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We Need Your Help! LUNGevity has partnered with The Lung Cancer Project to do research that will help us better understand the social psychology of lung cancer. At the foundation of the project is a short online test that can help us uncover what patients, caregivers, doctors and the general public think about people with lung cancer. How You Can Get Involved: Click here http://www.thelungcancerproject.org to take a short test; it shouldn’t take more than 10 minutes. Why This Research Project is So Important: Did you know that many people with advanced lung cancer never receive cancer care, far more than for any other type of cancer? Emerging research suggests that specific perceptions of lung cancer such as stigma, blame and hopelessness may be a factor. How It Helps the Lung Cancer Community: You will receive results at the end of the test that reveal your own perceptions of lung cancer, and these anonymous results will be part of a larger research study that will help us to determine if subconscious biases exist for lung cancer, and if so, to understand why people are biased, how those biases impact lung cancer care and to address misperceptions of lung cancer. For more information on The Lung Cancer Project, visit http://www.thelungcancerproject.org. Thank you for your support on this important Project.

http://www.wusa9.com/news/article/22111 ... d-Research WASHINGTON (WUSA) -- It's thought of as a "smoker's disease," but now more than half of all lung cancer diagnoses are in non-smokers. With 160,000 deaths a year, lung cancer remains by far America's top cancer killer. Thursday morning, lung cancer survivor Joey Smith and LUNGevity Foundation President Andrea Stern Ferris shared some good news about the fight against this disease, and more on a special event Friday night. See our interview with them above. The Musical Celebration of Hope Gala happens Friday at 7 p.m. at the Andrew Mellon Auditorium at 1301 Constitution Avenue NW in D.C. Go here for more details: http://hopegala.lungevity.org/

Should We Tell? September 12th, 2012 - by Juhi Kunde http://blog.lungevity.org/2012/09/12/should-we-tell/ I am drained and tired. I have nothing to write about. My ideas are stupid and my words are cliché. I can barely draft a complete sentence. Why am I so fried? Because I just found out someone dear to me has cancer. I keep trying to read as much as I can about it. But all I have is the generic name of the cancer. And I can only go so far with that on Google. I need more information but the family is reluctant to tell me more. They know that I will attempt to gain control of the situation. They know that I will be up late at night scouring the millions of cancer pages on the internet for hidden answers. So, they speak in circles and make me dizzy with worry. I wonder if it could be a cultural thing – an Indian thing. Maybe it’s an artifact of immigration. Or perhaps it’s just that modern families are often spread across the country or even across the world. In so many families the question arises: Should we tell them? Whatever the specifics, the basic scenario is the same: the family is split-up. Typically, the parents still live in their home while the kids have grown up and moved away. Then the inevitable case of poor health strikes someone, somewhere. And the question rears its ugly head. Most families have an unspoken understanding of some sort. Often minor illnesses, such as colds and ear infections, are safe to keep from the rest of the family but anything requiring a cast or hospitalization should be disclosed. In these situations, most family members want to hear the news, however bad it is. But sometimes the other family members are unwilling to burden them. They don’t want them to worry. They don’t want them to spend hours on the internet instead of working. They don’t want them to buy expensive last-minute airline tickets. But they also don’t want to lie. So they tell partial truths. Or they “forget” to mention the critical details. Or they pretend the reports have been delayed. The irony is that all these antics to avoid causing worry could be causing far more concern than the naked truth would have. Obviously, my preference is for sharing the complete truth but I know there have been situations where I had to think long and hard about who to tell and how much to tell them. What about you? Did you have to decide how much to tell your family about your cancer journey? Did you have to decide whom to tell? How did you make these difficult decisions?

Shakin' It Up!! To End Lung Cancer http://events.lungevity.org/site/PageNa ... 91312.html FOR IMMEDIATE RELEASE Media Contact: Victoria Shapiro vshapiro@susandavis.com (202) 414-0774 Nation’s largest lung cancer-focused nonprofit hosts its inaugural Mixology event in Pittsburg, PA, September 20, 2012 WASHINGTON (September13,2012) – LUNGevity Foundation, the nation’s largest lung cancer-focused nonprofit, is excited to announce additional, premier Mixologists for its first Pittsburgh event, the first-ever Shakin’ It Up cocktail (and mocktail) competition in Pittsburgh on September 20—a fun and exciting twist on the mixology competition to celebrate today’s healthier lifestyles and build awareness and raise critical dollars for lung cancer research. Top mixologists in the Pittsburgh area, including Colin Anderson, Bar Marco; Tara Shinn, Cioppino Seafood and Steakhouse; Kevin Saftner, James Street Gastropub and Speakeasy; Marie Perriello, Stir Society; Allie Contreras, Verde; Kory Husson, Plum Pan-Asian Kitchen; Mike Mills, Meat & Potatoes; Stephen "Stevie P" Pacacha, Liquid Flair, LLC; and RaeLynn Harshman, Dish Osteria and Bar, will compete to create a signature cocktail using unique mixers and finishing with their magical secret ingredients to leave you wondering what made it so scrumptious! We are deighted to have Penn 1681 as the spirit sponsor for the event. The real fun will come when guests and celebrity judges, including such names as Michael Green, former Wine and Spirits Consultant of Gourmet Magazine, and Bill Toland, reporting on spirits, liquor, cocktails, and bars for the Pittsburgh Post-Gazette, pick the top awards: the People’s Choice Award and the Judges’ Award. Join us for drinks, appetizers, live auction, raffle and music. Along the way you may learn what makes a good drink great. “I am thrilled to be a part of such a unique event,” said Michael Green. “The quality and interest in healthy cocktails and mocktails has increased dramatically throughout the past few years, and I cannot wait to taste the creations from some of Pittsburgh’s best bar chefs. I am proud to be part of this event and support the great work of LUNGevity.” The September 20th event will start at 7:00 pm at the Jay Verno Studios, 3030 Jane St., in Pittsburgh’s Southside. At 9:00 pm the live auction will start, followed by the announcement of the Mixology winners. In addition to the tasting area and entertainment center, VIP Sponsors will be invited to the judges’ lounge where you can meet the judges and get insider tips on Mixology. "We are delighted to be hosting an event in Pittsburgh. Our goal is to support the community touched by lung cancer. Together we will build momentum towards stopping this disease." said LUNGevity Foundation President Andrea Stern Ferris. In the past two years, LUNGevity has awarded over $5 million to the most promising lung cancer research proposals in the areas of early detection and targeted therapeutics. In addition to funding research, LUNGevity also provides the largest online support community for those affected by lung cancer, medically-expert information, a caregiver resource center, and has the largest national grassroots lung cancer network, with events happening across the country. About LUNGevity Foundation The mission of LUNGevity Foundation is to have a meaningful impact on improving lung cancer survival rates, ensure a higher quality of life for lung cancer patients and provide a community for those impacted by lung cancer. It does so by supporting critical research into the early detection and successful treatment of lung cancer, as well as by providing information, resources and a support community to patients and caregivers. LUNGevity seeks to inspire the nation to commit to ending lung cancer. For more information about the grants or LUNGevity Foundation, please visit http://www.lungevity.org. About Lung Cancer 1 in 14 Americans is diagnosed with lung cancer in their lifetime 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 About 55% of all new lung cancer diagnoses are among people who have never smoked or are former smokers Only 16% 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 dramatically

LUNGevity Foundation Applauds AACR Cancer Progress Report 2012, LUNGevity Spokesperson and Lung Cancer Survivor Monica Barlow to Speak at Release Briefing Conference Today http://events.lungevity.org/site/PageNa ... 91212.html FOR IMMEDIATE RELEASE Media Contact: Victoria Shapiro vshapiro@susandavis.com (202) 414-0774 Foundation Representatives Available for Interviews WASHINGTON (September12,2012) – LUNGevity Foundation, the nation’s largest lung cancer-focused nonprofit, commented today on the release of the American Association for Cancer Research’s AACR Cancer Progress Report 2012. LUNGevity Foundation President Andrea Stern Ferris and LUNGevity spokesperson and lung cancer survivor Monica Barlow, will attend the National Press Club press conference for the release of the report today, September 12, at 2 p.m. EST. Barlow, whose experience with lung cancer is featured in the report, will be a featured speaker at the event. Both Ferris and Barlow are available for interviews. “I applaud the AACR for the strong case for funding of research documented in the new report,” said LUNGevity Foundation President Andrea Stern Ferris. “Progress in lung cancer research is giving us reason to be hopeful, and personalized medicine is greatly improving the treatment experience, including quality of life, for some lung cancer patients. Monica Barlow’s experience being treated with crizotinib for her ALK mutation is a great example of this. She’s able to lead a busy and full life. We are calling the nation to commit to funding research that will save lives. With research funding, there is hope for those impacted by lung cancer and other cancers.” “I’m pleased the AACR featured my story about living with lung cancer in their Cancer Progress Report 2012,” said LUNGevity Foundation spokesperson and lung cancer survivor Monica Barlow. “Lung cancer affects one in 14 Americans, and it’s critical that the disease receives more attention at the national level. My greatest hope is that more research funds go into finding more effective detection and treatment methods for lung cancer, and all cancers. Personalized medicine can help cancer survivors greatly.” LUNGevity, like the AACR, also supports critical research. With a world-class Scientific Advisory Board, the Foundation has the largest grants award program for lung cancer research among lung cancer nonprofit organizations in the United States. In the past two years, LUNGevity has awarded over $5 million to the most promising lung cancer research proposals in the areas of early detection and targeted therapeutics. In addition to funding research, LUNGevity also provides the largest online support community for those affected by lung cancer, medically-expert information, a caregiver resource center, and has the largest national grassroots lung cancer network, with events happening across the country. About LUNGevity Foundation The mission of LUNGevity Foundation is to have a meaningful impact on improving lung cancer survival rates, ensure a higher quality of life for lung cancer patients and provide a community for those impacted by lung cancer. It does so by supporting critical research into the early detection and successful treatment of lung cancer, as well as by providing information, resources and a support community to patients and caregivers. LUNGevity seeks to inspire the nation to commit to ending lung cancer. For more information about the grants or LUNGevity Foundation, please visit http://www.lungevity.org. About Lung Cancer 1 in 14 Americans is diagnosed with lung cancer in their lifetime 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 About 55% of all new lung cancer diagnoses are among people who have never smoked or are former smokers Only 16% 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 dramatically

The PointBreak Trial: Boiling results down to four key points. September 8th, 2012 - by Dr. Jack West http://blog.lungevity.org/2012/09/08/pointbreak/ This year at the 2012 Chicago Multidisciplinary Symposium in Thoracic Oncology that’s just ending, one bit of new information was the presentation of the long-awaited PointBreak study. Specifically, the trial pitted Alimta (pemetrexed)-based first line and maintenance chemo against the well-established standard first line and maintenance therapy regimen. It randomized 939 first line advanced non-squamous NSCLC patients either 4 cycles of the “Patel regimen” of carboplatin/Alimta/Avastin (bevacizumab) followed by maintenance Alimta/Avastin (as studied in the early study, led by Dr. Jyoti Patel, that piloted the combination) or 4 cycles of the “Sandler regimen” from the ECOG 4599 trial that established the superior survival for this strategy over chemo alone, of carbo/Taxol (paclitaxel)/Avastin followed by maintenance Avastin. The primary objective of the trial was to demonstrate significant superiority in terms of overall survival (OS) for the Patel regimen with Alimta compared with the Sandler regimen with Taxol. While the trial failed in that regard, it did provide what I would consider to be four valuable conclusions. 1) Patients did marginally better on the Patel regimen while they were receiving first line therapy. I don’t want to overstate it, because the differences are truly minimal, but as you can see from the curves below, the progression-free survival (PFS) is a little better for the Alimta-based regimen. Admittedly, however, with a median PFS difference of two weeks (6.0 vs. 5.6 months, hazard ratio 0.83) and really no difference in objective response rate (34% vs. 33%), I wouldn’t go so far as to call this a clinically significant difference. 2) Overall survival was completely overlapping between the two regimens. As shown in the figure below, the OS curves for the two arms travel together and just cross over each other multiple times. One may beat the other numerically at a single point in time, but the only trend is that they really travel together. 3) Despite the widely held perspective that the Alimta-based chemo combination is especially well-tolerated, the side effect profiles of the two regimens also didn’t demonstrate a clear winner. In my mind, even without showing a significant survival difference, I would say that the Alimta arm could have demonstrated some superiority for showing equivalent efficacy with notably lower side effects. That didn’t happen. As expected, there was more neuropathy and hair loss with Taxol, but the Alimta arm showed a little more of a drop in blood counts with Alimta. Overall, even the side effect profiles appeared more similar than different and failed to declare a “secondary winner” 4) You can make the argument that the Alimta/Avastin combination was superior to Avastin alone in the maintenance therapy component of the trial. In keeping with the results from the AVAPERL trial that revealed significantly superior PFS (and OS not reported out yet) for maintenance Alimta/Avastin vs. Avastin alone after first line cisplatin/Alimta/Avastin, both PFS and OS are longer (by 1.7 and 2.0 months, respectively) when restricting our review of results only to the 63% of patients who went on to maintenance therapy (the others dropping off because of progression, prohibitive side effects, or other complications), as shown in the figures below. This was a pre-specified question that the investigators wanted to address, though it wasn’t the main question of the trial. In real life, when we’re making recommendations about what treatment to start with, we can’t know which patients will do well through first line chemo and which ones won’t. Despite the difference in efficacy of maintenance therapy, at the end of the day, there wasn’t a significant difference in overall survival when you add in the patients who dropped off before maintenance. And then, there is an equalizing effect from post-trial subsequent therapies, though less than 2/3 of patients received further therapy, when these are patients we’d have really generally hoped and expected should have received further treatment (in trial after trial, we consistently see fewer patients received with second line and later systemic therapy than oncologists believe they’re treating). Patients assigned to the Alimta arm were significantly more likely to get Taxotere (docetaxel) afterward, and patients assigned to the Taxol arm were significantly more likely to get Alimta afterward (as you’d expect). So what does it all mean, at the end of the day? Over the past few years, many lung cancer experts (including this one) have tended to favor carbo/Alimta/Avastin over the established ECOG 4599 trial regimen because we felt it was extremely likely to be at least as good if not significantly better than the carbo/Taxol/Avastin regimen. Indeed, it was just as good, but the PointBreak trial disabuses us of the notion that it might be significantly better, even with the advantage of giving what truly appears to be a more effective maintenance therapy with the Alimta/Avastin combination. At the same time, many of us who treat lung cancer patients every time might have estimated that there would be significant advantage in terms of side effects for the Alimta regimen compared with the Taxol regimen. The actual evidence doesn’t support that conclusion either. With the dust settling now, I’d say that the PointBreak trial leaves us with the idea that it’s appropriate to continue to do exactly what you’ve been inclined to do. Some people will value the Alimta regimen because of the much lower risk of neuropathy and hair loss, while others will favor Taxol as being well established, considerably less expensive, and achieving results completely comparable to the carbo/Alimta/Avastin regimen overall. You can make a good argument that for patients who get as far as the maintenance portion, patients are better served by the Alimta/Avastin combination than Avastin alone, and that remains my preference, though we can also look forward to getting a more direct test of maintenance therapy strategies from the ongoing important ECOG 5508 trial. I think a leading question now is whether insurers will use the results to justify refusing to pay for the more expensive Patel regimen when the evidence indicates that patients can experience the same survival with the less expensive Sandler regimen. We’ll have to see how our pre-authorizations change in the next few months. Do these results lead you to feel comfortable with either regimen, or do you clearly favor one? If you had to pay more to receive the Alimta-based regimen, would you accept a significant co-payment to cover the difference?

Celebrating 6 Years of LIFE September 7th, 2012 - by admin by Lois Green http://blog.lungevity.org/2012/09/07/ce ... s-of-life/ I am a runner and I diagnosed with lung cancer in 2006. I didn’t have any risk factors. I was relatively young and healthy and by sheer luck at a company health fair I was encouraged to see a specialist for my asthma. The rest is history. The year that followed my lung surgery was EPIC!!! The support from my friends, family and colleagues was OVER THE TOP! The letters I received are treasures etched in my heart forever. I ran my next marathon 9 months after surgery with my daughter Tara at my side through every mile. We raised $20,000 for LLS. That was incredible! But not everyone is as lucky as I was to have found their lung cancer in its earliest stage, or have the support from friends and family during their cancer experience. Lung cancer impacts one in 14 Americans and kills more than breast, prostate, colorectal and pancreatic cancers combined. Currently, only 16% of people diagnosed with lung cancer survive 5 years post-diagnosis, a percentage significantly lower than that for each of these other cancers. While colon, breast, and prostate cancer all have reliable early detection tests, lung cancer does not. About 55% of all new lung cancer diagnoses are among people who have never smoked. I was one of them. Lung cancer claims approximately 160,000 lives per year. Less than $2,000 of Federal research dollars are spent for every lung cancer death, compared with $25,000 for breast cancer and $12,000 for prostate cancer. The media focuses on a variety of cancers, but often overlook lung cancer because of the stigma associated with the disease. Many people think that smokers should know better and expect related health problems when they smoke. As a nation we don’t give enough attention to lung cancer treatment and prevention. And the public should know that never smokers get lung cancer too. Anyone with lungs can get it, like me. Earlier this year I attended a friends dinner party where I was among several doctors and their spouses. We had finished dinner so I excused myself from the table to indulge in the variety of desserts only to discover on my return that I was the topic of conversation for being a lung cancer survivor and a runner. The doctor sitting next to me turned and said “You’re a lung cancer survivor? That is amazing because when most people are diagnosed with lung cancer it is already too late.” That moment raises an emotion in me, and I am reminded of how lucky I am. On May 4, 2012, I attended the annual HOPE Summit for LUNGevity in Washington D.C. On arrival we meet with everyone we bonded with from last year and it is more exciting when we learned the attending lung cancer survivors has tripled in attendance this year! The HOPE Summit Agenda is always packed with fascinating people and events. The second morning of the summit I entered the conference room and “HOPEtastic” was everywhere. Survivors who have written books had brought copies to share. Keynote speakers shared their incredible stories, research doctors educated us on many topics, and media were there to video personal testimonies. Randall Broad, Author and stage III lung cancer survivor reminded us all that “It’s An Extraordinary Life..Don’t Miss It”. There wasn’t a dry eye in the room when Randy told his story. Jorge Gonzalez was 47 when he was diagnosed with stage III lung cancer on May 28, 2011. He was young, relatively healthy and a non smoker without risk factors. He is married with two daughters and treasures the time with his family. Jorge says, “The biggest fear I had when I was diagnosed was over my family. I didn’t know what to do so I made arrangements, I wanted to make sure things were taken care of incase I didn’t survive this.” But he did. “Everyday above ground is a good day.” Then there was Sara Ratzenberger, who arrived in a wheel chair with an iv and nasal cannula for added oxygen. Nothing was going to stop this brave little girl, young lady, from attending the HOPE Summit. Sara came with every ounce of determination. She is stage 4, 1.5 year Survivor. When I see Sara on Facebook, she is pure Sunshine and lives every day to the fullest. Sara is pretty with blonde hair, blue hair (for LUNGevity) or sometimes very little hair. We all love Sara. When I am less motivated to run, I peek in on Sara and I have sudden purpose. Sara recently had a second thoracotomy. I recall the tender moment after my surgery, when I could barely open my eyes. My Dad, (who was a smoker) came in my room alone and placed his hand on mine over the iv and said “I hope I didn’t do this to you”. “No Dad, you didn’t.” People!! This is NOT a smoker’s disease. Lung cancer does not discriminate. I cannot fathom a second thoracotomy. I had a pity party when my ICU nurse assisted me out of bed for my first walk on the metal walker. With lines/tubes extended from neck, my arm, my waste, and my back, I sobbed in those first steps until my nurse *Mary* said “Lois, you will run again”. When HOPE Summit concluded our cup runneth over with friendship, renewed spirit and Hope. I didn’t write a book. I wasn’t a keynote speaker. I didn’t arrive in a wheel chair. I never had chemotherapy or radiation. My dear friend who I worked with in the East Greenbush plant is going through chemo right now. I asked him to describe chemo to me. The list was long and he concluded with “Lois, I’m going to be a survivor like you.” Our survival inspires others and gives other’s Hope too! On November 4, 2012, I am running the New York City Marathon with my daughter Tara and my dear friend Jenny Lee. We are representing The LUNGevity Foundation. LUNGevity is the largest lung cancer nonprofit funding research into early detection and effective treatments of the disease. Our fundraising commitment is $8,000. The President of LUNGevity, Andrea Ferris, personally invited me to their first entry in the NYC marathon. Our mission is to raise awareness that LUNG CANCER IS THE NO. 1 CANCER KILLER and if it can happen to me, it can happen to anyone. I’m not a loyal sports fan. I have my favorite teams, but when the event is near I always find myself routing for the under dog. This is how I feel about LUNGevity. I have been given the platform to raise the awareness NOW.. LUNGevity’s mission is to improve survival rates and promising research for early detection. That will save lives! Will you join me in the fight against lung cancer? Every step is a step closer to a cure. I believe in you…Thank you to my friends, family and supporters (and LUNGevity!) for believing in me. Lung cancer didn’t just happen to me. I believe it happened for me -so that maybe I can make a difference against this disease and for others. With LUNGevity, I have HOPE. August 31, 2012, I celebrated LIFE and 6 years of being lung cancer free! Please celebrate with me by showing your support of lung cancer research. Please donate http://events.lungevity.org/goto/teamgreen