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NikoleV

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Posts posted by NikoleV

  1. LUNGevity Foundation Joins Together with the Women Survivor Alliance to Empower Women Impacted by Lung Cancer

    FOR IMMEDIATE RELEASE

    Media Contact:

    Sara Neumann

    sneumann@susandavis.com

    (202) 414-0788

    http://events.lungevity.org/site/PageNa ... 53113.html

    Famed country artist Martina McBride will help salute and celebrate

    women cancer survivors

    WASHINGTON, DC (May 31, 2013) – LUNGevity Foundation, the nation’s largest lung cancer-focused nonprofit, is proud to join together with The Women Survivors Alliance in an effort to empower, educate and connect women who have been touched by cancer and represent those who have been impacted by lung cancer.

    The Women Survivors Alliance (WSA) will host its inaugural event, the nation’s premier National Women’s Survivors Convention, founded by Karen Shayne, this August 22-24, 2013 at the Gaylord Opryland Resort and Convention Center in Nashville, TN. Details on the conference can be found here.

    This one-of-a-kind, high energy and entertaining experience for women survivors of all ages, all stages and all types of cancers and their caregivers offers a program of interactive workshops, keynotes, networking with other survivors, a special track for younger survivors (ages 18-35), a Survivors Marketplace Expo, head-to-toe makeovers, a 5K walk/run, spa experiences, individual empowerment sessions/demonstrations, and a celebrity concert finale. Events surrounding the conference include a national cancer survivor life makeover contest, fashion show and survivor home makeover.

    Famed country artist Martina McBride will join with other special musical guests to help salute and celebrate women cancer survivors at the famed Grand Ole Opry on Saturday night, August 24, 2013.

    LUNGevity special guest and lung cancer survivor, Jill Feldman, will share her story at the convention. See Jill’s story here.

    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 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.

  2. LUNGevity Foundation Hosts Second Annual Ping Pong Tournament

    FOR IMMEDIATE RELEASE

    Media Contact:

    Sara Neumann

    sneumann@susandavis.com

    (202) 414-0788

    http://events.lungevity.org/site/PageNa ... 52013.html

    Join the fun and take a slice out of lung cancer at New York’s SPiN Galactic!

    NEW YORK (May 20, 2013) – For the second year, LUNGevity Foundation, the nation’s largest lung cancer-focused nonprofit, will host a unique evening of ping pong to raise money for lung cancer at SPiN Galactic in New York City on June 5, 2013. The fun-filled event is being chaired by Shannon Broder, Don McDonough, Lizzie McDonough, John Rigos, Erin Stern, and Andrew Stern.

    Help stop lung cancer! Join LUNGevity for a fun evening of ping pong, friendly competition, networking and most importantly an opportunity to raise funds for lung cancer research.

    To learn more and to register, go to: www.lungevity.org/spin

    WHAT: LUNGevity’s Ping Pong Tournament

    WHEN: June 5, 2013

    7:00 p.m. – 10:00 p.m.

    WHERE: SPiN Galactic New York

    48 East 23rd Street

    New York, NY 10010

    For questions about the event, tickets and sponsorships, please contact Anna Pugh at spin@lungevity.org.

    LUNGevity has the largest grants award program for lung cancer research among lung cancer nonprofit organizations in the United States funding 92 projects at 54 institutions in 23 states. LUNGevity has awarded over $5 million to promising lung cancer research proposals in the areas of early detection and targeted therapeutics in the last two years alone. To help support its mission and raise awareness of the disease, the organization hosts over 75 community-building and fundraising events across the country each year.

    Sponsors of the Tournament include Centerview Partners, Jones Lang LaSalle and Genentech.

    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 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.

  3. Dr. Kratz Webinar Conclusion: New Evidence Supporting a Potential Biology-Based Staging System for NSCLC

    May 23rd, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/05 ... c-staging/

    Here’s the third of 3 parts of the webinar by Dr. Kratz. He describes some of the work he and his group have done that supports the value of a gene signature-based test to estimate risk of recurrence in stage I NSCLC. In addition, he then proposes a potential way to integrate this information into a staging system for NSCLC that can help refine prognosis and identify patients who might be especially well served to pursue additional treatment after surgery.

    (Click link above to view the video links below)

    Kratz Pt 3 Evidence Favoring Biological Staging Video Podcast

    Kratz Pt 3 Evidence Favoring Biological Staging Audio Podcast

    Kratz Pt 3 Evidence Favoring Biological Staging Transcript

    Kratz Pt 3 Evidence Favoring Biological Staging Figures

    Apologies for the difficulty with the audio — we definitely wanted to include a transcript for this one, given the technical nature of some of the presentation, and the muffled sound in some of it. Still, I hope it’s a helpful, interesting webinar topic for people.

  4. Dr. Kratz introduces the concept of molecular staging of early lung cancer

    May 23rd, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/05 ... ng-cancer/

    Here are the first two parts (out of three) of the webinar in the end of 2012 done by Dr. Johannes Kratz, surgical fellow at Massachusetts General Hospital in Boston, who was a leader of a very influential study that supports the potential utility of archived tissue from surgery to help clarify whether patients with a resected stage I NSCLC may have a higher or lower risk of a good long-term outcome based on genetic features of their cancer. While clinical stage, based on the size of the main cancer and pattern of spread, have historically guided our treatment recommendations and estimates of prognosis, we also know that cancers of comparable size and clinical stage can vary greatly in how they behave. This must be based on biological differences, and the work that Dr. Kratz describes is a significant effort in allowing us to get a sense of that biology without requiring frozen tissue from surgery, which is a significant technical barrier.

    Here are the audio and video versions of the first two parts of his presentation, with the figures. (Click link above to view the video links)

    Kratz Pt 1 Defining Value of Molec Staging Video Podcast

    Kratz Pt 1 Defining Value of Molec Staging Audio Podcast

    Kratz Pt 1 Defining Value of Molec Staging Transcript

    Kratz Pt 1 Defining Value of Molec Staging Figures

    Kratz Pt 2 Early Steps in Molec Defined Prognosis Video Podcast

    Kratz Pt 2 Early Steps in Molec Defined Prognosis Audio Podcast

    Kratz Pt 2 Early Steps in Molec Defined Prognosis Transcript

    Kratz Pt 2 Early Steps in Molec Defined Prognosis Figures

    We’ll have the transcripts up here very soon, and the last podcast, which describes the recent work Dr. Kratz and colleagues have been doing in this field, is being edited now. I’ll plan to have that up here within the next few days.

  5. Who are the key members of your lung cancer care team?

    May 10th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/05 ... care-team/

    There are many overwhelming aspects to a new diagnosis of lung cancer. One of those is the sheer number of people who may need to become involved in your care. Many people may have little or no idea what the various specialists do, or why it’s often necessary to see many different people. But lung cancer management is becoming more and more “multi-disciplinary”, which means that it’s valuable to have input from many different people with complementary skill sets. Though the team may vary based on the health care system you’re in, here’s a primer on the key components of the care team for many people with lung cancer:

    Primary care physician (PCP): Of course, you know what a primary care physician does in general, but in the context of lung cancer, they are often the first person learning of a suspicious finding on an imaging study like a chest x-ray or CT scan. These studies are often done in the workup by the PCP of symptoms like shortness of breath, non-exertional chest pain, a persistent cough, or maybe just weight loss and weakness. Once a concerning finding is detected, the PCP may refer a person to interventional radiology for a CT-guided biopsy, or alternatively to a specialist like a pulmonologist or thoracic surgeon to obtain a definitive diagnosis. What is their role after the diagnosis? It depends on the situation. Sometimes, they remain involved because of a strong relationship built over years, and they may continue to manage other medical issues beyond the cancer, but it’s also common for their role to become less prominent if the lung cancer becomes the medical issue that dominates the picture.

    Radiologist: Radiologists read imaging studies, ranging from chest x-rays to CT scans to PET scans, MRIs, etc. They are involved from the time of identifying the initial disease before diagnosis to the ongoing follow-up of patients to monitor response to treatments given over time. There are often different subspecialists in various aspects of radiology, so the person who does a lot of the reading of body imaging studies may be different from the person who reads head imaging. People who read PET scans and bone scans may have a particular expertise in these modalities. And then there is interventional radiology, with specialists who have specific training to serve a role that can be closely akin to a surgeon (at least within the realm of minor surgeries), doing biopsies of nodules directed by CT or other imaging studies, implanting catheters, and various other procedures that may be needed.

    Pulmonologist: A specialist in lung disease (cancer or benign), a pulmonologist is often the specialist who evaluates a new, concerning lung nodule or mass to obtain a diagnosis. They assess the probability that a lung finding represents infection, inflammation, cancer, or some other issue, and they may recommend nothing more than repeat imaging after a time interval if a nodule is relatively small and not too suspicious, or they may favor obtaining a tissue diagnosis. They will often do a bronchoscopy, which is a procedure in which they navigate a small camera down the airway and potentially take biopsies of different areas to obtain a tissue diagnosis. Some pulmonologists are more “interventional” and may do “endoscopic bronchial ultrasound” or EBUS, a procedure in which they can find lymph nodes around the bronchial trial and do biopsies to obtain more accurate staging than scans alone can provide. Interventional pulmonologists may remain involved in the care of people with lung cancer by placing stents in compressed airways or draining pleural fluid from outside of the lung. Pulmonologists may also remain longitudinally involved in the care of lung cancer patients by managing challenging cough, shortness of breath, trying to optimize lung function before or after surgery, radiation, etc.

    Thoracic surgeon (or other surgeon): A thoracic surgeon is a surgeon with a specific training and expertise in lung surgery, which is its own board-certified sub-specialty of general surgery. The surgeon may be involved in the process of making a diagnosis of a lung nodule/mass. They often direct at least the initial part of the staging process and are the pivotal person who provides insight about the feasibility of surgery in someone who appears to have an earlier stage lung cancer. They may do a video-assisted thoracoscopic surgery (VATS), i.e., laparoscopic surgery in the chest, to make a diagnosis or assess whether the pleural space outside of the lung is involved with cancer. They will often do an invasive procedure called a mediastinoscopy to view (again, through a laparoscopic camera) and remove lymph nodes in the mid-chest, behind the sternum, as part of a thorough staging process. Even if curative surgery isn’t feasible, they may do a procedure called a pleurodesis that is its own subject of discussion but is essentially a procedure to treat a recurring pleural effusion. Though the surgeon is often involved primarily in a time-limited fashion at the early part of the management of lung cancer and only “as needed” thereafter, they will often do the long-term follow-up of patients who undergo surgery for an early lung cancer, especially if these people don’t go on to receive post-operative treatment from a medical oncologist.

    The final key point about the surgeon on your team is that there is often a very big difference in outcomes between treatments done by a dedicated, well-trained thoracic surgeon who does high volumes of lung surgeries and a more general cardio-thoracic surgeon or especially general surgeon who typically does fewer lung cancer surgeries. Thoroughness and accuracy of staging, as well as survival from lung cancer, are often far superior for board-certified thoracic surgeons, so it’s often worth finding the best surgeon around, not just the closest one or the one whose schedule is open a few days earlier.

    Pathologist: A pathologist interprets the tissue collected on a biopsy under a microscope. Because a diagnosis of lung cancer can’t really be made with certainty without a biopsy, the pathologist is critical in establishing the diagnosis. In the last decade, their role has become more and more important, as we’ve learned that different subtypes of lung cancer that are established by their appearance under the microscope and a variety of special molecular tests can be important in predicting the behavior of the cancer with or without treatment. The pathologist is typically the specialist coordinating the molecular marker testing for targets such as EGFR mutations and ALK rearrangements that have transformed the management of lung cancer in recent years.

    Medical oncologist: The medical oncologist is a specialist who directs the systemic (whole body) therapies like intravenous chemo or oral targeted therapies, whether given before or after surgery, with radiation, or alone as the primary treatment for advanced lung cancer. In addition, they are typically the specialist who is likened to the “quarterback” of the team of cancer specialists. They will often oversee the symptom management and referral to other specialists as needed, and with the exception of the earlier stage patients noted above and followed primarily by the surgeon over time, the medical oncologist is generally the doctor providing longitudinal care for lung cancer patients.

    Radiation oncologist: The radiation oncologist provides radiation therapy to a specific area as needed by the specific situation. For patients with early stage NSCLC who refuse or are not fit enough to pursue surgery, they often do radiation as a potentially curative alternative. For patients with locally advanced NSCLC or limited stage SCLC, they will typically give radiation to the chest disease concurrent with or sometimes sequentially with a systemic treatment like chemotherapy. Because radiation is typically the recommended approach for brain metastases, they direct this process, whether given as stereotactic radiosurgery for one or a few lesions, or whole brain radiation therapy to broadly treat more extensive metastatic disease throughout the brain. They will often do radiation to painful bone lesions or other metastases that need to be controlled because they are causing local symptoms such as pain, compression of an airway, hemoptysis (coughing up blood), or risk of a fracture of a weight-bearing bone that is structurally compromised by metastatic disease. The radiation oncologist tends to be involved as needed over discrete periods of time, rather than being longitudinally involved in the care of a patient with lung cancer.

    Beyond this list, there are other members of the care team who can be critically important, including patient navigators, nurses with specialized skills, caregivers like a spouse, children, and close friends, and even the online community. But because this list and this post is already quite long, and the availability and role of these other components of the care team are quite variable, I’ll end here and hope that this quick tour is helpful for those people just coming to terms with a bewildering collection of new health care providers to see.

  6. Ask the Experts: How do you approach the question of repeat biopsies for lung cancer?

    May 7th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/05 ... bx-videos/

    At the recent “Targeted Therapies in Lung Cancer” conference in Los Angeles, I had the opportunity to ask several other lung cancer experts about their approach to repeat biopsies for lung cancer, either if a patient doesn’t have enough tissue for molecular testing at initial diagnosis, or in the setting of acquired resistance. What is the benefit? Do they consider it desirable, necessary, or neither? Are there practical barriers, such as insurance coverage, or significant safety concerns? Here are the comments from several experts on the subject:

    (Click link above to view links to each expert below)

    Dr. Heather Wakelee, Stanford Univ, on the question of whether to favor a repeat biopsy at the time of initial diagnosis if a patient has insufficient tissue for molecular testing

    Dr. Karen Reckamp, City of Hope Cancer Center, on recommending repeat biopsies at initial diagnosis or in setting of acquired resistance

    Drs. Ross Camidge, U Colorado, and Corey Langer, U Penn, on when they recommend a repeat biopsy

    Dr. Sarah Goldberg, Yale Univ, on value of repeat biopsies in setting of acquired resistance

  7. Ask the Experts: When Do You Recommend Repeat Biopsies for Advanced NSCLC?

    May 7th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/05 ... repeat-bx/

    At the recent “Targeted Therapies in Lung Cancer” conference in Los Angeles, I had the opportunity to ask several other lung cancer experts about their approach to repeat biopsies for lung cancer, either if a patient doesn’t have enough tissue for molecular testing at initial diagnosis, or in the setting of acquired resistance. What is the benefit? Do they consider it desirable, necessary, or neither? Are there practical barriers, such as insurance coverage, or significant safety concerns? Here are the comments from several experts on the subject:

    (Click link above to view the discussions below)

    Dr. Heather Wakelee, Stanford Univ, on the question of whether to favor a repeat biopsy at the time of initial diagnosis if a patient has insufficient tissue for molecular testing

    Dr. David Spigel, Sarah Cannon Cancer Center, on his approach to recommending a repeat biopsy for patients with insufficient tissue for molecular testing

    Dr. Karen Reckamp, City of Hope Cancer Center, on recommending repeat biopsies at initial diagnosis or in setting of acquired resistance

    Drs. Ross Camidge, U Colorado, and Corey Langer, U Penn, on when they recommend a repeat biopsy

    Dr. Geoffrey Oxnard, Dana Farber Cancer Institute, on insurance coverage issues around repeat biopsies

    Dr. Sarah Goldberg, Yale Univ, on value of repeat biopsies in setting of acquired resistance

    Dr. Greg Riely, Memorial Sloan-Kettering, on the value of repeat biopsies in the setting of acquired resistance

    I hope you find these discussions from multiple different experts helpful as we consider how to approach these still very open questions.

  8. What level of side effects from systemic therapy are acceptable? It depends on the goal of treatment.

    May 3rd, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/05 ... -severity/

    How much “toxicity”, the degree of side effects from treatment, should we accept when treating lung cancer? Of course, a huge amount of that answer depends on a particular person’s sense of what they are willing to accept, but another extremely important factor is the goal and setting of the treatment.

    One of the most important, earliest questions we ask when treating cancer is what the realistic goals of treatment can be. Some patients have early stage cancer that can be treated with surgery and/or various other treatments to produce a reasonable chance of being cured. Other patients may have metastatic disease that is definitely treatable, with a realistic goal of prolonging survival and improving cancer-related symptoms, but we can’t honestly expect our treatments to cure the cancer. And even within the realm of non-curative therapy, some of our treatments are intended to be a limited course of a few cycles/months of treatment, while others may be intended to continue indefinitely, until a patient develops problematic side effects or evidence of significant progression of their disease.

    A key point is that what is “acceptable” side effects is proportional to the potential benefit of treatment. If someone may need a very challenging treatment, such as a difficult surgery or time-limited course of chemo combined with radiation, but there’s a real probability that the therapy will be successful enough to cure the cancer, it’s generally worth trying to press ahead and work through everything that is tolerable over the short term. There’s a potentially big prize at the end, and rigorous treatment may be required to get it.

    But we don’t have people go through heroic, dangerous surgeries or bone marrow transplants for the opportunity to prolong survival by a few weeks or a couple of months, because there is a very high probability that the treatment will be worse than the disease. In terms of advanced lung cancer, we want to ensure that treatments given are tolerable enough for people to be able to eat, ambulate, live their lives, and not suffer too much from what we’re doing to them. We need to pay much closer attention to the balance of benefit vs. risk when we can’t offer a reward of potential cure.

    It has only been in the last 4-5 years that we have begun to routinely treat patients with maintenance therapy, which is a prolonged course of ongoing systemic (whole body, so intravenous or oral) therapy to provide prolonged suppressive effects against the cancer. We couldn’t realistically consider such an idea when our treatments were so challenging that people felt lucky to crawl to the finish after 3-4 months of treatment. But now we have some treatments like Alimta (pemetrexed) chemotherapy or Tarceva (erlotinib) oral targeted therapy that have demonstrated a modest but real benefit as maintenance therapy, which is only feasible because they are also often so well tolerated that people can continue on them for months and months in a row.

    So for our treatments given with palliative intent (which really means “every treatment that isn’t going to be a cure”, and which is often life-prolonging, so palliative isn’t a euphemism for “comfort care with no expectation of survival benefit”), we want to ensure that we offer the best combination of efficacy against the cancer along with tolerability. If our treatment is intended to be for a fixed period of a few treatments followed by a break, it may be justifiable to push a person with a challenging treatment. On the other hand, I see some patients really suffering on maintenance therapy with chemo or Tarceva that they’re barely able to continue on, and which is actually limiting how well they can live while on treatment. That’s undermining one of the critical goals of our treatment, and it should make us step back and consider a break from treatment or cutting back on the dose in order to achieve a better balance of efficacy and tolerability.

    I hope this idea of treatment being a balance of anti-cancer activity and quality of life makes sense, and that the optimal balance should depend on what that treatment might deliver. I welcome any questions or comments you might have.

  9. “What should I do? I’m in pain, but I don’t want to take narcotics, because I’m afraid I’ll become addicted.”

    April 24th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/04 ... addiction/

    Unfortunately, pain is a common symptom of many cancers, including lung cancer. But perhaps what is more important is that far too many people with cancer suffer needlessly from pain because they, their family members, and/or their doctors are wary about them taking opioid medications like morphine, oxycodone, etc., out of a fear that these will cause the person to become addicted. Pain medication is a complex issue, but there are a few important points for people to be aware of to ensure that patients are as comfortable as they can be.

    First, pain doesn’t fight cancer. There is nothing noble about suffering with cancer pain if it can be relieved effectively. Sometimes focal radiation will help with pain, sometimes non-opioid medications like Tylenol (acetaminophen) or NSAIDs like ibuprofen will do the job, but many patients have enough pain, in various parts of their body, that stronger, opioid pain medications are very, very appropriate and may be by far the most effective way to manage cancer pain.

    Second, needing pain medication doesn’t make someone an addict. Even if they need pain medication for a long time, perhaps forever, this doesn’t mean that a person can’t function well with pain medication, and this dependence on opioids should be distinguished from addiction, which is an inappropriate use of a drug. People may also require higher doses of opioids over time to achieve the same effect, due to tolerance, but this also isn’t the same as addiction. Instead, I would consider it most analogous to think of appropriate use of opioid pain medication like a person with diabetes being dependent on insulin, or someone with hypothyroidism depending on thyroxine as thyroid replacement: these are needed for a person to function, but their appropriate administration just restores normal functioning. It isn’t an addiction if appropriate use normalizes an abnormal system.

    There are many complicating factors. It isn’t rare for patients to rely on opioids for reasons other than pain, so there is a real risk of these drugs being used inappropriately, but that isn’t a good reason to withhold them for people who have a very legitimate need and could have cancer-related pain relieved with opioids. Too many patients suffer because they or their family are misguidedly cautious — it’s really quite unlikely that a patient using opioids appropriately when really needed will become truly addicted if they improve and no longer need the pain medication. And sadly, it’s all too common for me to see primary care doctors, ER physicians, and other health care practitioners give woefully inadequate pain medication, such as a dozen Percocet tablets for someone riddled with painful bone metastases, out of a caution that is really just a reflection of their own ignorance of how to properly manage cancer pain.

    Finally, as a semantic point, the term narcotic implies that this is an illicit street drug, but opioid pain medications should not have a stigma associated with them when used properly.

    Of course, this isn’t to say that we should be too generous with opioids in people who don’t need them, because there is a real risk of abuse and addiction, but that is not a reason to withhold opioids at sufficient doses to the people suffering from cancer-related pain that can be relieved if these drugs are given and used appropriately.

  10. What are the most promising emerging treatments for lung cancer for the next few years?

    April 13th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/04 ... few-years/

    Here are a series of videos of different experts all answering the question, “What do you consider to be the most promising new agents and pathways that may emerge as actual treatments for lung cancer patients over the next few years?”. I think it’s very interesting to see how many of the same agents and approaches are mentioned by so many different people. It’s an exciting time in the field!

    (Click the link above to view the videos listed below)

    Dr. Lecia Sequist, Massachusetts General Hospital, Boston, MA

    Dr. Greg Riely, Memorial Sloan-Kettering Cancer Center, New York, NY

    Dr. Heather Wakelee, Stanford University, Palo Alto, CA

    Dr. Rosalyn Juergens, McMaster University, Hamilton, ON, Canada

    Dr. David Spigel, Sarah Cannon Cancer Center, Nashville, TN

    Dr. Phil Bonomi, Rush University, Chicago, IL

    Drs. Ross Camidge, Univ. of Colorado, Denver, CO, and Corey Langer, Univ. of Pennsylvania, Philadelphia, PA

    I hope these leave you engaged and hopeful about future developments in lung cancer!

  11. Further 2012 Lung Cancer Highlights from Dr. Leighl: MEK, KRAS Mutations, and Immunotherapy

    April 10th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/04 ... notherapy/

    Click the link above to view the podcast links.

    Here are the next couple of podcasts from Dr. Leighl’s “Highlights of Lung Cancer from 2012″ webinar. Part 3 focused on exciting research presented at ASCO 2012 and recently published on the promising evidence of efficacy of selumetinib, one of a new class of targeted agents called MEK inhibitors, for the 20-25% of patients who have a KRAS mutation. Despite the fact that we’ve known about KRAS mutations for over 20 years and it’s the most common mutation seen in lung cancer (and across different histologies), we haven’t found an effective treatment specifically for KRAS mutation-positive patients. Though this work is only a randomized phase II trial and not the definitive answer, it’s quite promising and is leading to enthusiasm about the larger studies with MEK inhibitors that are now getting off the ground. Here are the video and audio versions of the podcast, along with the figures as a pdf file.

    Leighl HL in LC 2012 Pt 3 MEK for KRAS Mutn Video Podcast

    Leighl HL in LC 2012 Pt 3 MEK for KRAS Mutn Audio Podcast

    Leighl HL in LC 2012 Pt 3 MEK for KRAS Mutn Figures

    Dr. Leighl continued with a discussion of the challenges that many patients with squamous NSCLC face, typically not having a cancer with a “driver mutation” like an EGFR mutation or an ALK rearrangement. She notes, however, that several new targets that may be especially relevant for patients with squamous NSCLC are becoming the subject of growing clinical research. In addition, one exciting development from 2012 that appears perhaps particularly beneficial for patients with squamous NSCLC is anti-PD1 antibody immunotherapy, an agent now known as nivolumab.

    Here are the video and audio versions of the podcast for this portion of the webinar, along with the associated figures:

    Leighl HL in LC 2012 Pt 4 Squam and Anti-PD1 Immunotherapy Video Podcast

    Leighl HL in LC 2012 Pt 4 Squam and Anti-PD1 Immunotherapy Audio Podcast

    Leighl HL in LC 2012 Pt 4 Squam and Anti-PD1 Immunotherapy Figures

    The last portion of her presentation, covering developments in maintenance therapy for advanced NSCLC, will be posted shortly.

    I hope you find this information helpful and encouraging!

  12. They see a lung nodule and suspect cancer. Why is a biopsy needed? The Tissue is the Issue

    April 5th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/04 ... the-issue/

    It’s pretty common for people to learn that they have a “nodule”, “mass”, or just “lesion” or “abnormality” on their chest x-ray or CT scan and presume that this means they have lung cancer. Often, the report from the imaging study will mention that the finding is suspicious for lung cancer or, in medical terminology often used on these reports, “bronchogenic carcinoma”. However, it’s important for physicians, patients, and their caregivers to all remember that the diagnosis of a lung cancer or any other cancer is really not made until a biopsy shows cancer under the microscope. People may be wary about undergoing a biopsy, whether because they fear the risk of complications or just the delay before moving on to the important step of developing a plan for what to do, but the biopsy is a critical step. Why?

    The key reason is that it’s very possible for something to look like cancer but be something else, whether a different cancer, or infection, inflammation, etc., even if a PET scan is done and there’s evidence of increased metabolic activity in a pattern that suggests cancer. Even in very current studies of patients who undergo surgery for a small and resectable presumed lung cancer, about 18% of patients are found after surgery to not have cancer after all, and these were patients who had a lobe of their lung removed on the presumption they had cancer. Many and probably even most oncologists have been part of or at least are aware of cases in which a patient was treated with chemo and/or other anti-cancer therapies, only to learn later that the abnormal areas were actually infection or sarcoidosis or some other finding that can look for all the world like cancer.

    Even if it is cancer, it’s not uncommon at all to be unsure based on the appearance on films whether it’s actually a small cell lung cancer, non-small cell lung cancer, lymphoma, or metastatic lung lesions from a cancer that started in another part of the body. Yet all of these answers lead to a different set of recommendations for how the cancer should be managed, which chemo agents to pursue, etc.

    Finally, cancer care has recently shifted to a new world of molecular oncology where many of our treatments are becoming guided by specific molecular markers that are detected by looking at the tumor tissue itself. There is an ever-growing interest in the potential value of re-biopsying patients as they demonstrate progression on a prior treatment. More and more clinical trials with exciting targeted therapies are requiring biopsy material to look for molecular features that may identify a subgroup of patients more or less likely to benefit from the novel treatment in question. The direction of cancer management is only moving more into the direction of being guided by molecular marker results, for many different cancers, and that will require plenty of biopsy material, ideally from recent sampling.

    This isn’t to say that a biopsy is completely risk-free. Any time you stick a needle into something, there’s some risk for bleeding, infection, pain, and for lung lesions, a risk for collapse of the lung. There is also a very tiny risk of track seeding (somewhere in the range of 1 in 1000) – having tumor cells track along where the needle is withdrawn after a biopsy for a lung cancer. Unfortunately, no intervention is completely risk-free, and we are left needing to make judgments about whether what we are considering has more benefits than anticipated risks. In nearly all cases of a suspected cancer, though, the anticipated benefits of knowing what you’re actually dealing with far outweigh the very small risks of the biopsy procedure.

  13. Dr. Natasha Leighl’s Highlights in Lung Cancer, 2012, Parts 1 and 2: New Options for Patients with EGFR Mutations, ALK and ROS1 Rearrangements

    March 30th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/03 ... t-1-and-2/

    Click the link above to view the podcast links.

    Here are the first two podcasts from Dr. Natasha Leighl’s webinar on “Highlights in Lung Cancer from 2012″. Dr. Leighl is a longtime friend who is a lung cancer expert at Princess Margaret Hospital in Toronto, Ontario, Canada. Earlier this year, she reviewed a wide range of topics that represented promising developments in lung cancer from 2012, some of which likely to lead to new treatment options for patients in the clinic over the next few years.

    Her presentation opened with new information on potential treatment options for patients with advanced NSCLC that has an EGFR mutation. Here are the video and audio versions of the podcast, along with the figures for it.

    Leighl HL in LC 2012 Pt 1 EGFR Mutn Pos Video Podcast

    Leighl HL in LC 2012 Pt 1 EGFR Mutn Pos Audio Podcast

    Leighl HL in LC 2012 Pt 1 EGFR Mutn Pos Figures

    She continued her tour of lung cancer highlights with a discussion on XALKORI (crizotinib) for patients with either an ALK rearrangement or the newly identified ROS-1 rearrangement.

    Here are the video and audio podcasts of the program, along with the figures for the program.

    Leighl HL in LC 2012 Pt 2 ALK ROS Rearr NSCLC Video Podcast

    Leighl HL in LC 2012 Pt 2 ALK ROS Rearr NSCLC Audio Podcast

    Leighl HL in LC 2012 Pt 2 ALK ROS Rearr NSCLC Figs

    We’ll have more of her presentation up here shortly, so please check back soon!

  14. North Shore Mayors Unite in Fight Against Lung Cancer; Deerfield Issues Proclamation and Honors High School Students

    FOR IMMEDIATE RELEASE

    Media Contact:

    Victoria Shapiro

    vshapiro@susandavis.com

    (202) 414-0774

    http://events.lungevity.org/site/PageNa ... 41013.html

    Community touched by lung cancer joins with LUNGevity Foundation,

    nation’s largest lung cancer-focused nonprofit

    Chicago, IL (April 10, 2013) –Deerfield, Ill. Mayor Harriet Rosenthal and mayors and representatives from numerous Chicago northern suburbs are showcasing their communities’ support in the fight against lung cancer at a Joint Proclamation Ceremony, proclaiming April 28 Breathe Deep North Shore Day, Monday, April 15 at 6:30 pm at Deerfield Village Hall. LUNGevity Foundation representatives President Andrea Stern Ferris, Board Member Susan Bersh, lung cancer patient and advocate Jill Feldman and local LUNGevity volunteers will attend. During the village meeting that follows, Mayor Rosenthal will issue Deerfield’s proclamation. Deerfield High School students Samantha Gottstein and Graham Ambrose will also be honored for their leadership in raising over $136,000 for LUNGevity Foundation, the nation’s largest lung cancer-focused nonprofit. These events reflect the North Shore community’s ongoing efforts to raise awareness and research funds for the fight against lung cancer.

    “One in 14 people will be diagnosed with lung cancer in their lifetime, and I’m one of them,” said Deerfield resident Jill Feldman, mom of four with two teenagers at Deerfield High School. “No one deserves lung cancer, and anyone can get it. Research funds are desperately needed to find more effective early detection methods and treatments for this disease. It is inspiring to see our community taking on a cause that has devastated so many here and across the nation.”

    Deerfield High School students took on the cause of funding lung cancer research for their 2012 annual School Chest fundraising effort in support of many classmates and teachers who have loved ones impacted by the disease. The students raised the funds through three weeks of multiple daily student-led fundraisers. The Deerfield High School Student Council, including School Chest Co-Chairs Samantha Gottstein and Graham Ambrose, will be honored again for their role spearheading the efforts at a special student council meeting and plaque presentation Tuesday, April 16 at 7:30 am at Deerfield High School. Dr. Christopher Maher of Washington University in St. Louis, whose lung cancer research receives funding from the students’ donation, will attend with LUNGevity representatives.

    “Deerfield and the North Shore communities are role models in the fight against lung cancer,” said LUNGevity Foundation President Andrea Stern Ferris. “If more communities embraced the fight against lung cancer with the passion, commitment and caring of the North Shore, we as a nation could change the face of lung cancer survivorship.”

    In the past year alone, North Shore area grassroots events, combined with Deerfield High School’s School Chest project, have raised over $280,000 for LUNGevity’s lung cancer research funding.The next event, Breathe Deep North Shore, a 5k fun run and one-mile walk in Deerfield, is April 28 and expected to host approximately 1,500 supporters and raise well over $100,000.

    “The heart of LUNGevity beats strong in Deerfield and the rest of North Shore,” said LUNGevity Board Member Susan Bersh, who is organizing Breathe Deep North Shore with Volunteer Event Co-Coordinator Cindy Schwartz. “I, like so many in our community, have lost people I love to this terrible disease. It’s wonderful to see our mayors coming together and showing their commitment to making lung cancer a priority and our community uniting to support so many of LUNGevity’s efforts. Our community’s unwavering support and the dedicated students at Deerfield High School give us all hope for the future in the fight against lung cancer.”

    What:

    North Shore Mayor’s Joint Proclamation Ceremony, Deerfield Village Proclamation & Deerfield High School Student Plaque Presentation

    When:

    April 15, 2013

    6:30 pm – Joint Proclamation Ceremony

    7:30 pm – Deerfield proclamation and Deerfield High School Student Plaque presentation

    Spokespeople:

    LUNGevity Foundation President Andrea Stern Ferris; Board Member Susan Bersh; lung cancer survivor Jill Feldman; and Deerfield Mayor Harriet Rosenthal

    Where:

    Deerfield Village Hall, 860 Waukegan Rd., Deerfield, Ill. 60015

    Media Notes:

    The Deerfield High School Student Council will be presented with a plaque of gratitude on April 16, 2013 at 7:30 am at Deerfield High School. Media are invited to attend both the April 15 and April 16 events, as well as Breathe Deep North Shore on April 28 at 9:30 am at Deerfield High School. Advanced notice of attendance of the April 16 event at Deerfield High School is recommended. Please notify Susan Bersh, 847-338-5635 or email, northshore@lungevity.org by 4/15.

    View Deerfield students’ lung cancer School Chest video here

    More information on Breathe Deep North Shore is available at http://www.lungevity.org/northshore.

    On-site media contact for all events is Susan Bersh, 847-338-5635

    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.

  15. Finding the Silver Linings

    April 10th, 2013 - by Jill Feldman

    http://blog.lungevity.org/2013/04/10/fi ... r-linings/

    I have always wondered why people refer to their cancer diagnosis as a gift. Gifts are supposed to be exciting, fun and come from love. If being diagnosed with lung cancer was a gift, I would have returned it a long time ago!

    But, I am a believer in silver linings; finding the positive in a situation no matter how unpleasant, difficult or even painful it may be. I know it’s easier said than done, but after losing my parents and other loved ones to lung cancer at a young age, I learned that it was my choice about how I respond to and handle the inevitable adversity we face in life.

    I have chosen to find the silver linings. Finding the silver lining (which isn’t always easy!) provides balance and perspective during tough times. The ability to find something positive among the negative is empowering, and to find meaning in tragedy helps give both physical and emotional suffering a purpose. That purpose, and meaning, gives me a reason to keep going, to believe, to have hope.

    Over the years I’ve learned that silver linings can be as small as your first walk to the corner after surgery or as big as being told you’re cancer-free. I’ve learned that silver linings don’t take away pain, sadness or isolation, but they do help lessen the blow at times. Most importantly, I have learned that finding the silver lining is a choice ~ sometimes it’s hard to find, but it’s there if you look hard enough.

    In the very large dark cloud of lung cancer that has tormented me for 30 years I have found several silver linings. Below are just a few:

    Inexplicable tragedy can create an opportunity to take anger and sadness and turn it into positive change. For the past 11 years LUNGevity has been a vehicle to redirect my negative feelings into action, which has helped me reconcile with losing so many people I loved to lung cancer. It also helped me because my involvement with LUNGevity armed me with the weapons (knowledge, friendships and relationships with doctors and nurses) I needed to face my own lung cancer diagnosis with courage and not fear.

    Ten years ago lung cancer was the invisible disease. That is no longer the case, and I am honored that I have had the opportunity to play a critical role in the growth of LUNGevity and the fight against lung cancer. There have been more advancements in lung cancer research in the past 7 years than the 25 years prior. I have options that mom, dad and so many others didn’t like targeted therapy and focused radiation; these are major silver linings in a disease previously associated with very little hope.

    I have developed lifelong friendships and relationships with people I would have never met if it weren’t for lung cancer. Friends who understand a part of me that no one else does. Friends that I can’t imagine not being in my life.

    I have a story that matters. A story of purpose that involves all the people who have touched my life and whose lives I have touched. There is both good and bad woven into my story and sometimes it feels like the bad plays a major role, but this quote says it all, “Life is like photography, we use the negative to develop.” I do not know how my story will continue to develop, but it’s a story I am proud to tell.

    It takes a village The far-reaching unconditional support my family has received from our small community has been touching and humbling; from the sheer number of people who want to help to the unbelievable measures many have gone to support us.

    The silver lining in my community reaches far beyond me personally. I am still in awe of the teenagers at Deerfield High School. The awareness and funds for research that they raised in just three weeks is mind blowing. I’m not sure they really understand that their efforts will have an impact on those affected by lung cancer for years to come. And last year our small community of 18,000 people attracted over 1,300 people and raised more than $140,000 for Breathe Deep Deerfield (a fun-run & walk) ~ something cities with millions of people have never done. The overwhelming community support gives me strength and hope.

    I am excited that we have expanded the reach of our event across the northern suburbs of Chicago to create Breathe Deep North Shore. I can only imagine the impact we can have if the surrounding communities join in the fight against lung cancer. Margaret Mead once said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”

    We are that small group of thoughtful, committed citizens and we can change the world of lung cancer. Please join me at Breathe Deep North Shore on April 28th at Deerfield High School. To register or donate visit www.lungevity.org/northshore.

    Of course not everyone believes there is a silver lining in their cancer experience and that’s ok. No matter where I am in my cancer journey, I will continue to find the silver lining. Why? Because it’s beautiful and it gives me hope ~ no cancer, pain or suffering can take that away!

  16. Communicating About Your Cancer

    April 4th, 2013 - by admin

    by Anne Gallagher

    http://blog.lungevity.org/2013/04/04/co ... ur-cancer/

    Do you share everything about your cancer diagnosis with your family and friends? And if you do, do you do it right away?

    I have been accused of withholding information in the past from my loved ones about my lung cancer. When it comes to communicating with family and friends about my cancer diagnosis, I feel strongly that it’s up to me how and when the information is disseminated.

    Some people need time to process. I am the type of person who needs to mull over information and digest it before I can reasonably talk about it with another person. For years I did keep information somewhat hidden and only gave out small amounts of information because I thought I was protecting them. What I have come to realize is that I was protecting myself.

    It was very difficult for me to watch my family and friends experience the information that I was giving to them so instead I limited that information. The more emotional I knew the person would be, the harder it was for me to share openly with them.

    Communicating with family members and friends can be a tricky situation. Not only is the patient dealing with the information about themselves, but they are dealing with the emotions of their support system.

    As a Patient Navigator I will frequently see patients choose wisely who they bring with them to a consultation. They may not bring the child who is the most emotionally fragile, or the person who may be a distraction rather than a support. While it is important to have that second set of ears in the room, make sure that it is someone who can write down good information without being too distracted by the news.

    I encourage patients to have at least one person in their life that they can be really honest with. I don’t care if it is a spouse, long-time friend, or even a therapist; patients need one person that they can say how much this really stinks to. I know that family members and friends just want to be helpful but letting the patient guide the communication is an important piece to being helpful.

    Patients also need a gatekeeper for information and the information that is being shared. It might be a person designated this responsibility or one of many websites that are designed to communicate information for patients. I especially like Caringbridge.org or Mylifeline.org. Both of these websites allow you to journal what is going on and then your family and friends sign up to receive a notification when something new is written. This allows a great number of people to get information without the patient getting many phone calls and stops patients from having to tell the same story over and over. Not only is this a private way of communicating but friends and family can leave messages to the patient and those little notes can be very uplifting during difficult times. Many patients use Facebook to communicate and creating a closed group is another option.

    Most patients receive offers of help, especially early on in a diagnosis. As a new patient it is hard to know what to ask for and it is also hard to swallow that little bit of pride and independence and ask for help. I find that people really do want to help but they need very specific requests. It is our responsibility as patients to say exactly what we need. Sometimes that means a specific task like a meal for a night, childcare, or a ride to treatment. Sometimes it means saying that I just need someone to listen to me or even give me some space. There are great sites like lotsahelpinghands.com or mealtrain.com in which patients can list specific needs and friends and family can sign up for duties or to bring meals. These duties can even be coordinated by another person so the patient can focus on their treatment.

    Communicating throughout a cancer experience can be difficult but there are tools that can help. Always keep in mind that all parties involved are hearing the information with their own set of circumstances and with their own emotional abilities. Sometimes family or friends do not behave or communicate how we expect them to in this situation. Honesty and forgiveness go a long way in this area.

    Communication is the key to getting through this process. So keep those lines of communication open as much as possible.

    If you need help communicating with your caregivers and family members, visit LUNGevity’s Caregiver Resource Center for resources and suggestions. Post your ideas, tips and suggestions below.

    **You can see Anne at the 2013 LUNGevity HOPE Summit in Washington DC where she will be speaking on a panel about Surviving with Cancer.

  17. LUNGevity Foundation Announces Additions to Board of Directors

    FOR IMMEDIATE RELEASE

    Media Contact:

    Victoria Shapiro

    vshapiro@susandavis.com

    (202) 414-0774

    http://events.lungevity.org/site/PageNa ... 40213.html

    Contributing Valuable Experience to Support LUNGevity’s Strategic Growth

    WASHINGTON (April 2, 2013) – LUNGevity Foundation, the nation’s largest lung cancer-focused organization, is pleased to announce additions to its Board of Directors to guide and assist its continued growth and expansion.

    Peter Babej is Global Co-Head of the Financial Institutions Group at Citi. Previously, Peter served as Co-Head of Financial Institutions – Americas at Deutsche Bank and as a Managing Director at Lazard. Over the course of his career, Peter has advised many leading companies across the financial and public sectors worldwide with respect to both mergers and acquisitions and financing.

    Grace Bender comes to LUNGevity with extensive experience in public relations, government relations, management, and community volunteer work. She has been active in many non-profit organizations, both as a board and committee member, contributing to program development, fundraising, financial management, and special events. Her company infinisity, inc. produces healthcare aids such as mymedmanager™, a personal healthcare and medication organizer.

    Dr. Pierre Massion is Chairman of LUNGevity Foundation’s Scientific Advisory Board and Director of the Thoracic Program at Vanderbilt-Ingram Cancer Center in Nashville, Tennessee. Dr. Massion is pursuing innovative methods to deepen the knowledge of tumorigenesis as well as developing molecular strategies for the early detection of lung cancer.

    Chris Olivier is an entrepreneur with extensive consumer marketing and general management experience, working in operating roles in both private equity and non-profit arenas. Currently, Chris is a principal in Craft Catalyst, a beverage brand accelerator helping emerging brands manage their growth. Chris served as an active board member of Take Aim At Cancer, a non-profit focused on raising funds and awareness for targeted cancer therapy. LUNGevity is delighted that Take Aim at Cancer has joined with LUNGevity to help accelerate the funding of as much impactful research as possible.

    “I am honored and thrilled that Grace, Chris, Peter, and Pierre have agreed to serve on our board," said Andrea Stern Ferris, President and Chairman of the Board of LUNGevity. "Each contributes valuable experience and the type of vision we rely upon as we continue to grow LUNGevity’s impact on behalf of our lung cancer community.”

    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 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.

  18. My Team

    March 26th, 2013 - by Kenneth Lourie

    http://blog.lungevity.org/2013/03/26/my-team/

    Not literally, of course. Nor am I the coach or the general manager. But I do feel like an owner, in that there are people that I invest in – again not literally, but definitely emotionally.

    The people who express the kind of positivity and confidence and encouragement – and empathy and understanding quite honestly, of the demands and rigors physically, emotionally and spiritually of being a terminal cancer patient. Aside from my immediate family and inner circle of friends, co-workers, and fellow cancer patients with whom I’ve connected, I refer to all the people who have sent cards, letters, e-mails and general well-wishes offering their hope, prayers and confidence in yours truly surviving this ordeal.

    Moreover, there are people I’ve met along the way: health care providers, therapists, newly diagnosed cancer patients, previously diagnosed cancer patients, individuals who don’t know me/don’t know my story; whose personality, perspective, enthusiasm and sincerity have empowered me, and who have exuded the kind of positive and uplifting spirit that fuels the passion that a stage IV lung cancer patient tends to lose as the fight for one’s own survival continues. To invoke a sports cliché: these are people who are good in the locker room/clubhouse.

    These individuals are selfless, dedicated, motivated, caring, concerned, successful, can-do-type positive influences who optimize their optimism and bury their pessimism, especially around a terminal cancer patient. The last thing, the absolute last vibe that a terminal patient needs is negativity, depression, anxiety, worry and stress; internally and equally importantly: externally. I don’t need to feel or be influenced by or be in the presence of anybody – or anything, that intentionally or unintentionally (by their nature) brings me down or opens me up to self doubt, or doubt of any kind for that matter. I need to believe. And most importantly, I/we need to be infused with positivity. And I don’t mean Stepford Wives-type behavior (robotic, following a script, lacking in substance) either. I mean, the human touch, emotionally certainly and occasionally even physically. In summary, we need a connection, a feeling of togetherness and mutual awareness of the patient’s plight and a willingness to face it and dare I say, discuss it together in an intelligent, thoughtful and exuberant-type manner where the highs – in life and in any treatment protocol, are maximized and where the lows are minimized.

    The up-and-down-and-all-around existence of a cancer patient who’s terminal is already as much negativity (which becomes almost endemic) as one can endure. Therefore, any more negativity from any source in any way/context might just push that patient over his or her emotional edge. An edge which might involve a metaphorical set of finger nails.

    Who knows really, what the patient’s limitations are? We only know who, what, where and when circumstances exacerbate an already precarious position, a position certainly worth avoiding.

    My team consists of individuals with attitudes that reflect this reality. It may not be for everybody. But it better be for the cancer patient. “I don’t know much, but I know that.” (Ben Affleck – out of context, from the movie “Good Will Hunting.”)

    Who’s on your team in this fight against lung cancer?

    _______________________________________________

    “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)

  19. I Want to Fight My Lung Cancer: What Should My Diet Be, and What About Supplements?

    March 24th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/03 ... pplements/

    The question of what and how to eat is one of the most common ones patients and caregivers have about how to manage cancer, and that’s understandable: we want to exert control in an all-too-uncontrollable situation. There’s also a lot of conflicting information out there, including some pretty grand claims of what dietary modification will do to help people, including some even suggesting that cancer can be reversed or even cured with certain diets. So what should a patient do, how should they eat, if they want to help themselves? And what about all of the supplements I read or hear about that are immune-boosters and claim to fight cancer?

    I’ll qualify my comments by saying that it’s important to know the source and their motivations: everyone (myself included) has their biases, and allopathic (conventional Western medicine) doctors are trained to generally follow evidence from clinical trials. Most Western docs are paid to give chemotherapy or do interventions like surgery or radiation, and there’s far more research about these kinds of interventions for fighting cancer than there is evidence from clinical trials to speak to the potential value of a diet or supplement. These days, the vast majority of cancer research is sponsored by big pharma companies or the manufacturers of radiation equipment, with some general support for big questions from the government. Without a financial incentive for any backer of quinoa or kale, there isn’t an engine for studying whether certain foods fight cancer. Perhaps some marketers of various purported anti-cancer supplements could run clinical trials, but such trials really don’t exist, whether it’s because they would be very costly to do properly or there’s really a suspicion by those who market these supplements that exposing them to a higher level of examination would lead to a good reason for the skepticism that most conventional physicians view them with.

    Moreover, conventional/allopathic medicine providers are trained with a core tenet primum non nocere — “above all, do no harm” — a concept that stems from the concept that the body is largely self-healing and that we may or may not be able to intervene effectively, so we should be cautious about recommending things that could potentially be harmful. The extension of this is that most doctors don’t recommend things for which there isn’t enough evidence to say that it’s significantly beneficial — it might be helpful or harmful, but if we don’t know, doctors shouldn’t take the chance of giving a treatment that could be more harmful than not doing it. It’s fair to say that Western medicine doctors tend to become trained to be conservative in their thinking and their treatment (and even lifestyle) recommendations.

    Obviously, this mindset isn’t for everyone, and I think that a big part of the appeal of conventional and alternative medicine approaches is that many people are looking more for hope and the promise of something potentially better than hard evidence to support it. ”Twas ever thus”: there has always been a yin/yang relationship between conservative medicine practices and alternative medicine strategies, always a need to fulfill based on the gulfs in conventional medical care.

    So my comments will come from the perspective of a well trained allopathic medical oncologist, not the word from on high, but I’ll be circumspect and try to be fair.

    The short answer is that there is no good evidence that focusing on a specific diet will lead to a better outcome in lung cancer than just eating what you want. A “Western diet” heavy in meats and animal fat and calories is clearly a major culprit in the higher rates of many cancers that we’ve seen in the US over time and compared with other cultures, and I’ll say that I’ve shifted my own diet to a vegetarian one for health reasons (and there’s some evidence that a vegan one may be even more healthful, though much harder to pursue longitudinally). A diet with far less animal fat is likely to be beneficial for cancer prevention over the long term, but there’s only the occasional study, such as one called the Women’s Intervention Nutrition Study (WINS) that looked at breast cancer patients, that supports the idea that a low-fat diet is associated with a better outcome for people with a diagnosis of cancer already. In general, there is extremely little evidence that changing your diet leads to a better outcome if you have cancer.

    That doesn’t mean that we recommend people max out on Pop Tarts, Twinkies, and Velveeta. Whether fighting cancer, heart disease, or otherwise for general health, a diet lower in animal fats, processed foods, and refined sugars makes sense, but there isn’t a clear value to approaching diet in a militantly rigid way. A balanced, varied diet is great, and nearly all cancer experts I know recommend this and prefer to just see patients maintain their weight. In many, many studies, the people who lose a lot of weight over time are those with the worst prognosis.

    If people want to follow a diet to feel that they’re playing an active role in fighting their cancer, that’s perfectly great, as long as it isn’t so restrictive that they’re becoming malnourished. But I think it’s important for people to understand that there is not a meaningful amount of high quality evidence to support that dietary changes fight active cancer in a significant way. The zealous advocates of various diets can point to evidence of anecdotal cases of people here and there who are doing very well on whatever diet they’re promoting, but there’s a good reason that medically knowledgeable people dismiss anecdotes. Remember that “even a broken clock is right twice a day”: there will always be a few people who defy expectations no matter what happens, but that doesn’t mean that these results are broadly applicable. There are also various pre-clinical studies (test tube or animal models, not in humans) that can support the principles of one diet or another, but these results are notoriously poorly correlated with actual results in studies with real human patients. It’s helpful for people to be very skeptical about the claims made about what various diets will do, especially if the recommendations come with lofty promises and costs.

    Then there are a nearly endless number of vitamins and supplements. Some are studied in some limited fashion, but many/most are not. They often come with anything from a vague innuendo claiming that the pill is an immune booster (a claim that can be made about any item at the local farmer’s marker) to a huge vertical marketing platform pushing it. Again, I can’t say that these treatments aren’t or couldn’t be effective, but they require a level of faith that something will be beneficial in the absence of high quality evidence. Essentially, it boils down to the concept that most naturopathic or complementary and alternative medicine (CAM) practitioners tend to have a different threshold of evidence than most conventional physicians. CAM practitioners typically extoll an approach that if there’s a potential value and a reasonable premise, it’s fine and potentially advisable to pursue an intervention, while allopathic practitioners are typically far more conservative and gun-shy about recommending something that doesn’t already have evidence to demonstrate its efficacy.

    In the end, an informed patient is certainly within their rights to do whatever they want to pursue. As I said in the beginning of this post, it’s understandable to want to exert some control in a humbling, uncontrollable situation like cancer, but I think the key is the INFORMED part. The evidence really supports that there’s no clearly beneficial diet or supplement, but on the other hand, “absence of proof isn’t proof of absence”. It’s worth being aware of the limitations of the realistic evidence to support the claims being made, and otherwise just remembering the motivations and knowledge base of the person making recommendations to you.

    Good luck!

  20. Maintenance Therapy: Many Interpretations of the Leading Options

    March 22nd, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/03 ... g-options/

    As explained by several leading experts around the US, here are the leading options for patients who have completed first line doublet chemotherapy without demonstrating progression. Briefly, the concept is that after a lung cancer has been treated aggressively with a combination chemo approach as first line treatment, we have three leading options to consider:

    1) Continue one or more of the agents from first line as maintenance therapy (continuation maintenance therapy)

    2) Stop all first line agents and switch to one or more new agents (switch maintenance therapy)

    3) Take a break from treatment and re-start it after a fixed break (“take a month off”) or until scans show progressing disease

    Here are a range of perspectives from several thoughtful experts who are trying to balance the desire to control the cancer with a hope for patients to enjoy the best quality of life as possible as well:

    Click link above to view the following videos.

    Dr. Ravi Salgia on “My Approach to Maintenance Therapy for Advanced NSCLC”

    Dr. Sandler on Options for Maintenance Therapy: Switch, Continuation, or a Treatment Break?

    Dr. Sarah Goldberg: The Potential Value of a Treatment Break as an Alternative to Maintenance Therapy in Advanced NSCLC

    Dr. Phil Bonomi: Is Maintenance Therapy after First Line Chemotherapy a Mandate, An Option, or Neither?

  21. What Are the Most Promising Novel Agents Coming on the Lung Cancer Scene? Several Experts Weigh In

    March 12th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/03 ... lc-agents/

    Here’s a collection of video responses from a group of experts at the “Targeted Therapies in Lung Cancer” conference a few weeks ago to the question, “What are the new treatment approaches and agents you’re most optimistic about for potentially becoming clinical tools in the next few years?”.

    Click the link above to view the following videos.

    Drs. Ross Camidge (University of Colorado) and Corey Langer (University of Pennsylvania)

    Dr. David Spigel (Sarah Cannon Cancer Center)

    Dr. Rosalyn Juergens (McMaster University)

    We’ll be adding more, so look out for them. I hope these are interesting and helpful for you!

  22. LUNGevity Foundation Hosts Second Annual "Take A Lap With LUNGevity" Walk At NBC 4 Health & Fitness Expo, March 16-17

    http://events.lungevity.org/site/PageNa ... 31113.html

    FOR IMMEDIATE RELEASE

    Media Contact:

    Victoria Shapiro

    vshapiro@susandavis.com

    (202) 414-0774

    Storm Team 4 Chief Meteorologist Doug Kammerer joins LUNGevity

    to spread awareness and information about lung cancer

    WASHINGTON (March 13, 2013) – For the second year, LUNGevity Foundation, the nation’s largest lung cancer-focused nonprofit, will participate in the NBC 4 Health and Fitness Expo March 16 – 17, 2013 from 9 am to 5 pm at the Walter E. Washington Convention Center in Washington, D.C. LUNGevity Foundation will host the “Take a Lap with LUNGevity” walk at the Get Healthy 4 Life Walking Track, Saturday, March 16 from 11 am – 12 pm. For the second year, Storm Team 4 Chief Meteorologist Doug Kammerer, recipient of LUNGevity’s “Raising Hope” award, will lead the walk. Throughout the weekend, the Foundation will welcome Expo visitors and provide information about LUNGevity Foundation and lung cancer resources at booth #1507.

    To join Storm Team 4 Chief Meteorologist Doug Kammerer, for “Take a Lap with LUNGevity,” participants should meet at the LUNGevity table in the center of the Get Healthy 4 Life Walking Track at 11 am. The first 50 expo walkers will receive LUNGevity t-shirts.

    WHAT: LUNGevity Foundation’s “Take a Lap with LUNGevity” walk with Storm Team 4

    Chief Meteorologist Doug Kammerer

    WHEN: Saturday, March 16, 2013: 11 am - 12 pm EST

    WHERE: The Get Healthy 4 Life Walking Track at the Walter E. Washington Convention

    Center in Washington, D.C.

    *Participants should meet at 11 am at the LUNGevity table in the center of the track for a send off from Storm Team 4 Chief Meteorologist Doug Kammerer

    LUNGevity 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. To help support its mission and raise awareness of the disease, the organization hosts over 75 community-building and fundraising events across the country each year.

    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 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.

  23. Instincts

    March 8th, 2013 - by Kenneth Lourie

    http://blog.lungevity.org/2013/03/08/instincts/

    …related to having been diagnosed with stage IV, non-small cell lung cancer, the terminal/“incurable, but treatable” kind, according to my oncologist. The kind whose median life expectancy at diagnosis is eight months. The kind that John Rhys Davis as Sallah from the 1981 movie “Raiders of the Lost Ark” might have described as “very bad,” just as he had described the asps slithering below on the floor of the tomb he and “Indy” had just unearthed. So the news I received in late February, 2009 – such as it was, was never very good. In fact, for an asymptomatic, non-smoking, 54-and-half-year-old male with an immediate-family history of NO cancer, it was, well, “shocking” barely scratches the emotional surface of what I was feeling.

    Forty-five months later, I am still dealing with feelings – as in still living, for which I am amazingly fortunate. However, those feelings seem to sometimes have a mind of their own, and accordingly tend to take over and rewire one’s brain (figuratively speaking). Moreover, thoughts, actions and behaviors change, and not always for the better, and rarely for the best; most likely a direct result of the cancer’s emotional wallop. Thoughts you don’t want/ never had seep in despite your best attempts at minding them. Behaviors previously uncharacteristic manage to exert more control than you ever imagined. Actions previously unfamiliar cause one to wonder if who you were – pre-cancer, you will ever be again. You don’t want to lose yourself inside the whole cancer culture, but being told you’re going to die prematurely: in “13 months to two years,” has a way of rewriting your record books, whether you intended to or not. Not giving in to this cancer consequence has been my greatest struggle.

    Early on, I remember asking my oncologist: “Is it OK to still buy in bulk?” For all you know, based on much of what your doctor is saying, and what you are sensing, your future is tenuous and extremely unpredictable (a version of the humorous advisory to “not buy green bananas”). I mean, the diagnosis is terminal cancer; “HELLO.” What are you supposed to think? This is how your mind takes over and you sort of lose it/lose control of it. As former Vice President “Dan” Quayle said in a speech to the United Negro College Fund (not about cancer), “What a terrible thing it is to lose one’s mind.” Still, it certainly applies.

    Another brain drain has to do with specific events scheduled in the future, a future whose guarantee – for me, has been invalidated. I’m watching television during the summer of 2012 and I see ads for Downton Abbey’s third season premiere in January, 2013, and instinctively I wonder, will I be alive to see it?

    Road projects are another example. At the beginning of the construction of the Intercounty Connector in Maryland (a cross-county highway being built near my house), regularly I would be stuck in the project’s related road closures/redesigns and bridge-type flyovers and I would always think to myself: “Am I going to be alive when this project is finished or am I just going to suffer its building pains?”

    Next May, the LUNGevity Foundation, the largest foundation in the country dedicated to lung cancer research (and on whose Web site my cancer columns are now being posted) will be hosting their annual “Hope Summit” in Washington, D.C. I have been invited to attend and/or speak. My first thought upon receiving the invite: “Am I going to still be alive in May?”

    I want to be positive. I am positive. But cancer is a huge negative. It’s a constant battle of good versus evil. Sort of like the Indiana Jones movies. But this isn’t the movies.

    This is real. This is cancer, the true definition of “very bad.”

    How do you stay/get positive while living with cancer? Comment below.

    ____________________________________________________________

    “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)

  24. Acquired Resistance to Targeted Therapies in Lung Cancer – How Do the Experts Approach It?

    March 8th, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/03 ... proach-it/

    Here are a couple of great videos from several experts in lung cancer that describe their approach to the setting of acquired resistance, when a patient with a specific “targetable” mutation who responds well to the relevant treatment in question then develops progression of disease. This is actually a pretty new challenge in lung cancer, and most experts feel that there’s reason to consider some newer approaches.

    Click on the link above to view the video links.

    Dr. Greg Riely (Memorial Sloan-Kettering): How Should We Approach Acquired Resistance to Targeted Therapies in Advanced NSCLC?

    Dr. Ravi Salgia (University of Chicago) on Management Strategies for Acquired Resistance to Targeted Therapies, Single Focus or More Diffuse

    Dr. Geoffrey Oxnard on Managing Acquired Resistance to EGFR Inhibitor Therapy (and Probably Crizotinib, Too)

    I’ll add a post in the next few days that includes the answers of several experts to the question of what they think are the most promising new targeted therapies for lung cancer that we might actually see integrated as treatment options for patients in the next few years.

  25. More Great Videos on Targeted Therapies for Lung Cancer

    March 1st, 2013 - by Dr. Jack West

    http://expertblog.lungevity.org/2013/03 ... -iaslc-sm/

    We’ve been producing video content from the IASLC Targeted Therapies in Lung Cancer conference as quickly as we can. Here are a bunch of additional videos from a range of great experts all around the US, covering many of the most timely topics in targeted therapies for lung cancer today.

    Click on the link above to view the video links.

    Dr. Heather Wakelee (Stanford) How Should We Use Molecular Marker Information in Earlier Stage NSCLC?

    Dr. Karen Kelly (Univ. of California, Davis): What Molecular Markers Do You Routinely Send for in Your Patients with Advanced Non-Small Cell Lung Cancer?

    Dr. Sarah Goldberg (Yale): How Do You Discuss the Pros and Cons of Molecular Testing, with Potential Delays and Need for Rebiopsy?

    Drs. Ross Camidge (Univ. of Colorado) and Corey Langer (Univ. of Pennsylvania): Who Do You Recommend Repeat Biopsy for if There Isn’t Enough Tissue for Molecular Testing?

    Dr. Bob Doebele (Univ. of Colorado): Will We Be Able to Use Molecular Markers and Apply Targeted Therapies to Broader Lung Cancer Subtypes in the Near Future?

    I’ll have more to share again very soon. I hope these are helpful. Interestingly, you’ll come to see the range of recommendations on the same question, even among experts. This should highlight that there really isn’t only one right answer to these questions right now.

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