4/18/2013 The Bonnie J. Addario Lung Cancer Foundation Announces Partnership with Smart Patients to Launch New Online Community for Lung Cancer PatientsRead NowSOURCE: Bonnie J. Addario Lung Cancer Fndtn New platform will allow patients to learn from each other, share reliable information farther and faster than ever before SAN 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:
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 Foundation The 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 Patients Smart 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.com
People 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 People Surrounding 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 You Lung 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 Yourself Believing 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 Defensive Fighting 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 Relaxation Some 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 Ignorant Sometimes 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 Humor When 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 Comebacks My 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 Forgiveness Many 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 forEGFR 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:
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. Primary source: Journal of Thoracic Oncology
Source reference: Lindeman NI et al. "Molecular testing guideline for selection of lung cancer patients for EGFR and ALK tyrosine kinase inhibitors: Guideline from the College of American Pathologists, International Association for the Study of Lung Cancer, and Association for Molecular Pathology" J Thorac Oncol 2013; DOI: 10.1097/JTO.0bO13ee318290868f. |
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