloud as to why I was here, whether I wanted to be here and the reasons why I was fortunate – so to speak, to even still be here and/or how unfortunate I was to be here being treated for terminal lung cancer – as opposed to being healthy and not needing to be here. I feel as if I’m rambling here. Am I making any sense?” Receptionist: “Not to worry. (Smiling, laughing.) I do understand exactly what you’re saying.” Me: “I’m not sure I do. Maybe I should just stop talking and sit down and wait for Ron (my oncology nurse) to come and get me.” Receptionist: “Ron’s running late. He’s stuck in traffic. He’ll be here soon.” Me (to myself): Great (chagrined.) I suppose I should probably stop pacing then and just sit down and try to relax. I’m here. I’m checked in. Besides, I have to be ready for my blood pressure check. If my vitals (and/or lab results, appearance, etc.) are not normal, protocols will prevent any infusion today (which has happened to me twice; very disappointing, especially considering that you think your life depends on receiving the treatment that day). If the patient doesn’t pass muster, however, the oncology nurse has no choice: there will be, to invoke the “Soup Nazi” from “Seinfeld”: “No chemo for you.” Fortunately, for this infusion, I have once again managed to “Pass the audition,” as John Lennon so famously joked at the end of the live roof-top version of The Beatles’ song “Get Back” at the end of the “Let It Be” album. Life goes on though – for me, thank God!, despite my confusion. Thanks to the staff for continuing to take me in stride. What’s your treatment day like? _____________________________________________________________________________ “This column is my life as one of the fortunate few; a lung cancer anomaly: a stage IV lung cancer patient who has outlived his doctor’s original prognosis; and I’m glad to share it. It seems to help me cope writing about it. Perhaps it will help you relate reading about it.” Mr. Lourie’s columns can be found at www.connectionnewspapers.com. (key word, Lourie) Read Kenneth Lourie’s 1st LUNGevity blog post & bio.

Hi Dana, Welcome to this message board. This groups is full of HOPE, inspiration and care. It's like that famous show that was on not long ago where everyone knows you by name. Except 110% better. Please keep us updated in how you & your mom are doing. You may have already seen this but we have an "Ask the Experts" tab on our web page. You can research questions other people have asked or you can submit one yourself. Also, our Support & Advocacy tab is very informational too. http://events.lungevity.org/site/PageSe ... TheExperts Talk with you soon.

How do you feel about today? Feel free to post your thoughts here.

Lung Cancer Screening Program Mather Hospital offers free lung cancer screenings for certain high risk smokers and former smokers to diagnose lung cancer in its earliest most treatable stages. Mather’s Lung Cancer Screening Program uses an advanced 320-slice CT scanner to perform the test at the lowest possible radiation dose. For more information, contact Eileen Zaoutis, RN, nurse navigator for Mather’s Lung Cancer Screening Program, at 631-686-2500. An influential panel of medical experts recently recommended that some former and current heavy smokers should be screened annually for lung cancer, which could prevent as many as 20,000 deaths a year. Lung cancer is the leading single cancer killer in the U.S. and cigarette smoking is the most important risk factor in the development of lung cancer. The U.S. Preventive Services Task Force said that low-dose computed tomography (CT) should be offered to people at high risk – those between ages 55 and 80 who smoked the equivalent of a pack of cigarettes a day for 30 years. The panel’s recommendation followed the release last summer of the results of a decade-long study of current and former heavy smokers ages 55 to 74 known as the National Lung Screening Trial (NLST). Participants were required to have a smoking history of at least 30 pack-years without signs, symptoms, or a history of lung cancer. The National Cancer Institute (NCI) sponsored the study, which established the use of low-dose CT scans as the first validated screening test that can reduce mortality due to lung cancer. http://www.matherhospital.org/imaging-services-lung.php

Be a Healthier Caregiver February 7th, 2014 - by admin From Aoi Goto ”4 Steps to Be a Healthier Caregiver” Nutrition plays an important role in a caregiver’s life, not only to reduce the risk chronic disease, but to maintain optimal health, well-being, and strength to support and care for a loved one. The benefits of proper nutrition include: Heart health – a heart healthy diet can lower your risk of heart disease. Bone and teeth strength – dietary calcium can helps prevent bone loss. The IOM recommends that most adults get 1000-1200 mg of calcium daily. Increased energy – balanced nutrition allows you to maintain steady blood sugar and energy levels. Weight control – it is important to be aware of caloric intake and balance it with energy expenditure for weight management. Where to Start First, always start off your day off right by eating a healthy breakfast. Many people do not have appetite when they wake up in the morning, but it is the most important meal of the day since it will help you keep energized throughout the day – the energy required to carry out the tasks of a caregiver. In order to maintain this energy, eat healthy snacks, such as fresh fruits or nuts that are full of nutrients that your body needs. Avoid highly processed foods and snacks that are loaded with preservatives and sugar, including sugary drinks. They are sources of empty calories and will not provide you with sustained energy. Learn how to read and understand the nutrition labels and to pay attention to them whenever you are buying groceries. Many food labels can be deceiving, so it is important to pay attention to the ingredients list as well to ensure you are purchasing a healthy food. Make mealtime enjoyable. Meal times are great opportunities to get together with your family and friends, which makes it a perfect time to talk about healthy eating and to share your knowledge about nutrition. Maintaining a healthy relationship with food is the key to a healthy lifestyle. Make healthier food choices by making simple changes. Here are some suggestions for each food group: Proteins: Limit how much processed meat and red meat you eat. Choose fish, poultry, or beans instead of red meat. Include more plant proteins like beans lentils, and nuts. Use healthy cooking methods, such as baking, broiling, or poaching. Vegetables/Fruits: Eat at least 5 servings of a variety of non-starchy vegetables and fruits per day. Include a variety at every meal and for snacks. Emphasize whole fruits and vegetables. Limit creamy sauces, dressings, and dips. Grains: Eat whole grains and/or legumes with every meal. Choose whole-grained breads, pasta, and cereals. Brown rice instead of white rice. Limit intake of high-sugar foods. Dairy: Choose low-fat or non-fat dairy products whenever possible. To learn about nutrition for cancer patients, take a look at our “HEAL Well: A Cancer Nutrition Guide, http://meals-to-heal.com/nutrition-guide/. It will provide you with information about basic nutrition and diet for cancer patients. It also provides some answers to how you can manage eating-related difficulties that may occur while you are caring for a cancer patient. Resources: “ACS Guidelines for Nutrition and Physical Activity.” ACS Guidelines for Nutrition and Physical Activity. N.p., n.d. Web. 07 Nov. 2013. Beesley, V.L., Prince, M.A., Webb, P.M. (2010). Loss of Lifestyle: Health Behaviour and Weight Changes after Becoming a Caregiver of a Family Member Diagnoses with Ovarian Cancer. Support Care in Cancer 19.2(2011): 1949-1956 Ennis, Edel, and Brendan P. Bunting. “Family Burden, Family Health and Personal Mental Health.” BMC Public Health. BioMed Central Ltd, 21 Mar. 2013. Web. 07 Nov. 2013.

LUNGevity Foundation Announces Additions to Scientific Advisory Board FOR IMMEDIATE RELEASE New Members Contribute Expertise and Vision to LUNGevity’s Research Program WASHINGTON (January 31, 2014) – LUNGevity Foundation, one of the nation’s premier lung cancer research foundations, announces two key additions to its Scientific Advisory Board: Dr. Julie Brahmer of Johns Hopkins and Dr. John Heymach of MD Anderson Cancer Center. The Scientific Advisory Board is an integral part of the foundation, guiding LUNGevity’s funding of research into early detection techniques and more effective therapies for lung cancer. The foundation seeks to get the most promising science to the patients as quickly as possible. Julie R. Brahmer, MD, is Associate Professor of Oncology at The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. Dr. Brahmer's research and clinical practice focuses on the development of new therapies, including immunotherapies, for the treatment and prevention of lung cancer and mesothelioma. Dr. Brahmer is a member of the American Society of Clinical Oncology and the Eastern Cooperative Oncology Group (ECOG) Thoracic Committee and Cancer Prevention Steering Committee. John V. Heymach, MD, PhD, is Professor and Chairman, Department of Thoracic/Head and Neck Medical Oncology at The University of Texas MD Anderson Cancer Center. Dr. Heymach's research focuses on investigating mechanisms of therapeutic resistance, understanding the regulation of angiogenesis in lung cancer, and developing biomarkers for selecting patients most likely to benefit from targeted agents. He also serves as a co-leader of the MD Anderson Lung Cancer Moon Shot Project. “Drs. Brahmer and Heymach bring highly regarded expertise in fields that are showing great promise in lung cancer. LUNGevity is focused on ensuring that we drive additional funds into the most promising areas of research. Drs. Brahmer and Heymach will complement our Scientific Advisory Board to guide us in this endeavor,” said Andrea Stern Ferris, President and Chairman of the Board of LUNGevity. “We are honored that they will be working with us to fulfill our mission.” Since 2002, LUNGevity has funded projects representing more than $16 million spent on 100 research projects at 56 institutions in 23 states and has connected people to lung cancer survivorship through research, education, and support. Throughout the year, LUNGevity coordinates grassroots and large-scale initiatives with the goal of funding research in order to extend patients’ lives and improve quality of life post-diagnosis. The research is specifically focused on expediting development of an effective early-detection strategy and identifying therapeutic agents that provide customized genetic treatments for lung cancer. About Lung Cancer 1 in 14 Americans is diagnosed with lung cancer in their lifetime. About 60 percent of all new lung cancer diagnoses are among people who have never smoked or are former smokers. Lung cancer is the leading cause of cancer death, regardless of gender or ethnicity. Lung cancer kills almost twice as many women as breast cancer and more than three times as many men as prostate cancer. Only 16 percent of all people diagnosed with lung cancer will survive 5 years or more, but if it’s caught before it spreads, the chance for 5-year survival improves to 52 percent. About LUNGevity Foundation LUNGevity Foundation is firmly committed to making an immediate impact on increasing quality of life and survivorship of people with lung cancer by accelerating research into early detection and more effective treatments, as well as by providing community, support, and education for all those affected by the disease. Our vision is a world where no one dies of lung cancer. For more information about LUNGevity Foundation, please visit www.LUNGevity.org. To schedule an interview with Andrea Stern Ferris, please contact Nina Foster at nfoster@susandavis.com or 202-414-0791

Hi everyone! It was cool here highs in the lower 50's Eric - Hope your friend gets her visa! The shows sound very exciting and entertaining! *****Oh my goodness YAY you are NED! I'm so HAPPY for you!***** I read that your Facebook friend will be visiting you soon. That's neat! I get excited like that when my friends from Keller come visit us, which is about a 20 minute drive, I can't imagine a friend coming from another country! Chat with you soon.

Hi can we get a roll call of advocates in here? Ready set go! CINDY ALMENDAREZ - I am an advocate. I advocate in remembrance of my grandparents and in honor of my friend Esther who is currently striving after 5 years and 2 months with lc.

Thinking of loved ones for Valentine's? Show them you care by sending a perfect e-card from LUNGevity. Send love and support for lung cancer research with just a few clicks. Here is the link below. https://secure2.convio.net/lf/site/Dona ... tion=form1

From the time of diagnosis, the lung cancer patient is thrown into a world of often unfamiliar medical language and concepts. LUNGevity Foundation has partnered with the medical experts at Global Resource for Advancing Cancer Education (GRACE) to help interpret complex medical language into easy-to-understand language. We also provide services such as the Ask the Experts online message board, and blogs, webinars, podcasts and videos on new developments in lung cancer and topics of interest to those navigating this disease. This enables lung cancer patients and their loved ones to better understand the medical terms, processes and latest advances associated with lung cancer research. The generosity of our donors allows LUNGevity to offer these services at no charge. http://ow.ly/tytBW

Friends Forever February 7th, 2014 - by Kenneth Lourie Since it had been more than a few months, today I summoned up the courage to Google my long-time friend and fellow stage IV lung cancer survivor, Suzanne. Suzanne and I had been years out of touch (for no real reason other than initiative and the geographic consideration that she lived in Barnstable, Ma. and I live in Burtonsville, Md.) and recently back in touch – due to our identical cancer diagnoses. I learned that she had succumbed to her disease back in October, 2013. We last had contact electronically back in the summer. She was extremely weak then, she said, too weak to talk, so e-mailing was best. In that e-mail, ultimately her last, she wrote that the most recent chemotherapy drug with which she was infused was no longer effective and that her oncologist had no other drugs left to recommend. Not that she said it in so many words, but at that point her prognosis was grim. She offered that her two boys were with her and from them she would gain great comfort. The news was very unsettling to me and I was afraid that this e-mail might be our last – and so it was. Suzanne and I were never boyfriend/girlfriend, but from Elementary School through High School we were extremely close and confidants of the highest order (“thick as thieves,” to invoke a quote from the warden in the movie, “Shawshank Redemption” describing the close relationship between Tim Robbins – “Andy Dufresne” and “Red,” – Morgan Freeman). Our friendship was forged during those formative, pre-adolescent years and maintained on – and then off – until back on again a year or so ago, for nearly 50 years. The reason I hadn’t inquired sooner than today was because I was fearful of what I would find out. Typically her e-mails were fairly random and on the occasion when I would e-mail her, she would rarely respond in a timely manner. I tried not to worry about this last silent interval. Today my worst fears were realized. Just as cancer survivors draw great strength from those of us still living with this terrible disease, so too are we weakened when one of us dies. Rather than feeling fortunate that I am still alive, I feel sadness that Suzanne is not. When one of us dies, we all die – a little bit, or at least, our resolve to persevere dies a little bit. I’ve always said that there is strength in our numbers, numbers that we cannot afford to lose. (Lung Cancer causes approximately 160,000 deaths a year, the leading cause of cancer deaths in the United States.) Certainly Suzanne’s death affects her family way more than it affects me. However, learning that she has died has given me pause to consider/reconsider how serious my health situation is. It’s ironic that Suzanne and I were friends for so many years and that ultimately we should be diagnosed with the same disease and given a similar prognosis. It seems only fitting that since we started together, we should finish together. I imagine I’ll see her soon enough. For the moment however, I hope it will be in my dreams – not that other place. How do you deal with the loss of someone you care about who’s fighting the same disease you are?

Patients to Loved Ones: 15 Reasons Why at Times I Want to be Left Alone Originally posted Wed, Jan 29,2014 by Brittany McNabb People with cancer often talk about how they need alone time. Some WhatNexters need time to cry, regroup, or process their journey. As a loved one of someone with cancer it may be confusing to figure out why they want to be left alone or why they seem to be pulling away. Here WhatNexters explain reasons why they may want to be left alone; everyone has their own reasons, but WhatNexters want loved ones to know that just because they need quiet time does not mean they don’t need love and support. I want to be left alone when… 1. I need to be left alone because it helps me turn back around and face the world. “Nights and weekends are spent with my husband and two daughters. Although I love the distraction they provide and enjoy that time with them, without my precious alone time I don’t think I would be dealing with things as well as I am. I don’t really have to explain why I need this alone time, because it happens when they are at work/school. But if I did have to explain it, I don’t know if they would understand. At least the kids wouldn’t. I use my precious alone time for anything I want. Reading, doing my stretching exercises, taking a bath, cleaning out a closet, taking a walk, cooking a new recipe, thinking, thinking, and more thinking. I deal with my darkest thoughts and I spoil myself. Then I give myself a big hug and get ready to turn and face the world.” - peachpoppy 2. I need time to reflect. “I do need alone time when I get overwhelmed or am just having a bad time with my pain and emotions. I usually go to the park up the road and find my peaceful spot as it helps so much. Even with winter here I still go at times and just sit in my truck by the pond listening to my music until I am ready and had my peace.” - riverratttt47w 4. I want to recharge my batteries. Giving your loved one with cancer time to recharge their batteries allows them to enjoy nature, take a walk alone, read a book, or just sit in their room quietly. When they are done they will come back feeling recharged and it will be comforting for them to know you are still waiting there to support them. “I do need alone time when I get overwhelmed or am just having a bad time with my pain and emotions. I usually go to the park up the road and find my peaceful spot as it helps so much. Even with winter here I still go at times and just sit in my truck by the pond listening to my music until I am ready and had my peace.” - riverratttt47w “I love to be by myself listening to the leaves shaking because of the wind, listening to the birds and mother nature sounds. When I am done being alone, all my batteries are recharged. Luckily I don’t even have to explain to my husband. I mediate, I pray, and then I come back to continue fighting.” - glam “Being alone to recuperate and recharge is a good thing. Prolonged hiding out could be a symptom of clinical depression. Fine line there so I am careful but still need that time to recharge.”- melanomamama 5. I need to cry and don’t want to do it in front of anyone. While you might feel that you want to cry with your loved one with cancer, sometimes it may help them to understand they don’t want to cry in front of anyone. They may want privacy or they may not want to feel weak in front of you. “My private time was when my husband went to work and my daughter went to school and I had my private time. Those were what I refer to my closet days. I cried a lot and I did it alone. I got angry at who I don’t know, I questioned my faith, and I reflected. I learned to take it one day at a time. I new that tomorrow would come soon enough.” - ladyd2013 6. I need to regroup. “To regroup and gather myself for the coming storms.” - Facebook Contributor “Sometimes I just have to regroup. Doesn’t mean I don’t love everyone around you.” - Facebook Contributor 7. I need time to try and let things go. People cope in different ways and some WhatNexters say that they need to process what is happening so they can learn to let things go. If you give them time to let go then they can then be ready to share those feelings of relief with you. “I will not cry in front of others and my husband is in total denial of where I am in this time of my life and illness. For him, life goes on without interruption. For me, being Stage IV I am constantly interrupted with doctor visits, side effects, phones ringing and the guilt of not being able to see my Mother and Sister regularly. Mom has Alzheimer’s and the emotional pain is huge, along with my own. I need the time to truly let go.” - KatNT 8. I need to be alone when I feel sick. Some WhatNexters want space when they feel sick; many have said that they appreciate when family gives them space when they don’t feel good or just don’t feel up to talking and socializing with others. “I decided I had to have alone time to heal and reflect. Especially if I was not feeling good. I couldn’t see the point of having someone watch me be sick when I was in no mood for conversation. It also made it easier to cry if I wanted to. Or sing if I wanted to do that. I thoroughly enjoyed my time alone.” - mcshap 9. I just got bad news or I am waiting on test results. Family and friends often want to hold their loved one’s hand and try to ease their anxiety while waiting on test results or coping with good news, but some WhatNexters need to cope in peace at those times. “When I get bad news regarding my illness or am waiting for test results, I don’t feel like talking. I usually keep to myself for awhile until I can process the information.” - Facebook Contributor 10. I am having mood swings and don’t want to hurt anyone’s feelings. Some WhatNexter struggle with mood swings and depression and feel like they don’t want to hurt their loved one’s feelings or say something they will regret. At these times they may need to retreat and be left alone. “I have been experiencing some mood swings and at those times is when I need to be alone the most. I feel like I can be very hurtful at times when I don’t mean to be. I just need to be alone during these times. My family understands and they don’t take anything personally.” - PJki 11. I need silence and time to process. “I enjoy the silence and like to be left alone a lot but I feel selfish for asking for my space at times. I think and process a lot.” - Facebook Contributor 12. I need “me time” to do something I love. “I have always needed to be alone. That is why I am an early riser. I am most creative when I am alone, Being sick has forced me to have some relative “check up on me” time. My daughter had the tendency to hover. So much so I once found a Red Lobster coupon and sent her with my credit card to have lunch.” - BoiseB 13. Because sometimes I need to celebrate cancer milestones alone. WhatNexters say that there is a time to celebrate with others, but sometimes the best celebration is when they can feel peace with themselves over their own victory. “I need alone time. I had the flu recently and needed two days to process the symptoms and sleep. No phone calls required. Had my four months follow up tests on Monday and after an MRI in July I don’t need to be seen again until next year. Progress! I sometimes keep time for myself because I find that friends don’t understand the significance of these cancer milestones. They take it for granted that the cancer is gone. One thing I have learned through this process is to take nothing for granted.” - ld_105 14. Because I need my own time to correspond with others with cancer. No matter how much support loved ones can provide to their person with cancer, sometimes it is comforting for WhatNexters to be allowed their own time to reach out to others that know what they are going through. Many say that is the reason why they value WhatNext because it gives them an escape and allows them to be a part of a community that just gets it. Loved ones should not take offense to this, they still need your love and support, but it is also important to understand that they need to confide in others with cancer. “There were moments in the beginning where I wanted to be alone more often. I didn’t want my wife to see me cry, so I tried to wait until she went to work, (she worked nights). We have been married 46 years and she knows when I want to be alone. I am a 13 year pancreatic cancer survivor, and I now want to be alone for different reasons. In the beginning it was so I could cry without anyone seeing me, and now it is so I can clear my mind. Like many of you I am on the internet everyday, (4-6+ hours), working with people who have cancer, and it takes its toll on me…especially when someone passes away. I’ve been doing this for 12+ years, and if I don’t take breaks, I begin to relive my own experiences all over again. I’m not talking about 15 minute breaks, I’m talking about anywhere from 2 weeks to 30 days, and sometime a little longer. I feel strongly about our obligations as survivors to reach out to all of those who are following in our footsteps, and who are newly diagnosed with cancer. If I don’t take these breaks, and clear my mind, I am no good to anyone. So I do myself a favor, and take a break to be alone from time to time.” - Russ 15. I need to process the brevity of life. Cancer and the prospect of having less time, especially for those with advanced cancer, can be a hard thing to process. A lot of WhatNexters have difficulty doing this with the pressure of loved ones hovering or waiting for their next move. Try to find a balance between being there for them and giving them time to process things on their own. http://blog.lungevity.org/2014/02/11/pa ... eft-alone/

Here is how: “Why you should come to HOPE Summit” Video Contest! We want to hear why you think people should attend LUNGevity’s HOPE Summit. Make a video of why you think HOPE Summit is important and should not be missed! Submit your videos to Dropbox (kbrown@Lungevity.org) or upload your videos to Vimeo or YouTube and provide us with the link. Videos can be testimonials, skits, advertisements, PSA-like- IT’S UP TO YOU. Your video can be funny or moving but it should be original and HOPEtastic! Please put HOPE Summit Video Contest in the subject line of your email with your full name, phone number and mailing address. You may submit your videos beginning February 17th. The final day to submit your video is February 28, 2014. Only one entry per household will be accepted. Not only will the winning video be played at the 2014 National HOPE Summit in Washington DC, the winner will be able to attend the Summit in person, US travel and accommodations courtesy of LUNGevity Foundation! We can’t wait to see your videos! Ready? Set. ACTION! *Winner will be announced no later than March 3rd. Winning video will be played at the 2014 National HOPE Summit. The winner will receive round trip US airfare and hotel accommodations for 2 nights May 2-4, 2014 to attend the Summit. All video submissions to LUNGevity become the property of LUNGevity and may be reused, posted and replayed in whole or in part. http://blog.lungevity.org/2014/02/11/20 ... o-contest/

TOMORROW NIGHT Feb 12 at 6pm central. Katie will be moderating questions for Dr. Weiss. Topic "Busting Lung Cancer Myths" Join us and submit your questions! Let's get lung cancer trending on Twitter and raise some awareness! #LungChat http://www.Twitter.com

Annabelle helped start the Lung Hill Run (now Breathe Deep Kansas City), and worked tirelessly to raise critical funds for our lung cancer research program. We will miss her spirit and will continue our work in her memory, and in honor of all of the volunteers who make this organization strong. Please watch her video here: Our thoughts and hearts go out to the family and friends of one of our event founders, Annabelle Buckner Allen, who passed away this morning. http://www.caringbridge.org/visit/annabellebuckner

Thank you Diane for opening the Friday air!! I'm not sure why your son didn't listen to you about the chains. I bet he will from now on. Has he been able to retrieve his vehicle since he parked it? So the prednisone makes you jumpy? What does your Doctor say about that? I would call until you could get a change that will be comfortable for you. Lilyjohn, will you still be in the same city as you are now? It's cool here again, with dark clouds and freezing drizzle. Is it just me or do the dark clouds make it hard to stay energized? I hope you both & everyone who reads this will have an AWESOME Monday!

Come drop in the Lung Cancer Support Community 24/7, anywhere in the world. You can chat with us using your smart phone! We are MOBILE! Get the FREE App here ==> http://tapatalk.com/

Happy Thursday everyone! Well it got cooler today in Dallas! It snowed. They said it would be a "light dusting" which to me means like dust you might see in your house if you didn't dust for a MONTH! No. This was about an inch. Well I freaked out and picked up my children early. Last time we were to only get "a little" sleet the entire city was under a sheet of ice that trapped us in our homes for days. So oh well, I took them out this time and the meteorologist was actually right THIS time. I'm attaching a pic of the first snowman I've ever made with my children. The eyes are from a halloween pumpkin mr. Potato Head set & the mouth is a strip of fabric. My kids had a blast scraping all the snow off of the ground to make this happen! That was a moment for the memory bank. LOVE is the air I hear. I didn't even realize Valentines day was so close until Monday I was told to bring drinks for my kids party at school. Drinks are easy. I can do that. I'm thinking of a juice pouch with heart stickers. Looks creative, not too much effort. Done. I'm taking the day off tomorrow, so who wants to post the Friday air? Has anyone checked out any of the other posts I've made this week? In the other forums? Tell me what's going on with you? What are your plans this weekend?

Many patients with advanced cancer are often unaware of the risk and related complications of cancer spreading to their bones. • More than two-thirds of advanced breast cancer patients • Up to 90 percent of advanced prostate cancer patients • 36 percent of advanced lung cancer patients The Bone Health in Focus™ initiative offers: • A website with a series of Bone Health Reports that feature tailored information for prostate, breast and lung cancer patients and their caregivers • Tips and tools for discussing bone health during cancer treatment with healthcare providers • A Video Diaries series where patients can learn about Manuel’s story and hear from a caregiver, an advocate and healthcare providers who offer first-hand perspectives on the spread of cancer to the bone Please visit www.BoneHealthinFocus.com, they can gain additional valuable information there.

Changing My Mindset February 4th, 2014 - by Jill Feldman I am someone who remembers dates, especially ones that are life changing, but for some reason my ‘cancer-versary’ has come and gone each year without much thought. There are times I have referred to my life as BLC (before lung cancer) or ALC (after lung cancer), but I don’t want the cancer to define me so I have never measured my life by ‘that day’ or how many years since I was diagnosed. This year was different. January 19th was five years since my first surgery, since I was diagnosed with lung cancer. Lately I’ve been thinking about the days, weeks and months following that first surgery and how different I imagined the last five years would have been. Of course I was shocked, upset and in disbelief when I was first diagnosed with lung cancer. How could I not be after learning I had the same disease that I literally watched kill my mom and dad, and so many others I loved. But, I honestly thought it would be different for me. I was going to beat lung cancer. I was going to change that pattern in my family. There was a lot of talk and excitement about early detection increasing survival rates in lung cancer five years ago. I was prepared to be proof. My cancer was caught early, removed and I was cured! I was the poster child for early detection, the story of hope; hope that lung cancer patients and their families desperately needed. So, to make sense of my diagnosis I told myself that I took one for the team and that my voice was going to be powerful. Never did I think that the lung cancer would return, I would have another surgery 2-1/2 years later, and I certainly never imagined that only a few months after that my diagnosis would drastically change and my mentality would have to switch from cure to manage! It was the first time I actually felt fear, crippling fear. I was sick about how quickly the disease progressed. My poor family. How many times does one family have to helplessly watch lung cancer physically and emotionally attack someone they love? I felt horrible and sad for my husband, Jason, but the worst was the fear I had for my four kids. What does this mean for them? Will they face the same path? For a long time I could barely look them in the eyes thinking that despite being my own advocate, my kids will most likely go through what I did, the loss of a parent at a young age. I felt defeated, and I was tired of fighting lung cancer. I was in a bad place for a long time. I could not figure out how to live with the fear and not allow it to consume me. Help came last year when I consulted with a doctor in Colorado whose research is focused in an area relative to my situation. I liked Dr. Ross Camidge from the moment I met him, but I thought he had lost his mind when he told me, in a very upbeat manner, that I was fortunate my stage IV lung cancer was caught early. I couldn’t figure out how “fortunate” and “stage IV” could be used in the same sentence – a complete oxymoron! In my mind, stage IV means no cure and no victory. How is that hopeful or encouraging? I could not stop thinking about it or even begin to understand what he meant. It consumed me for a while, but I finally realized that I was so focused on the literal meaning of stage IV and incurable that I could not see the forest through the trees. It wasn’t easy, but I had to re-frame my thinking and not only see, but believe, that stage IV caught early is fortunate, that I am fortunate. I am still a story of hope! While early detection didn’t result in a cure for me, it certainly will make a difference, it already has, by not only extending my life but the quality in which I live it. I can take ‘treatment holidays’ and escape to Gumdrop and Lollipop Land in the summer. I can feel good and look healthy in my kids’ eyes right now. I have that luxury because my stage IV was caught early, so the cancer can be managed as a chronic disease, at least for now. I have talked about the miracle of targeted therapies prolonging and bettering the lives of so many diagnosed with lung cancer. I am only now comprehending and appreciating that ‘stage IV caught early’ can do the same. My dad died 3 months after his diagnosis and my mom died 6 months after her diagnosis. What if their stage IV was caught early? Maybe my dad would have lived just a few more weeks to see me graduate 8th grade, or maybe even long enough to see me graduate high school. And maybe my mom could have lived six more months and been there for the birth of my daughter, or maybe even long enough to meet all of her grandchildren. Those are the treasured milestones that were stolen from my parents –and from me. I am fortunate to have already lived five years, and I am confident that I will be here for my children, my husband, and important milestones, for many years to come; I am fortunate for so many reasons, including my ‘stage IV caught early’ diagnosis. January 19th was not the ‘five year cancer free’ milestone I thought it would be, but living with lung cancer for five years is pretty significant. I am in a good place now, but it wasn’t easy and I didn’t get here overnight. My journey over the past five years has been more difficult than I imagined. I wasn’t prepared for the dark and scary tunnel where I had to face cancer’s best friend; fear. I don’t like to feel vulnerable, but there was no escaping the emotional roller coaster and while I was humbled by the ride, I needed to find peace. A positive attitude approach has never been for me (I am too realistic and pragmatic). I found that my greatest weapon against fear was changing my mindset; that is something I can control. Our thoughts control how we feel, act and behave, and thinking about ‘what could be’ was very punitive. It is a lot of work and exhausting at times, but each day I try to consciously embrace and believe in my ‘what I know today’ mindset. It doesn’t always work, and the fear and distress never go away, but it is bearable because my beliefs are sustained by my hope. The hope I have is real because I can now recognize that hope is relative, and I now think, and believe, that hope means so much more than simply a ‘cure’ for lung cancer. Funds for lung cancer research are critical, and hope for lung cancer patients is paramount. Living with hope, however, requires a great deal of effort for those who are confronted with the disease. Solid support from family, friends and others affected by the disease helps fuel that hope. Please join me at Breathe Deep North Shore on April 27th at Deerfield High School. You can donate or join my team, Just Breathe, at http://events.lungevity.org/goto/jill) or start or join another team at www.lungevity.org/northshore

Targeted Therapy as Adjuvant Treatment: Should We Extrapolate from Advanced NSCLC to Earlier Stage? February 5th, 2014 - by Dr. Jack West This past week, I saw a new patient who had just moved from another part of the country and needed long-term management of her high risk lung cancer. A never-smoking Asian woman, she was found to have a stage IIIA lung cancer with “N2″ mediastinal lymph nodes involving cancer in her mid-chest. As is typically done, she received chemotherapy with a cisplatin/Alimta (pemetrexed), a very strong treatment option for her lung adenocarcinoma, and she then proceeded to surgery. There, she was found to have a small amount of residual cancer in her mediastinal lymph nodes, which suggests a high risk of recurrence. Her oncologist recommended post-operative radiation to treat this area. Though radiation to the mid-chest is commonly and I think appropriately favored for patients with residual N2 nodal disease after surgery, especially if they hadn’t received it before surgery, this woman declined the radiation. She was far more receptive to more systemic therapy, especially in the form of targeted therapy once it was discovered that her tumor has a ROS1 rearrangement. This is rare (only about 1-1.5% of lung cancers, disproportionately in younger never-smokers with an adenocarcinoma) and has been found to very often respond well to XALKORI (crizotinib), the same agent used for the 4-5% of patients in the US (more in Asia) who have an ALK rearrangement, for whom XALKORI is approved. XALKORI isn’t technically FDA approved for people with a ROS-1 rearrangement, but it’s often covered by insurers when they are made to understand the profound value of this agent for these rare patients. But when we talk about XALKORI for patients with an ALK or ROS1 rearrangement, or an EGFR tyrosine kinase inhibitor (TKI) like Tarceva (erlotinib), Iressa (gefitinib), or Gilotrif (afatinib) for those with an EGFR mutation, we’re focusing on the overwhelmingly favorable data obtained in patients with metastatic cancer. It’s an entirely different situation with curable and potentially cured lung cancer. When someone has undergone surgery or chemo/radiation or some other combination for stage I-III NSCLC, we know that some of these people are already going to be cured without adding any other treatment. When we give targeted therapies for lung cancer who may already be cured, we often presume we can only be helping them. However, that wasn’t true when adding Iressa after chemo/radiation for patients with stage III NSCLC — in fact, Iressa was significantly harmful and shortened survival. We decided, with the benefit of hindsight, that this was because the patients on that trial were not molecularly selected as having an EGFR mutation; they didn’t check for or require EGFR mutations, so we presume that 90% didn’t have an EGFR mutation, and we know such patients typically benefit modestly at best from EGFR TKIs. However, when we saw the results of a trial of post-operative (adjuvant) Iressa in early stage NSCLC patients, we saw that not only was there a trend toward worse outcomes for the recipients of Iressa in the overall, molecularly unselected population, but the trend of worse outcomes was especially pronounced in patients with an EGFR mutation. If there was ever an observation that was humbling in highlighting how wrong we could be in our presumptions, it was that one. That hasn’t clearly dampened the enthusiasm of some believers, who note that there are promising early results from the SELECT trial, a single arm study of patients with an EGFR mutation who underwent surgery for early stage lung cancer and then were placed on Tarceva as adjuvant therapy. It’s true that they demonstrate an impressive recurrence-free survival, at least for a couple of years after surgery, with results arguably better than you’d expect to see without this treatment, but there isn’t any evidence that patients actually live longer, and a suggestion that patients may be at high risk to relapse as soon as you stop the therapy. Here’s my fear: We have no evidence that you cure anyone who wasn’t already cured by adding a limited duration of a targeted therapy, even in people with no evidence of disease. The idea of adjuvant chemotherapy is that you can give 3-4 cycles of chemotherapy to kill a few stray microscopic cancer cells that may still be present after surgery, but after that time-limited treatment, you’re done. If adjuvant targeted therapy suppresses but doesn’t kill enough cancer cells, even after surgery, that you don’t need it indefinitely (an average of 5 months on the Canadian BR19 trial led to an apparent rebound progression after it was discontinued, so 2 months longer than the maximal duration of adjuvant chemotherapy didn’t help in any way), adjuvant targeted therapy is only postponing recurrence that was going to happen anyway, for as long as it takes before acquired resistance to develop. Then you’ve exhausted your most effective therapy by giving it perhaps 2-3 years before there might be visible evidence of cancer to treat, while a patient had no symptoms, but you’ve given them side effects of treatments and incurred the costs of years of treatment. And if half of the people with a stage I cancer positive for an EGFR mutation, for instance, would have never recurred because they’d have been cured by the surgery, so they’re just taking Tarceva for years or indefinitely and experiencing the known and unknown side effects of years of treatment that isn’t helping them at all. In other words, adjuvant treatment with targeted therapy seems to be very good at doing exactly what we expect it should be able to do: postpone evidence of recurrence in the short term. We’d expect this because many patients are already cured, and those who would have progressed at 15 months, for instance, might have their recurrence postponed until 2.5 or 3 years out from surgery, when their cancer develops acquired resistance — and then they’ve exhausted their best treatment at a time when they had no evidence of visible cancer, experiencing side effects during that time. They may end up with a shorter survival than the patients who just had the cancer recur at 15 months, then go on Tarceva at recurrence and respond very well for the same time they would have had by taking it earlier. But if we only give it to the patients with recurrence, we avoid giving people who are already going to be cured the targeted therapy for years or indefinitely, with all of the costs and side effects that come with it. As I see it, the counterargument is that perhaps acquired resistance can be slowed by giving targeted therapy when there’s minimal cancer that can develop resistance. However, we’ve never seen evidence that time to development of acquired resistance is predicted by or correlated with the “tumor burden”, the volume of cancer in the body, when a person starts targeted therapy. This is a question that begs for a proper, randomized trial to clarify whether adjuvant targeted therapy helps, harms, or has no effect on overall survival. It will clearly increase costs, and expose some patients to completely unneeded treatments. If it helps cure patients, it’s worth it, but we can’t presume that’s going to be the case. What do you think? Would everyone here take a targeted therapy indefinitely after surgery if they were found to have an EGFR mutation, ALK rearrangement, or ROS1 rearrangement, and had a 50% chance of being cured without any further treatment? What if, because it hasn’t been proven to be helpful, it wasn’t covered or had a significant co-pay and required hundreds or thousands of dollars out of your pocket every month?

Lung Cancer Clinical Trials Call to Action We want you to be aware of all treatment options. We are working with EmergingMed and other partners in the lung cancer community to offer you a way to take action - a free, confidential, personalized service that helps you understand which lung cancer clinical trials may be an option for you. Clinical trials are research studies that test how well new medical approaches work in people with early stage or advanced lung cancers. They have a natural place in your care as doctors strive to improve current lung cancer treatments and search for new and better ones. How does the service work? We help you quickly search for clinical trials that match your specific diagnosis and treatment history (read more). We recommend that you search for clinical trial options before you begin your first treatment and again at any time you are faced with a new treatment decision. The service is free and completely confidential. We encourage you to call 800.698.0931 to find clinical trials that match your situation and to learn more about cancer research. You may also complete a profile online. Our clinical trial navigators are available Monday through Friday from 8:30am to 6:30pm ET. Why should I be interested in clinical trials? Your goal is to find the best treatment available whenever you make a treatment decision. There may be a good standard of care for you-- care that experts believe is appropriate for your specific diagnosis and treatment history. However, sometimes the current standard of care is not as effective as you and the doctor would like. Sometimes the standard of care works for awhile but then stops working. Sometimes there is no standard of care for your situation. At these times, participation in a clinical trial may be the best available option for you. Why should I consider searching for clinical trials as soon as I am diagnosed? To be eligible for clinical trials, timing is everything. If you enter treatment without considering trials, you may later find you are ineligible. Our service helps you stay informed about all your choices. We never want to hear you say: "I wish I had known about that option earlier". Can you help me start a conversation with my oncologist about this? Yes. It is important that you first take information about clinical trials to your doctor to discuss. We have developed a set of materials that can help you. Click here to review, save and/or print out: Questions For Your Doctor About Clinical Trials, Glossary of Terms, and Sample Letter to Doctor. http://www.emergingmed.com/networks/LUNGevity/

Helping to save lives with low-cost lung cancer screenings Lung cancer remains the leading cause of cancer-related death in both men and women in the United States.According to the National Cancer Institute, smoking is the biggest risk factor for developing the disease. Aiming to promote the early detection of this disease, the Thoracic Oncology Program at Rutgers Cancer Institute of New Jersey has partnered with its Flagship Hospital Robert Wood Johnson University Hospital (RWJUH) and University Radiology to offer $99 lung cancer screenings to the community. The screening is aimed at those who are at high risk for developing lung cancer due to current or past smoking habits and/or a history of chronic lung disease. Smokers and former smokers over age 50 with 30 or more “pack years” (number of packs of cigarettes smoked per day multiplied by the number of years smoked) are encouraged to participate in this screening.The process involves a low-dose computerized tomography (CT) scan of the chest and usually takes about five to 10 minutes to complete.The CT scanner uses an x-ray source similar to that used in an ordinary chest x-ray, however the x-ray beam is so tightly focused that portions of the body outside the scanned region receive very little xray exposure. The advanced scanning technology produces highly-detailed two- and three-dimensional images of the chest area. If the test is conducted at one of this program’s radiology locations, scan results are read and interpreted at no cost by board-certified specialists, many of whom participated in the National Lung Screening Trial (NLST). In 2010 the NLST showed for the first time that a screening CT scan reduced lung cancer deaths. In the study, 20 percent fewer lung cancer deaths were found among those who received the CT screening versus those who underwent a standard chest x-ray.The Cancer Institute of New Jersey was one of 33 study sites nationwide that participated in that effort. This past summer, the United States Preventive Services Task Force made a draft recommendation that those at high risk for lung cancer should be screened annually with low-dose CT scans.“The $99 cost is helpful in providing those individuals with the means to at least have a baseline assessment, as many insurance companies usually will not pay for the test unless someone already has findings worrisome for lung cancer,” notes medical oncologist and co-director of the Thoracic Oncology Program, Joseph Aisner, M.D., who is also a professor of medicine and environmental and occupational medicine at Rutgers Robert Wood Johnson Medical School.“Because the Thoracic Oncology Program recognizes the importance of early detection and ensuring the best outcomes for lung cancer patients, we are helping to subsidize this cost for high-risk individuals.” The average scan typically costs $300 without insurance. Just as important, John Langenfeld, M.D., thoracic surgeon and co-director of the program, notes while there is a benefit to the screening it should not deter smokers from efforts to quit.“CT testing has been shown to help with the early detection of lung cancer, but individuals should keep in mind that the screening does not prevent the development of the disease.The most effective way to decrease lung cancer incidence and death is to help smokers with tobacco cessation efforts,” said Dr. Langenfeld, who is an assistant professor of surgery/ cardiothoracic surgery at Robert Wood Johnson Medical School and acting chief of thoracic surgery at RWJUH.“Through the Tobacco Dependence Program at the Cancer Institute, Robert Wood Johnson Medical School and Rutgers School of Public Health, individuals have access to free quit resources including one-on-one and group counseling; quit aids such as patches, gums and inhalers; and consultation with medical professionals for prescription therapies for those who qualify.These efforts, coupled with our new screening program, are vital to the Thoracic Oncology Program’s efforts to help reduce the impact of lung cancer.” To make an appointment at University Radiology’s Plum Street location in New Brunswick (or to find other participating locations), call 732-235- 5947 or visit http://www.cinj.org/lungcancerscreening to learn more about the program http://www.cinj.org/patient-care/lung-c ... ng-program

She is adorable! I bet those cheeks just call for kisses!