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  1. LUNGevity Foundation has launched Patient FoRCe, the first-ever critical bridge to connect the voices of lung cancer patients — a significant population — with health care professionals, regulators, policymakers, and developers of drugs. “Lung cancer is the #1 cancer killer, taking the lives of 157,000 Americans every year. LUNGevity is leading the way in changing the paradigm of cancer treatment ─ from assuming patient wishes to evidence-based conclusions about what patients value,” said LUNGevity Chairman Andrea Stern Ferris. “Through Patient FoRCe, lung cancer patient voices will be heard and heeded as policy is developed, research is conducted, and treatment decisions are made.” Patient FoRCe, LUNGevity’s Patient-Focused Research Center, will undertake never-before studies of those living with lung cancer, collecting and sharing robust qualitative and quantitative data about lung cancer patients’ preferences and experiences to inform treatment, as well as relevant policy and research protocols. Patient FoRCe’s immediate focus will include continuing a study of patient preferences and experiences regarding access to care, treatment and diagnostic options, and the impact of symptoms on daily living, as well as conducting studies to facilitate patients’ access to biomarker testing, which is essential to implementing precision medicine. Patient FoRCe will also initiate a study into increasing adherence to lung cancer screening protocols for people at high risk for lung cancer. Additional projects will be based on stakeholder input and the guidance of an external advisory board of survivors, academic and community clinicians, industry partners, patient advocacy groups, and community partners. LUNGevity formally announced Patient FoRCe at the American Association for Cancer Research’s 2017 Annual Meeting in Washington, DC, on Sunday, April 2. Andrea Stern Ferris spoke to the urgency of the initiative, saying, “For too long, public policy, the practice of medicine, and drug development have not adequately integrated the viewpoint of patients. LUNGevity is determined to change that paradigm. By incorporating the patient’s voice into every step of the process – in policymaking, in trials, in treatments – we will improve outcomes for those diagnosed with lung cancer.” “Our goal is to uncover gaps in information, misperceptions about patient attitudes, and areas of unmet patient need,” explained Dr. Upal Basu Roy, Director of Patient FoRCe. “LUNGevity is the only organization driving this type of change for the lung cancer community, and we anticipate that our findings will shape the future of lung cancer care.” For more information about Patient FoRCe, visit www.LUNGevity.org/patientforce. Click here to read the full press release.
  2. Early on, we learn Algebraic equations with only one solution. Then we encounter equations with two solutions ⎯ Quadratic Equations. Consider: x2 + 3x – 4 = 0. This has two solutions: x = -4 or x = 1. Both are correct; one is negative and one is positive. Algebra students get very comfortable with solutions having a positive and negative outcome ⎯ lung cancer survivors are less comfortable! The positive outcome for lung cancer is extended life. But like quadratic equations, there can be negative outcomes that are less desirable. Mine is chronic pain. So to the question, how does one fit a negative outcome into the positive? No, Algebra does not help. But, for those in treatment or surviving after treatment, preparing for life with negative outcomes is helpful. My chronic pain has two primary and many secondary causes. I have peripheral neuropathy ⎯ numbness in fingers and toes including a burning sensation in toes and pain in the foot joints. It is a common Taxol side effect, and we informally call it “taxol toes.” Also, I have nerve damage caused by quite a few surgeries to my right chest that is chronically painful. How do I fit these negative outcomes into life? My strategy is to tolerate chronic pain until bedtime. Then something must be done or I won’t sleep. I’ve cycled through over-the-counter, then prescribed sleep medications. Both worked for a while. Doc found a study suggesting a therapeutic effect for Xanax on chronic pain. He prescribed a 0.5mg dose at bedtime, allowing an increase to a total of 1.5mg. This relaxes me and makes me drowsy. It works about 6-in-10 nights. A secondary cause sometimes drives pain above chronic levels. These are: chemotherapy induced joint pain; muscle cramps; stress, anger and excitement; sneezing and coughing; and flying on aircraft. The joint pain, an in-treatment side effect, required narcotic medication in every case to relieve. Reliance on narcotics has two downsides: an inability to think and function normally the next day and constipation. However, other secondary causes occasionally require narcotic medication to achieve relief. Because of the downside to narcotics, we’ve developed a couple of unique pain abatement procedures that may be of interest. Our first strategy is to apply prescribed lidocaine transdermal patches to incision scars and or feet in combination with Xanax. Since lidocaine dosage is limited to 2 patches, my wife cuts them into strips and fits them along my incision scars, and applies them to my feet. A pair of tight fitting socks are stretched over my feet to keep them in place. When the offending pain spike is either in my chest or feet, a full 2-patch application is used. The patches are applied in time to allow the Xanax to work and I sleep, hopefully. The next works only for feet and is a back-up strategy if lidocaine fails. My wife uses an ace bandage to wrap reusable frozen Blue Ice packs to the bottom of each foot. The cold is very uncomfortable for a couple of minutes, but in a short time my feet are numb and if I’m lucky, I sleep. Muscle cramping is a long term side effect from chemotherapy. It stems from low Magnesium blood levels. I take at least 500 mg of Magnesium supplement per day. My oncologist would rather I take 1000 mg, but I suffer digestive system revolt. I learned that almonds provide 75 mg of Magnesium per ounce so I snack in lieu of a second pill. Regardless, I still experience one to two cramping events per day. When they occur anywhere near my feet or chest, chronic pain soars. There is however, no remedy for cramps. The worst occur in the middle of the night and wake me up. Archimedes, the ancient Greek hydrologist, provided an explanation for why immersing up to my neck in a swimming pool eases incision pain. The upward buoyant force of the water offsets the gravitational pull on chest incisions thus minimizing pain. Almost every day our community pool is open, I spend hours in the water. This does not eliminate pain but reduces it noticeably. On leaving the pool, the normal level returns but it is very therapeutic. Lying in a bathroom tub, unfortunately, does not work because there is not enough water for complete submersion. A hot tub works fine, but there is no difference in pain relief from water temperature. Flying in a commercial airliner also spurs chronic incision pain. Most airlines pressurize their cabin between 6,000 and 8,000 feet pressure altitude. This lower-than-sea-level pressure expands my chest cavity increasing incision pain. All commercial flights hurt but long flights are very painful often requiring a dose of narcotic medication in flight. Not flying is the only remedy. Those having thoracic surgery have long complained of incision pain after commercial air flights and cabin pressure is the cause. Another secondary cause is extensive coughing and sneezing. Sneezing is particularly bad when it is a “surprise sneeze”. During the worst pollen events, I stay indoors and I try and avoid school age children to keep the chest colds in check, especially when school is in session. The last secondary cause I have the most control over: stress, anger and excitement. Admittedly, excitement is the easiest to control except when the Dallas Cowboys are playing my beloved Philadelphia Eagles. These two games a year are indeed stressful and since I live among cowboys, someone is going to be angry over the outcome. My wife reminds me when I complain too much that I am lucky to be alive. What’s a little pain given the alternative. She’s right. Doc reminds me to avoid scheduling things in the morning so I can sleep-in late if pain interferes. He’s right. Football season is right around the corner and it is a good thing games are scheduled in the afternoon and evening. Now if the Eagles start winning, everything will be fine! Stay the course.
  3. What Not to Say to a Cancer Patient By: Jane E. Brody What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right. But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?” “Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive. A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing. A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University. Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.” However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort. “I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.” What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?” As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’” Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer. Many people now use online sites like caringbridge.org to keep people up to date on their health and needs or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help. Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.” Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.” In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.” When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.” Among the many suggested “don’ts” are these: • Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.” • Don’t talk about other patients with similar cancers, even if they fared well — no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it. • Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer. • Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?” • Don’t offer information about unproven treatments or referrals to doctors with questionable credentials. • Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck. • Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it. • Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity. • Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care. This story was published on nytimes.com on 11/28/16. Link: http://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html?smid=fb-share&_r=0
  4. Patient Preferences Survey

    Are you a lung cancer survivor? Please participate in this 5-10 minute anonymous survey, and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community. https://www.surveymonkey.com/r/R25QHD7
  5. COLUMBUS HOPE SUMMIT A survivorship conference for anyone impacted by lung cancer Saturday, October 29, 2016 LOCATION The Boat House at Confluence Park 679 W. Spring Street, Columbus, OH 43215 FEATURED EXPERT SPEAKER David P. Carbone, MD, PhD The Ohio State University Barbara J. Bonner Chair in Lung Cancer Research Director, James Thoracic Center Professor of Medicine ABOUT COLUMBUS HOPE SUMMIT LUNGevity HOPE Summits are unique national and regional survivorship conferences that educate, empower, and create a community of support for lung cancer survivors. At HOPE Summits, LUNGevity serves as a bridge between patients, their families, and the medical and support communities. While lung cancer survivors are encouraged and invited to attend, caregivers and medical professionals wanting to learn more about lung cancer survivorship are also welcome. All conference sessions will be geared toward those living with a lung cancer diagnosis. The summit is free to attend, but registration is required. SESSION TOPICS Topics may include: Targeted Therapy Personalized Medicine Immunotherapy Living with Lung Cancer Survivorship Issues Survivors' Stories Advocacy Caregiving For more information, or to register online, click here.
  6. Are you a lung cancer survivor or caregiver? We invite you to join us Monday, September 12, 2016 for our first Living with Lung Cancer Support Network program. We created this program to provide a community of support, education, and hope to lung cancer survivors who reside in Northeast Florida. Group meetings are hosted the second Monday of each month at Ackerman Cancer Center and are free of cost to attendees. Caregivers are also welcome and encouraged to attend. For further information, please contact Eden Mock, MSW at 904-880-5522 eden@ackermancancer.com Living with Lung Cancer Network Flier 2.pdf
  7. It’s normal for someone diagnosed with cancer to experience feelings of sadness, fear, anger and grief. It’s when those feelings prevent you from functioning in your everyday life and you feel emotionally paralyzed in your situation for an extended period of time that you need to seek help. Cancer patients experience depression two times more than the general population and studies have shown that mental health and social well-being can affect the success of treatment. Those diagnosed with cancer have life plans that are interrupted, a change in physical activity and ability, role changes in relationships, and career, may experience a loss of self-image or sense of self. They also experience fears about the cancer growing within their bodies, anxiety about the success or failure of treatments, worry over their families and caregivers and may fixate on the possibility that their lives will be cut short from their disease. Those diagnosed with lung cancer have an additional set of issues facing them. Some may experience the stigma associated with the disease and experience anger or guilt, isolation or shame depending on whether or not they had a smoking history and whether or not they feel they are getting adequate medical and emotional support from their local communities. Lung cancer survivors may also feel outrage, anger and a sense of being forgotten because of lack of public awareness and support of the disease in the media, limited treatment options available for the disease and sparse funding that goes to research the disease. Depression is more than just the normal feelings of sadness. Depression is when an individual experiences at least one of the following symptoms for more than two weeks: Feeling sad most of the time Loss of pleasure and interest in activities you used to enjoy Changes in eating and sleeping habits Nervousness Slow physical and mental responses Unexplained tiredness Feeling worthless Feeling guilt for no reason Decreased concentration ability Thoughts of death or suicide Getting help for your depression can help your cancer experience feel less challenging; it may help your relationships with the people around you may give you back some sense of control over certain parts of your life. Visit the National Cancer Institute for more information on depression in cancer patients and call your doctor if you feel like you may be suffering from depression. ______________________ Did you experience depression with your lung cancer diagnosis? Share your tips on how you dealt with your depression by commenting below.
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