Copyright 2013 About.com. A diagnosis of cancer is like being immersed in a foreign language camp you don't remember enrolling in. And that was in the past. As advances are made in lung cancer treatment, a whole new array of concepts and terms comes to light. You may have heard of terms such as EGFR and ALK, perhaps even KRAS... Thankfully this "new" language is worth learning about, and we're fortunate to have people like Bonnie Addario who have set out to make the education process easier. The most significant advances in lung cancer treatment - treatments that have actually budged the survival rate for some people in the last decade - have a lot to do with targeting genetic mutations in cancer cells. What's really exciting is that not only have these treatments improved survival for some people, but they're designed specifically for your type of tumor. It's interesting that cold hard science is reminding us of what we often forget in medicine - that everyone is unique and special. On Tuesday, May 21, 2013 you are invited to join the Lung Cancer Living Room to learn more. Sponsored by the Bonnie J. Addario Lung Cancer Foundation, the Living Room is a monthly support group (meeting on the 3rd Tuesday of the month) that covers topics that people with lung cancer are interested in learning about - in addition to being a place where you are not alone as you live with lung cancer. You can take part from your own living room on your laptop, or attend the group in person at the headquarters in San Carlos, California. The date: Tuesday, May 21, 2013 The time: 5:30 PM Pacific Standard Time Guest speaker: Paul Billings, MD, PhD. Dr. Billings is a physician, lecturer, professor, and consultant on genetic information. He will be discussing the road map towards precision medicine, and the role of Next Generation Sequencing and what it means to someone diagnosed with lung cancer. A concept that might be helpful to understand before tuning in is that there are many types of lung cancer. If I were to talk with 70 people with lung cancer, they would have 70 different types of lung cancer. Everyone has different mutations present in their cancer cells. And targeting these abnormalities not only hits the mark better, but does so without many of the dreaded side effects of chemotherapy. It can also help a little to understand exactly what a cancer cell is - and why they are so hard to get rid of. A difficult-to-understand concept is that cancer is caused by not just one mutation, but a series of mutations. There are often mutations that result in cells continuing to grow and divide when they shouldn't. There are often mutations in proteins that tell cells to stop growing. There are also often mutations in genes that code for proteins that tell cells to die (a process called apoptosis.) At the risk of being overly simplistic, the excitement over genetic sequencing is that these mutations can be discovered and overcome with new therapies. Example of medications that work in this way include Tarceva (erlotinib) and Xalkori (crizitonib.) If you're interested in learning more about the mutations and abnormalities in cancer cells - and hence, the approach that new medications are taking to treat it, check out: I hope you'll get the chance to take part in this wonderful opportunity. I'm very excited myself to hear the latest in treatments that can be tailored for those I care so deeply for with lung cancer.
The Lung Cancer Living Room welcomes Paul Billings, MD, PhD as their guest speaker on May 21, 2013. Dr. Billings is a physician, lecturer, researcher, professor, and consultant on genetic information. He will be discussing the road map towards precision medicine and the role of Next Generation Sequencing and what it means to someone diagnosed with Lung Cancer. For more information on Dr. Billings CLICK HEREIts going to be another great night, so BJALCF hopes to see you in person or online via Ustream: http://www.ustream.tv/channel/the-lung-cancer-living-room-support-groupFor more information CLICK HERE or contact Danielle Hicks at danielle@lungcancerfoundation.org or (650) 598- 2857. Living Room Partners
 SOURCE: Bonnie J. Addario Lung Cancer FndtnNew platform will allow patients to learn from each other, share reliable information farther and faster than ever beforeSAN CARLOS, Calif., April 18, 2013 /PRNewswire-USNewswire/ -- Today, the Bonnie J. Addario Lung Cancer Foundation (LCF) announces its partnership with Smart Patients, who today launched a free online community for cancer patients, caregivers and others to talk about treatments, clinical trials, and more. The partnership has one purpose – to empower patients. "Patients hold the key to unlocking the genetic code to curing lung cancer, so we're extremely excited to partner with this first-of-its-kind, easy way for patients and doctors to connect online," said Bonnie J. Addario, a stage 3B lung cancer survivor and founder of the Bonnie J. Addario Lung Cancer Foundation. "The partnership embodies one of our driving principles: empowered patients live longer."The LCF truly believes that educated and empowered patients live longer and offers three key patient programs: - The LCF's new Patient Handbook will help guide and empower those living with lung cancer.
- The Patient 360 Community Hospital Program is a patient-centric model created to ensure that every patient with this serious disease has access to the newest and most effective diagnostic and therapeutic techniques.
- The Living Room, an interactive, live-streamed support group for lung cancer patients and their families, brings the brightest minds in cancer research into homes around the world.
One of the founders of Smart Patients, Roni Zeiger, M.D., the former Chief Health Strategist at Google, will speak further about the online community at the LCF's Living Room support group in June. Today, Zeiger also announced the launch of Smart Patients at TEDMED conference in Washington D.C. "The Lung Cancer Foundation has been an early partner and is helping to seed the community where science meets social," said Roni Zeiger, Founder Smart Patients. "We're excited to provide a platform where the patient's voice is central and we can learn from their insights to move science forward even faster." About the Bonnie J. Addario Lung Cancer FoundationThe Bonnie J. Addario Lung Cancer Foundation is one of the largest philanthropies (patient-founded, patient-focused, and patient-driven) devoted exclusively to eradicating Lung Cancer through research, early detection, education, and treatment. The Foundation works with a diverse group of physicians, organizations, industry partners, individuals, survivors, and their families to identify solutions and make timely and meaningful change. BJALCF was established on March 1, 2006 as a 501c(3) non-profit organization and has raised more than $10 million for lung cancer research. To learn more, please visit www.lungcancerfoundation.org. About Smart PatientsSmart Patients is an online community for cancer patients and caregivers. The community includes a clinical trial search engine that presents trial data from ClinicalTrials.gov in a patient-friendly format. The community platform has been in private beta testing since January 2013 and is now open to all cancer patients and caregivers. To learn more visit us at www.smartpatients.com.©2012 PR Newswire. All Rights Reserved.
by Lynne Eldridge MD, reprinted from About.comPeople can make insensitive comments to anyone suffering from an illness, but the stigma of lung cancer opens an extra door of vulnerability for those going through lung cancer treatment. “I didn’t know you were a closet smoker.” “My cousin Bill had lung cancer and he died.” Most of the time, people make these comments innocently without thinking; they don’t know what to say, are voicing their own fears about developing lung cancer, or are simply ignorant about the disease. Once in awhile, we encounter people that truly lack empathy or are downright rude. Going through cancer treatment is a challenge enough, without adding the stress and hurt feelings that can come as a result insensitive comments. What can you do to minimize the impact of these remarks as you go through lung cancer treatment? Surround Yourself With Supportive PeopleSurrounding yourself with loving, non-judgmental people is the first step in handling insensitive comments. People that know your situation well, can empathize, and provide unconditional support, help you focus on your treatment. Those who are less familiar with your illness or your methods of coping are less likely to respond in a way that nourishes your spirit. Have a Spokesperson That Can Speak For YouLung cancer treatment can be tiring, and the last thing on your list might be trying to figure out how to deal with insensitive comments. Talk openly with your loved ones ahead of time, anticipating less than supportive remarks that may come your way. Your loved ones can then shelter you by responding in a fashion that answers those comments, without starting a series of questions in your own mind. “There are many causes of lung cancer.” "I am sorry your cousin died from lung cancer but we are very optimistic that the treatment Jim has chosen will be effective, and could really use your prayers and support.” Pamper YourselfBelieving in, and loving yourself can head off many comments before they ever occur. When others see you fighting your cancer they are more likely to encourage you in your treatment. If they see you blaming yourself, they are more likely to join the cause and add to the blame. Nourish your own self-respect. If you don’t appear to be questioning what you could have done to prevent your cancer, or what will happen tomorrow, others might be less likely to make a comment…maybe. Don’t Become DefensiveFighting your lung cancer requires your energy now. Don’t allow hurtful comments from others to drag you down and put you in a defensive mode. Some comments may be deserving of an honest response, and possibly even a response that the remark was hurtful, but don’t set yourself up for a debate on what you might have done differently in the past. We can’t change the past, but we can focus on present treatment. If the Comment Lingers in Your Thoughts, Try RelaxationSome people find self-affirmation helpful as a method to build them up and get past the pain of insensitive comments. Relaxation techniques can return your focus to what is important –- maximizing the results of your treatment. A simple method of relaxation that can be done anywhere is visualization. Educate the IgnorantSometimes it is best to ignore inappropriate comments, or have someone else speak for you. If you feel up to it, the best way to raise awareness and educate the public about lung cancer, is through the words of those who have been living with the disease. Let these individuals know that there are many causes of lung cancer, and that unconditional support is what you really need to fight your disease. Maintain a Sense of HumorWhen you are irritated when someone asks you once again how long you smoked (if you ever did), picture asking him or her a similar question were they diagnosed with cancer. “How long have you been…” Fill in the blank: obese, sedentary, addicted to tanning, obnoxious. Have a Few Snappy ComebacksMy mother always taught me that 2 wrongs don’t make a right, but in the case of a stinging comment or particularly nasty remark, venting your frustration on the source might be just what the doctor ordered. Having a few snappy comebacks may help you dismiss some of these remarks before they penetrate your thoughts and leave you fuming silently. In response to a comment about smoking to a lung cancer patient, our About.com guide to surgery actually heard someone say “Why thank you, I didn’t know smoking could cause cancer, thank you for telling me, now I know I deserve cancer!” Practice ForgivenessMany of those insensitive comments that fester in your mind, have already left the mind of the deliverer. Don’t dwell on them. Address the remark, ignore it, or whatever, but let it go and forgive the one that was insensitive. Unresolved resentment won’t change the one that shared the comment, it will only poison you.
 Originally published at medpagetoday.com by Charles Bankhead, Staff Writer, MedPage Today on April 05, 2013.
Reviewed by Robert Jasmer, MD; Associate Clinical Professor of Medicine, University of California, San Francisco and Dorothy Caputo, MA, BSN, RN, Nurse Planner
 All patients with advanced lung adenocarcinoma should undergo testing for EGFR and ALK mutations to determine their eligibility for targeted therapies, according to a jointly developed guideline from three organizations. Patients should undergo EGFR testing at diagnosis of advanced disease or at recurrence or progression if they were not tested at earlier disease stages. ALKrearrangement testing is suggested by the International Association for the Study of Lung Cancer, the College of American Pathologists, and the Association for Molecular Pathology. Patients should not be excluded from testing because of smoking status or clinical characteristics, the guideline authors said in an article published online in the Journal of Thoracic Oncology. "It was recognized by each of these three organizations that there was a gap in knowledge, a gap in communication, and variance around the world in how this testing ought to be done," first author Neil I. Lindeman, MD, a pathologist at Brigham & Women's Hospital in Boston, said in video statement. "We decided collectively ... that these three voices should come together in order to make a consensus guideline." The consensus opinion of the guideline panel is that EGFR and ALK testing should be encouraged for patients with stage I, II, or III disease at diagnosis. EGFR testing should have priority over all other genes, followed by ALK. "Any oncologist should be able to provide this testing and should do this testing to give their patients optimal care," Gregory Riely, MD, a medical oncologist at Memorial Sloan-Kettering Cancer Center in New York city, said in the video. "With a proper biomarker, I can tell patients that they have a 70% to 80% chance of responding to a treatment rather than saying that they have a 1 in 10 chance of responding to treatment," he added. Other points made in the guideline include: - Primary and metastatic lesions are equally suitable for testin
- Test results should be available within 10 working days and labs that cannot keep that turnaround schedule should take steps to keep the schedule -- either in-house or at a reference lab (consensus)
- KRAS testing should not be used as the sole determinant of a patient's eligibility for anti-EGFR therapy
- Specimens from patients with acquired resistance to EGFR inhibitors can be tested for the secondary EGFR T790M mutation with as few as 5% of specimen cells
- Reverse transcriptase polymerase chain reaction is not recommended as an alternative to fluorescence in situ hybridization assay for selecting patients for ALK inhibitor therapy
- In the setting of fully excised lung cancer specimens, EGFR and ALK testing is not recommended in lung cancers that lack any adenocarcinoma component, such as "pure" squamous cell carcinomas, "pure" small cell carcinomas, or large cell carcinomas lacking any immunohistochemistry (IHC) evidence of adenocarcinoma differentiation.
The guideline addresses a variety of other issues related to testing techniques and processes, quality control, testing for secondary mutations and for other genes, and reporting results.The broad recommendations for testing and the guideline's emphasis on urgency in obtaining test results reflect practices already in place at leading cancer centers, according to Edward Kim, MD, of Carolinas HealthCare System's Levine Cancer Institute in Charlotte, N.C. "Testing should be based on type of patient (i.e. histology) and not clinical characteristics (i.e. smoking status or ethnicity)," said Kim, who was not involved in writing the guideline. "Both tests ( EGFR and ALK) are recommended to be ordered at diagnosis, which is our current practice at Levine Cancer Institute. "Although 'within 2 weeks' for results is recommended, I hope that the turnaround time can be shortened in the near future. Patients with lung cancer are anxious to begin therapy, and longer delays will preclude the use of these molecular agents in the front-line setting."
The guideline authors disclosed relationships with Novartis, Millennium, Arqule/Daiichi Sankyo, NanoString, Genzyme, Infinity, Sequenom, Remedica Medical Education, Abbott, Existence Genetics, CymoGen Dx, Applied Spectral Imaging, Parteq-Queen's Commercialization Office, Merck, Eli Lilly, Pfizer, OSI/Genentech/Roche, AstraZeneca, Boehringer Ingelheim, Amgen, GlaxoSmithKline, Bristol-Myers Squibb, and sanofi-aventis. Several authors disclosed royalties related to publications and fees received as expert witnesses.
T he Joan Gaeta Lung Cancer Fund congratulates Big Daddy's Race for Time and everyone in Kentucky responsible for making this a reality in their state! The following was originally published by Alan Lytle at WUKY.org on 3/27/13.  LEXINGTON, Ky. - Kentucky motorists will soon be able to demonstrate support for lung cancer research and education by buying a specialty license plate. A new “Fighting Lung Cancer” tag has been approved for pre-sale and should be available by early 2014. Lung cancer is the leading cause of cancer deaths both in Kentucky and the nation, according to Renae Feistritzer Ellis, president of the non-profit group, Big Daddy’s Race for Time.“It surpasses prostate cancer, breast cancer…I mean it’s a huge killer and it’s kind of a silent killer because there’s just not a lot of information out there about it.” Feistritzer Elllis created Big Daddy’s Race For Time, to honor her late father. “Upon his death we created the foundation and all of our money goes right back into Kentucky. We’ve worked closely with the Kentucky Research program with the Markey Cancer Center. That’s where our funds have gone to the last five years. We meet with some doctors and we ask what research efforts they’re doing and we actually pick which research, clinical trials that we want our money go towards.” 900 of the license plates will need to be pre-ordered at $25 each before the design can be sent to production. You can pre-order yours at http://www.bigdaddysrace.org/licenseplate/
In his second visit to the Lung Cancer Living Room, Dr. David Gandara of UC Davis Comprehensive Cancer Center, discusses how your cancer is unique and that your approach to treating it should be too. He talks about discovering your 'molecular fingerprint' and how that information will help guide you through your unique cancer 'journey'. He also talks about some of the latest findings regarding "Tumor Darwinism"- how your cancer's molecular signature can evolve over time, as well as some of the latest research funded by the Bonnie J. Addario Lung Cancer Foundation using mouse models to test new forms of treatment. He closes with a discussion of the importance of getting involved in clinical trials. The bottom line he says is that empowered patients live longer. It is a visit filled with lots of useful detailed information, and a clear message of hope and progress. Learn more about The Lung Cancer Living Room here.
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