CindyA

Guidelines vs. Rules: Deviating from the Standard of Care When Strong Principles Lead You There January 21st, 2014 - by Dr. Jack West This week I found myself recommending surgery for a patient who had already undergone chemo and chest radiation, then more chemotherapy and more radiation, for limited stage small cell lung cancer (SCLC). To be clear, there is no standard role for surgery in this setting, no data to support it, and I can’t recall a situation in which I’ve felt surgery was an appropriate approach for previously treated SCLC. Nevertheless, his case was unique enough that not only did I feel surgery is clearly a compelling idea, but our multidisciplinary tumor board reviewed his situation and emerged with a clear consensus favoring surgery, at least if some additional components of his work up supports it. Though I and other experts here try to make decisions based on the best evidence and the national guidelines derived from them, we also recognize that there are special cases for which there is no good evidence to inform our decisions. In such cases, it’s important to recognize that guidelines are not the same as rules, and that it can be perfectly acceptable, even ideal, to go beyond the guidelines when the right principles lead us to a more “creative” approach. The patient in question is a 72 year old longtime smoking man who was diagnosed with limited stage SCLC in his right upper lobe in June of 2012. After receiving standard chemo and radiation to his chest tumor, he continued to have a persistent primary tumor visible on imaging. He was actually treated at another facility and went on to receive additional chemo for several months in a way that I don’t think I would have done, since it wasn’t clear whether this residual primary tumor represented viable cancer or dead/dying cancer after extensive treatment. Regardless, he continued to have repeated scans (PET/CT scans on every occasion, as is often done but often leads to very ambiguous findings and, I believe, a temptation to make unconventional decisions) that tempted his oncologist to keep advocating chemo, which the patient had a lot of difficulty tolerating, eventually developing neuropathy and weakness so severe he couldn’t walk without falling down and needed to use a walker to get around. After getting PCI and his scans continuing to show a residual PET avid primary cancer in the right upper lobe, he was referred to a thoracic surgeon I work with, who carefully considered the potential value of surgery but declined to do it because he felt that this man was too debilitated to safety tolerate the rigors of it. He was then referred to a radiation oncologist for additional radiation and received stereotactic body radiation therapy (SBRT)/Cyber Knife to the residual mass, based on a presumption that it represents ongoing viable cancer. The treatment was completed in late July of 2013. Since then, he has continued to be followed by another oncologist, who has continued to do regular PET/CT scans for surveillance. These have been essentially stable, but with residual metabolic activity and a visible mass, his oncologist now favors surgery to remove it. Over the past nearly 6 months with no treatment, this gentleman has recovered from many of the difficult side effects and has returned to a much more active life, no longer needing a walker, though still far weaker than he started. I saw the patient as a second opinion, reviewed all of these findings and discussed them with the surgeon, and we agreed that if a biopsy proves there to be residual viable cancer and a repeat brain MRI shows no new brain metastases, surgery in this very unusual case makes sense. Part of our confidence about the potential utility of surgery comes from the fact that it has been over 18 months since his diagnosis and about 9 months since his last chemotherapy, and his cancer still hasn’t demonstrated progression elsewhere. This makes us realistically hopeful that we won’t see new spread in the weeks or months just after surgery. You might ask why we’d be sticklers about a repeat biopsy. If interpreting a PET/CT after standard chemo and radiation is difficult, we’re learning that interpreting a PET/CT after SBRT approaches impossible. Specifically, we’re seeing that treated lesions look for all the world like residual viable cancer on a PET/CT even many months after they’ve been treated but may well just be treated, dead cancer. How do we know? Because we reviewed results from a surgery in a very similar case just a week ago who underwent surgery for a presumed residually PET-avid cancer after SBRT to an NSCLC lesion, with pathology subsequently showing no viable cancer at all. A key principle I always try to follow is to treat the situation you’re seeing, rather than being absolutely limited by the tissue diagnosis. Because cancer mutates over time, it doesn’t feel a need to conform to rigid rules, so neither should we. If an extremely unusual SCLC leads us to a situation in which surgery makes sense, we shouldn’t rule out the possibility just because there’s no place for it in the guidelines, which are for more usual cases. We just need to be diligent about not going far outside of the guidelines if it actually doesn’t make sense, such as if we don’t actually know that there’s viable cancer or there’s any evidence of disease outside of the primary tumor. This case discussion isn’t meant to imply that we should be doing surgery after chemo and radiation for SCLC. I do mean to convey, however, that the general approaches we recommend as clear standards of care aren’t meant to be inviolable. In individual cases, a personalized approach can be very appropriate, even if it transgresses the prevailing standards of care. Share this with your friends and family in the link below. http://expertblog.lungevity.org/

Choosing to LIVE with Lung Cancer January 22nd, 2014 - by Chip Kennett October 26, 2012. I was a 31 year-old father of a wonderful two year-old boy named Joe and my wife, Sheila, was 35 weeks pregnant with our baby girl, Crosby, when I was told I had Stage IV lung cancer. Prior to my diagnosis, by all accounts, I was considered to be healthy. Earlier in the year, I had received a clean bill of health from my general practitioner at the time of my annual physical and had recently competed in my second “Tough Mudder” of the year. “Tough Mudder” events are hardcore obstacle courses that also raise money for The Wounded Warrior Project. Team KennettThere was just that nagging, blurry spot in my right eye that showed up and wouldn’t go away. Since it had been a couple of years since my last eye exam, I scheduled an appointment with my eye doctor, who suspected a detached retina. After seeing several eye specialists and undergoing a series of tests, I was told I potentially had a melanoma in my eye, but it’s extremely rare for cancer to originate in an eye. Tumors in the eye are most likely a metastasis, so it was recommended I schedule an MRI and PET scan through my general practitioner. That series of events led my wife and me back to the same doctor’s office, where just a few months earlier I had passed my annual physical with flying colors, where we were told the results of the PET scan were “all lit up,” and that I had “cancer everywhere”— in both of my lungs, liver, lymph nodes, and bones, plus my right eye. A week later, a biopsy revealed I had non-smokers’, non-small cell lung cancer. In just three and a half weeks, I went from seeing a blurry spot to learning I was ALK+. Soon thereafter, I started taking the ALK inhibitor, Crizotinib (or Xalkori.) I immediately started to respond to the drug–my vision improved, and I was back to running within a few weeks. Unfortunately, after only three short months, the efficacy of the Crizotinib had worn off, and I found myself in the ICU with a pericardial effusion and pleural effusions in both lungs. The first day of my week spent in the hospital triggered the 30-day “wash out” period I had to undergo while my team of oncologists searched for a clinical trial I might qualify for, and would be close to home base and most effective in keeping the fires inside of my body contained. Knowing I had a very aggressive form of cancer and having to be chemo-free for 30 days was an extremely difficult time, but thankfully, we were able to locate and qualify for a clinical trial for a second generation ALK inhibitor in the drug expansion phase, LDK368, which I am currently still on. Despite the events of the last 14 months, Sheila and I consider ourselves to be so blessed. Blessed to have a family doctor we already knew and trusted implicitly, and who was very aggressive in assisting and moving us through those first few weeks. She is very frank, yet warm, and has had the misfortune of delivering some of the toughest news to us. In fact, I have been very fortunate to have amazing doctors throughout this entire process and believe having a good relationship with your doctor is a crucial component to receiving the best care. You have to be your own biggest advocate. Make your case personal. Get your oncologist and their support staff invested in your life. Learn the intricacies of your health insurance’s summary of benefits. If you aren’t comfortable with the care you are receiving, figure out a way to change it. When it comes to your health and your life, do not be afraid to ask as many questions as needed about your treatment options until you fully understand and feel comfortable with them. Effective treatment and professional care are only two parts, albeit essential ones, to successfully battling this terrible disease. I have learned having a solid base of emotional support is also important. My wife and children provide me with the strength and motivation I need on a daily basis. They propel me to keep moving forward, even when it is tough. No matter how poorly I may feel some days, my day is immediately brightened and my worries washed away – if only in that moment – when one of my kids is in my arms. My family keeps me present and engaged and constantly reminds me this life is exactly what I am fighting so hard to preserve. I also started going to see a therapist, and I would recommend this to anyone else. The birth of my son in 2009 was a magical time for Sheila and me when our lives were so full of joy and anticipation of the years ahead, but the birth of my daughter brought on an entirely different set of emotions. She was born in the same hospital where just a month earlier, I had my scans performed and where a piece of bone was removed from my hip for my biopsy. I was obviously grateful she was healthy–she was my little girl–but I started to ask questions, like what had she done to deserve a Dad who was going to need a miracle just to live long enough for her to remember me? Did all of these other dads of newborns in the maternity ward take for granted the fact that they were most likely going to walk their daughter down the aisle one day? I was angry. Talking to my therapist helped me move past the questions that had no answers, let go of the anger that was a waste of my time and energy, and focus on living in the present and to make the most out of every day I have left on this earth, no matter how short or long that time may be. And let me be clear, I truly believe I have many, many more good days ahead of me. Whenever I am having a bad day, because, let’s face it, they will always exist, I have just learned to put my head down and do whatever needs to be done to keep moving the ball down the field, because time spent feeling sorry for myself is not going to help anyone. As long as I keep doing that, I know this disease cannot stop me. Despite this diagnosis and prognosis, Sheila and I know we are blessed. We are blessed to have a strong marriage and two amazing, healthy kids, and as long as I still feel like a husband and father, I feel hopeful. Sheila Kennett writes about the family’s choice to LIVE with lung cancer on the blog, “Team Kennett: A Playbook for Living“

Our Commitment to Research LUNGevity Foundation is proud to be the largest lung cancer-focused private funder of research in the United States. Since 2002, LUNGevity-funded scientific research projects have totaled more than $16 million. This represents an investment in 100 projects at 56 institutions in 23 states. Whether we are supporting early-career scientists or established researchers, we work with top lung cancer experts to identify and fund promising and innovative research into the early detection and targeted treatment of lung cancer. You can help. Invest in research now or learn about other ways of supporting LUNGevity. Our Funding Mission We fund research to: Expedite the development of an effective early detection strategy to find all lung cancers while they are still localized and treatable, in order to prevent lung cancer-related death Identify therapeutic agents that provide customized genetic intervention for lung cancer, in order to extend patients’ lives and improve quality-of-life post-diagnosis Get Informed The government isn't focused on funding lung cancer research. Tobacco settlement money isn't funding lung cancer research. Take Action With your help, promising research will get a much-needed boost to reduce lung cancer mortality. Donate today. You can make a difference and get us one breath closer to the end of lung cancer. http://events.lungevity.org/site/PageSe ... 2_Research

This may be #7 on Everyday Health's website, yet it is number #1 on my list! There is nothing like a heated bathroom followed by a hot shower. What boosts your mood when you seem to be blue? Take a Piping-Hot Shower Ahhh — there’s nothing quite better than dipping into a warm, steamy bath. But the high temps may do more than just soothe you — research shows they can boost your mood and also fight loneliness. The Yale University study surveyed 51 students about their levels of loneliness and everyday habits, concluding that some people use physical warmth (like hot showers and roasting cups of coffee) as a substitute for social warmth. “People have a need for emotional warmth and affection,” says Raja. “When this comes in the form of hugging and touching, our basic needs can be met. When it is not, taking showers and baths that also increase body temperature can subsequently improve our mood. So, compared to emotional warmth, physical warmth seems to cause similar body and brain responses, and that’s good news for mood management!” http://ow.ly/sQ1WX

Hi everybody, I am in here several times a day, and I know a few others are on here quite often too such as you Lily, Diane, Randy, & Mike. Everyday I reach out to the new people who we haven't heard from and we have had a few pop back in. See the "Introduce Yourself" forum for some of the latest posts. Facebook is out there too but most of the intimate conversations are still happening here. I also post all of Dr. West's blogs here. We also reach out on Facebook and other social media platforms to encourage people to come in. We are definitely open to all suggestions. I feel part of the problem is that if even all of us who post here regularly reply to the new members it is still just a handful of us. I think the solution would be to have more of a crowd post replies and new posts within the forums, so there could be faster replies and more interaction within all of the forums. I know Katie is working hard to make this happen too. Please don't give up on us. We really appreciate all of you who come in daily or as much as you can. We know everyone's time is important and we are honored that you choose to spend some of it with us. Talk to you soon, Cindy A.

Thank YOU Diane!

Low Fat Mac & Cheese. Ingredients 3/4 cup(s) milk, fat-free evaporated 1 cup(s) cottage cheese, low-fat 1/2 cup(s) cheese, ricotta, low-fat 1/2 cup(s) cheese, cheddar, low-fat 1/2 teaspoon nutmeg, ground 1 dash(es) salt and black pepper, to taste 1 teaspoon cheese, Parmesan 1 tablespoon bread crumbs, fine, dry 1 pounds pasta, elbow macaroni, cooked Preparation 1. Preheat the oven to 350 degrees. Heat the milk in a saucepan over low heat. Add the cheeses until they melt, stirring constantly. 2. Stir in the nutmeg, pepper, and salt. Remove the cheese sauce from the heat. Add the cooked pasta to the cheese sauce and mix well. 3. Pour the mixture into a 2-quart casserole dish. Sprinkle with Parmesan cheese and bread crumbs. Bake the casserole for 15-20 minutes until bubbly and the top is browned. Nutritional Info (Per serving): Calories: 203, Saturated Fat: 1g, Sodium: 331mg, Dietary Fiber: 1g, Total Fat: 3g, Carbs: 28g, Sugars: 6g, Cholesterol: 14mg, Protein: 16g Exchanges: Starch: 2, Lean Meat: 1 Carb Choices: 2 http://www.everydayhealth.com/health-re ... ese-1.aspx

H1N1 is Back – What Should You Know if You Have Cancer? -Lynn Eldridge, MD (LungCancer.About.Com) Remember all of the to-do surrounding the H1N1 flu pandemic in 2009-2010? Well, it's January 2014 and ... H1N1 It's Back! The flu season is taking off, and according to the CDC, the predominant strain being isolated is H1N1. Currently 35 states are seeing widespread activity, and this marks the greatest number of cases since the 2009/10 pandemic. Since October over 2,500 flu related hospitalizations have been recorded in the United States. Will it be as bad as it was 4 years ago? Not necessarily. In 2009 H1N1 was considered a new strain of flu. We've now had 4 years for people to develop some immunity either through the vaccination, or from having had the disease itself. But it's still a little early to speculate. What should you know if you're living with cancer? For one, you may be unable to have the flu shot, for example if chemotherapy has done a number on your immune system. But even if you have the flu shot, it may not be as effective as it would be without cancer, again due to changes in your immune system. Practicing prevention like careful hand washing is as important as ever. But what if you should develop the flu? There are a few medications doctors can prescribe to lessen the symptoms and shorten the duration of the flu. These are by far most effective if started within a day or two of symptoms, so make sure to let your doctor know if you suspect you may have the flu. What else should you know about the H1N1 flu and cancer? Check out this article for some ideas. http://lungcancer.about.com/od/livingwi ... atment.htm

Living With My Decisions January 17th, 2014 - by Kenneth Lourie On multiple occasions throughout my nearly five years of being treated for stage IV, non-small cell lung cancer, my oncologist has given me opportunities to stop and/or take a break from my treatment, or to consider alternatives to the normal protocols – for the expressed (literally) purpose of sustaining/enhancing the unexpected, above-average quality of life I have mostly experienced during my nearly non-stop, every three-week chemotherapy infusions which began in early March, 2009. The goal being to enable me to enjoy my life and not be subjected to/beaten down by the ravaging and debilitating effects of chemotherapy. As many of you probably know, chemotherapy is hardly a cure for what cancer ails you; in many cases, it is the last line of a faltering defense against the indefensible: a terminal prognosis. When your oncologist characterizes you as “terminal,” and gives you “13 months to two years” to live, the presumptions, the logic, the understanding is that whatever treatment you endure is not likely to save your life. Stage IV means inoperable, incurable (though “treatable”); words which are not used indiscriminately. They are used, as is the “stage,” to define a set of medical conditions that are extremely serious and based on the most current and best-known medical knowledge available at the time, and are not likely to result in a happy ending. As I’ve said previously, “being called ‘terminal’ is all it’s cracked up to be.” In spite of everything – all the discouraging words, all the chemotherapy, all the varying lab work (good and bad) and miscellaneous results from CT Scans, MRIs and the occasional bone scan and X-Ray – I have managed to outlive the original prognosis offered by my oncologist. My body has held up to the rigors of chemotherapy (I’ve never been a candidate for radiation as my tumors are too numerous and too spread out for the targeting strategy to benefit me, if I understand the process clearly) amazingly well. Still, there are limits of effectiveness. Your body can only take so much before it begins to work against you. Nevertheless, when offered a respite from treatment and given an opportunity to live life to the fullest and enjoy what time I have remaining – not hooked up to an I.V. – I have always opted to continue treatment. Regardless of the oncologist’s motivation in suggesting these breaks (though they are discussions we have together; it’s hardly unilateral, one way or the other), it’s always felt to me as if I were giving up and/or giving in. Diagnosis-to-date/treatment-to-date, it’s never appealed to me. In retrospect, I imagine I was being naive to think that my overall very manageable quality of life as a lung cancer patient/survivor would/will continue, so why stop now when the worst-case scenario seems to be have been/is a bit overstated? I don’t know if that’s hubris on my part, stupidity or wishful thinking (certainly that), but my feeling is that if I think I’m going to die, I probably will (sooner rather than later is what I mean). And not that this whole strategy of mine has been about trying to out-think cancer by being positive and optimistic; hardly. But I will admit this: given my current alive-and-reasonably-well status, I wouldn’t say it’s worked against me! __________ http://blog.lungevity.org/2014/01/17/li ... decisions/

1. About 3,400 people are diagnosed with cancer each day in the United States, and many must still cope with the demands of daily life while treating their illness. If you're wondering what you can do to help a friend or relative who has become a cancer patient, there are many ways to lend a hand. These suggestions for providing medical, emotional, and practical support can ease a loved one's burden and show you care. 2. Cancer Caregiving: Running Errands Cancer patients need to conserve their strength, and daily life contains so many chores that must be done. You can help out by shouldering some of your loved one's daily responsibilities: Walk her dog, refill her prescriptions, or pick up her kids after school. When you buy your groceries, offer to do her shopping as well. Suggest making phone calls for her or setting up an online page if she's overwhelmed by people concerned about her cancer condition. 3. Going to Doctor Appointments Just volunteering to drive someone to the doctor’s office is helpful, but it's always good to have a second set of eyes and ears at doctor visits. You can provide invaluable caregiving assistance by accompanying your loved one to these appointments. Before the visit, write down all of his questions and concerns to discuss with the doctor, and while you are there make sure all of them are addressed. Take detailed notes so you have an accurate record of what was said, including any specific directions or recommendations. 4. Cancer Caregiving: Helping Hands There are tons of chores you can help out with around your loved one’s home to help her conserve her strength. Do a load of laundry. Cook a nutritious meal, then wash the pots and pans. Run a vacuum cleaner and dust. Take out the garbage. Mow the lawn, rake up fallen leaves, or clean up the backyard. Of course, you can’t provide all this cancer care by yourself, but you can marshal other friends and family members to help, possibly creating a schedule to divide the tasks. 5. Cancer Caregiving: Lending an Ear Some of the best caregiving you can provide involves just sitting and listening to your loved one. That's not as simple as it sounds. Let him open up about his emotions, fears, and concerns, but try not to automatically interject reassuring words or dole out advice. If you do that, you might interrupt his thought process or cause him to shut down. The best encouragement comes from reminding him of his special qualities or of other challenges he has bested. Rather than offer advice, discuss choices and allow the cancer patient to talk them through to reach the best decision. 6. Cancer Caregiving: Bookkeeping Services Cancer is an expensive disease to treat, and an exhausting stack of bills will grow over time. You can help by organizing these bills and figuring out what is due when. You also can review the patient’s health insurance and make sure that she is getting all of the coverage she is entitled to. If she is behind on payments, you might call hospital administrators on her behalf to work out a payment plan. You also can help your loved one apply for financial assistance. 7. Cancer Caregiving: Keeping Up Morale Cancer patients can feel isolated and lonely. They also can become run-down by a constant trickle of visitors coming to their door. You can help by coordinating visits of groups of friends or family, so the patient can remain connected without becoming overwhelmed. You also can arrange for people to write cards and letters of support or send flowers. 8. Cancer Caregiving: Getting Educated You can provide a lot of help to a cancer patient just by using your brain — and the Internet. Research the type of cancer she has, learning as much as you can so you can help answer questions and provide information when it's time to make crucial decisions. You also can learn about the medications that have been prescribed and help keep track of the dosing schedule. 9. Cancer Caregiving: Finding More Support There are many forms of emotional support out there for cancer patients, but your loved one may not know about them. Ask hospital social workers about cancer support groups in the area, or look for online support. If more help is needed, suggest an oncology social worker or counselor to help the patient cope with feelings and emotions. You may not personally be able to provide all the assistance the cancer patient needs, but you can help find additional resources. ^ WE ARE SO GLAD YOU FOUND Lung Cancer Support Community. If you are not currently a member, please sign up today! What tips would you tell a new Caregiver? http://www.everydayhealth.com/cancer/ph ... x#/slide-8

Hi Amy, How are you doing? I hope you will post soon, so we will know how you are. Sincerely, Cindy

First of all I'd like to start off by telling MIKE, that I literally laughed out loud in my office about your go cart comment. I so needed a laugh. I'm glad you seemed to have found a good remedy for you. Please keep us posted on what your doc reports. Katie, thank you for opening the air yesterday. I'm having an okay week. My daughter is getting pushed around at school and she has a test on the Civil War on Monday. That's a lot of stress for a 7 year old. She is resilient and I know she will stand tall to this bully and STILL ace her upcoming test. I believe it is situations like this that mold you into who you really are. Ending on a brighter subject, I bought a step stool that is about 4 inches off the ground for my office. I put it under my desk. So now when I am at the computer my back wont strain. Believe it or not, I am SO darn happy about it. I found some happy yesterday. What is your happy?

FIELDWORK DALLAS PAID MARKET RESARCH For this particular project, they are interviewing Patients, Nurses, and Caregivers (friends and family of Patients) with Lung Cancer in the Dallas/Fort Worth area. All participants will be paid for their time. There are 2 types of interviews that they are scheduling. One type is for patients, aged 18 or older. Another is for the Caregivers and Nurses of patients who have been affected from Lung Cancer. Both types of interviews are being scheduled January 23rd, or January 24th. Participants will be compensated a minimum of $150 for their time and opinions. If you are interested, and believe that you may be able to help us, please fill out this online prescreen or forward the link to anyone you know in the Dallas area who may be interested! http://www.surveygizmo.com/s3/1489446/D ... lth-Issues or you can call us at 972-866-5810, leave us your name and number along with the best time to reach you. If you are able to refer any Patients, $100 compensation will be paid for every qualified participant that participates. Note: This referral applies to the Patients groups and not the nurses or caregivers. In order to be compensated please have them provide the name and phone number of who is referring them so we can be sure the correct person receives the compensation. Privacy Policy YOUR PRIVACY IS IMPORTANT TO US. Fieldwork Dallas Inc. respects the privacy of respondents and individuals who respond to electronic information requests. When you register to become a market research participant with Fieldwork Dallas Inc., your contact information and other demographic information is added to our database of potential market research participants so that we can contact you when a market research study is being conducted that you may qualify

Being Present Now January 15th, 2014 - by admin Introducing a new series of blog posts. These young adults were asked, how did it feel to learn your young friend had been diagnosed with lung cancer? written by Alison Martin Denial is how I live with watching a friend, who I consider family, fight terminal lung cancer. In her mid 70s my grandmother died of emphysema, which accompanied her lung cancer. My grandmother, my favorite relative, was a life long smoker. Her cancer was horrible, awful news, but not surprising. Kim, my physically fit, younger than me, 30-something friend, being diagnosed with lung cancer – that was a terrible, unbelievable shock. I need to process and communicate about emotional events. Since Kim’s diagnosis in 2011 I’ve been grateful for her openness and directness about her disease, her treatment, her struggles, her fight, and her advocacy. I’m grateful that I can say, “this might be a stupid question, but…” I’m grateful that she has the patience to explain, or re-explain, to me the complexities of her cancer. We’ve also had a few conversations about death and dying – I’ve had “what does it all mean” death and after-life discussions with friends previously, but it is an entirely different experience talking with someone who is facing their mortality in a way that I am not. I sometimes start sentences with “Please tell me if this offends you…” or “I used to think that…” I don’t remember all of the details of these conversations with Kim, but what I do remember is that our dialogue was heart-felt and authentic. Kim’s fight has provided new meaning to the idea that “life is short.” It’s made me re-examine my life and ensure that my energy and resources are going into the people and things that are important to me. Selfishly, I’m grateful to Kim for that perspective (but I also think she’d be happy to know she’s contributed to my life in that way). So where does denial come in? I can intellectually process that Kim has cancer, that she has been taking a daily chemotherapy drug and anti-nausea medication, that she is about to switch to a new treatment because she has tumor growth. Probably like the thousands of other people affected by loved ones with cancer, I operate on the belief that Kim is going to surpass expectations for longevity and treatment and be in my life for years. My coping mechanism is challenged, however, when (cancer sucks!) things happen like whole brain radiation. The brain tumors were a rude awakening because I had my friend: she was climbing, we were doing fun things – I had comfortably settled into a mindset of “Kim can fight this.” And then cancer reminded all of us that it was still there. I’m not okay knowing that sooner than I want it to happen my friend is going to die. But I have now with Kim, and what’s most important for me is to be present with her now and help support her in her fight – that helps me believe that I will have her in my life for a longer period of time. http://blog.lungevity.org/2014/01/15/being-present-now/

Some our our survivors lent their voices to the FDA last spring/summer. Here is the summary: The Voice of the Patient: A Series of Reports from FDA's Patient-Focused Drug Development Initiative http://www.fda.gov/ForIndustry/UserFees ... 368342.htm

“Mor-Tality” or Less January 13th, 2014 - by Kenneth Lourie Meaning, in my head anyway, the future and what there is left of it. More specifically, I mean life expectancy. When you’re given a “13-month to two-year” prognosis—at age 54 and a half, by a cancer doctor, your cancer doctor—the timeline between where you are and where you thought you’d be when becomes as clear as mud. Yet not planning for the future, a future that previous to your diagnosis was thought to be guaranteed (based on family/patient history) creates a negative when all health care professionals advise being positive. Anecdotal evidence suggests that acting like you have a future helps result in some unexplainable way in you/the patient having one. Over the last month, I’ve had some time-sensitive and planning-for-the-future-type decisions/expenditures that on paper at least—given my terminal diagnosis, could be construed as money poorly spent. Nevertheless, since it is my life—and I’m trying to live it, I went ahead and signed up and paid to have these future benefits in place (starting at the present), and I’m not talking funeral arrangements, either. What I’m referring to are everyday/ordinary expenses where your dollars guarantee years ahead rather than years behind: one-year anti-virus coverage for my computer—until September 14, 2014; two-year coverage until September 30, 2015, for my Life & Health Insurance from the Maryland State Insurance Administration (I used to be an active agent in my previous career); and finally, six-years renewal (although one has no choice, really) until September 30, 2019, for my new Maryland driver’s license. Certainly, in my mind and experience, these renewals are sort of necessary, perhaps more so for the present than the future, but since I can’t know for sure, I felt as if hedging my bets was the prudent course of action. And though not renewing these three obligations was not really practical, given the realities of my life and its related responsibilities, the planning-for and purchase-of them did give me pause to consider my future and my expectations for it. Having terminal cancer will do that to you: stop you in your tracks and cause you to measure (almost literally) every step you take. It’s not exactly fun, but it is a living, and I’m particularly happy to be the one doing the living. And during these past few weeks, I did stop, and I hemmed and hawed too and decided to pay it (and my life) forward; to invoke and rework a concept made famous by a movie of the same name starring Haley Joel Osment. So I’m now officially paid up—for a few years. If I think too much about what’s happened to me (stage IV non-small cell lung cancer) and why, I fear it will weaken my resolve. A resolve which is short on facts but really long on feelings. Feelings which I’ve become accustomed to having and believing. I have to believe in something, and believing I have a future is the best way I know how to turn these feelings into facts. What do you believe in? _____________________________________________________________________________ “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 http://www.connectionnewspapers.com. (key word, Lourie) http://blog.lungevity.org/2014/01/13/mo ... y-or-less/

The Caring Ambassadors Program Lung Cancer Medical Writers Circle January 2014 How to Apply for Social Security Disability with Lung Cancer Mollie Clarke, Writer for Social Security Disability Help. If you have been diagnosed with lung cancer and can no longer work, you may be eligible to receive financial assistance in the form of Social Security Disability benefits. These benefits-offered by the Social Security Administration (SSA)-can be used to cover the cost of daily expenses and medical care. This article will provide you with a step-by-step guide to applying for disability with lung cancer. Step 1: Know Your Options There are two main federal disability benefit programs in the United States. These benefits are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Below you will find a brief description of each: SSDI is a type of benefit offered to disabled workers who have paid Social Security taxes throughout their careers. The SSA measures eligibility for SSDI in 'work credits'. Essentially, work credits measure employment history, income you have earned, and taxes you have paid. To learn more about SSDI and work credits click, here: http://www.disability-benefits-help.org ... rance-ssdi. SSI is different from SSDI in that it is awarded based on an applicant's financial need. To qualify, applicants must have a severe, long-term health condition and must fall within the financial parameters outlined by the SSA. This program is often a good fit for individuals who do not have the employment history to qualify for SSDI benefits. Learn more about SSI eligibility, here: http://www.socialsecurity.gov/ssi/text- ... y-ussi.htm. Unfortunately, if you do not meet the requirements for either program, your application for disability benefits will not be approved. Step 2: Research the Medical Requirements Once you have determined which disability program is the best fit for your needs, you should familiarize yourself with the SSA's medical requirements. These requirements can be found in the official manual of disabilities-often referred to as the Blue Book. The Blue Book outlines all potentially disabling conditions and is used by the SSA to determine an applicant's medical eligibility. Lung Cancer is listed under Blue Book section 13.14-Malignant Neoplastic Diseases of the Lungs. To qualify for Social Security Disability benefits under this particular listing, applicants must provide medical evidence that demonstrates the following: 1. Non-small-cell carcinoma that is inoperable, unresectable, or metatstatic disease to or beyond the hilar nodes; OR 1. Small-cell (or oat cell) carcinoma; OR 1. Carcinoma of the superior sulcus (including Pancoast tumors) with multimodal antineoplastic therapy. The SSA will consider this type of lung cancer eligible for disability benefits until at least 18 months from the date of diagnosis. Thereafter, they will evaluate any residual impairment(s) under the criteria for the affected body system. As you can see, the SSA's Blue Book is written using very technical and medical terminology. If you do not understand the requirements or aren't sure whether you meet them, schedule an appointment with your doctor. He or she will understand the Blue Book requirements and can give you a better understanding of your eligibility. Step 3: Prepare for the Application Process As stated in the previous section, it will not be enough to simply meet the Blue Book requirements, you will also need to collect and submit medical evidence to validate your claim. This should include documentation of your lung cancer diagnosis, reports of any treatments, documentation of your response to treatments, surgical notes, medical images, and written statements from your doctors. You will also need to provide information about your employment history, taxes, and income. For a complete list of the items you will need, visit the following page: http://www.socialsecurity.gov/disabilit ... 0Adult.pdf Note that if you cannot find or access certain information, the SSA will help you do so. However, this may take additional time and could potentially slow down the decision making process. Step 4: Submit your Social Security Disability Application Once you are prepared to begin the application process, you can fill out the necessary forms online or by telephone with a representative from your local SSA field office. Paperwork will include the basic application form, the adult Disability Report, a form to help understand your limitations, and a form asking permission to contact your doctors for additional information. Be sure to complete each of these forms with as much relevant detail as possible. It is important that your responses give the SSA insight into your daily life with lung cancer. If, at any time, you feel confused or overwhelmed, feel free to take breaks or ask questions. Step 5: Waiting for a Decision It can take as little as three months and as long as one year to receive a decision regarding your application. Fortunately, some types of lung cancer qualify for expedited application processing under the Compassionate Allowance initiative. If you meet the Compassionate Allowance requirements, it is possible to qualify for disability benefits in as little as ten days. View the following listings to see if you are eligible: • Non-Small Cell Lung Cancer • Small Cell Lung Cancer You are not required to request Compassionate Allowance processing nor will you have to submit additional paperwork. The SSA will evaluate your application and will process it accordingly. If you are approved, you will receive a letter from the SSA outlining your award and payment schedule. Expect the SSA occasionally review your claim to see if you continue to be eligible for benefits. Unfortunately, more than half of all initial applications are denied. If this happens to you, do not give up. You are allowed to appeal the SSA's decision. Use the appeals process as an opportunity to strengthen your claim and supply the SSA with additional information. Though applying for Social Security Disability benefits may seem like a complicated process, these benefits exist to make your life easier and ease your financial difficulties-allowing you to focus on your health.

Getting the Most Out of Nutrition Counseling During Cancer Treatment January 13th, 2014 - by Jessica Iannotta Nutrition counseling has a tremendous value in helping patients and caregivers develop and manage a healthy nutrition plan. It has been demonstrated that nutrition counseling before, during, and after cancer treatment can help to improve outcomes. How to select the right expert: The title “nutritionist” is not a regulated or licensed professional title. Therefore, anyone can call themselves a nutritionist. It is important to only seek nutrition advice and participate in counseling from a Registered Dietitian (RD). An RD has had specific training in food and nutrition and has passed a national exam. He or she is also trained to provide Medical Nutrition Therapy (MNT), an evidenced-based nutritional treatment for your specific disease. Specific to oncology, it is also important to select an RD who specializes in oncology nutrition. You can look for the title “Certified Specialist in Oncology Nutrition” or “CSO” after his or her name. This signifies that the RD has had additional experience and training in oncology; a minimum of 2,000 hours are required in addition to passing a national exam with recertification every 5 years. If you are unable to locate an RD in your area, select the “Find a Nutrition Professional” link to find an oncology nutrition professional in your area. If you do not seek nutrition information from the correct source, you risk receiving incorrect or potentially harmful recommendations during cancer treatment. What to Discuss With a Nutrition Professional A typical nutrition consultation will involve several aspects. First, the RD will review your medical records for pertinent nutrition-related issues. He or she will then interview you and ask you questions related to your diet history, medical history, medications, allergies, and nutrition-related symptoms. He or she may also perform a nutrition focused physical examination that examines your oral cavity, height, weight, and body fat percentage. After taking into account all of this subjective and objective information, the RD will design a meal plan and nutrition recommendations specific to your individual nutritional needs. He or she will then ask you to follow-up in a reasonable amount of time in order to achieve the goals that have been set for you. You may be asked to keep a diary of your symptoms or of the foods that you eat in order to help the RD assess how you are meeting your goals. Key points to remember: Always seek information from a Registered Dietitian (RD), preferably one who specializes in oncology nutrition (CSO). Be sure to inform and coordinate with your medical team to implement the recommendations that your RD has provided to you. Follow-up with your RD in a timely fashion to ensure that you are able to meet your nutrition goals Keep a food diary of your symptoms or the foods that you eat in a typical day; this will help your RD provide recommendations that are individualized to your nutritional needs. About Jessica Iannotta: Jessica A. Iannotta, MS, RD, CSO, CDN, Chief Operating Officer. Jessica is a registered dietitian and certified specialist in oncology nutrition (CSO). She studied nutrition at Cornell University and completed her dietetic internship at NewYork Presbyterian Weill Cornell Medical Center. She obtained her Master’s degree through the University of Medicine and Dentistry of New Jersey. Jessica has worked in inpatient and outpatient oncology settings since 2001 and currently works part time at North Shore-LIJ Monter Cancer Center. Jessica is in charge of all operations including clinical and culinary operations ranging from menu development to evidence-based website content, relationships with registered dieticians and social workers and developing processes and protocols for intake, management and outcomes analysis of patients. http://blog.lungevity.org/2014/01/13/ge ... treatment/

YES, it CAN be true! All you need is a few ingredients. You probably already have some of these in your pantry! Whole Wheat Tortillas - lay them on top of your toaster for a slight crunch 1 (per person) Egg whites (or a couple of regular eggs) Chopped Onions Chopped tomatoes Chopped chilis or you can use diced bell pepper (or celery if spicy isn't your thing) 2TBS - Salsa

Do you use Amazon? LUNGevity is proud to be a part of the Amazon Smile Program. Amazon will donate .5% of most purchases to support lung cancer research if the buyer first goes to this link before making his or her purchase: http://smile.amazon.com/ch/36-4433410 It's easy. Just log into Amazon and click on this link. Support lung cancer research every time you shop! *SHARE*

This month is Radon Awareness Month. Read more: "A Risk You Can Fix: Protect Your Family’s Health by Testing Your Home for Radon Gas in 2014" A Risk You Can Fix: Protect Your Family’s Health by Testing Your Home for Radon Gas in 2014 / 21,000 Radon-Related Lung Cancer Deaths Each Year Release Date: 01/06/2014 Contact Information: Alison Davis (News media only), davis.alison@epa.gov, 202-564-0835, 202-564-4355; EN ESPAŇOL: Lina Younes, younes.lina@epa.gov , 202-564-9924, 202-564-4355 WASHINGTON – As Americans across the country look for ways to improve their health this New Year, the U.S. Environmental Protection Agency (EPA) is highlighting radon testing and mitigation as a simple and affordable step to significantly reduce the risk for lung cancer. Radon is a natural colorless, odorless radioactive gas, and is the leading cause of lung cancer among non-smokers, but testing for radon and reducing elevated levels when they are found can make your home healthier and safer. “Testing for radon is an easy and affordable way to protect your family’s health,” said EPA Administrator Gina McCarthy. ”Radon is a radioactive gas that can be found in homes all across the country; the only way to know if your home has high levels is to test it.” Part of EPA’s radon action campaign is to remind people to “Test, Fix, Save a Life,” and to recognize every January as radon action month. - Test: All homes with or without basements should be tested for radon. Affordable Do-It-Yourself radon test kits are available online and at home improvement and hardware stores, or you can hire a qualified radon tester. - Fix: EPA recommends taking action to fix radon levels at or above 4 picoCuries per Liter (pCi/L) and contacting a qualified radon-reduction contractor. In most cases, a system with a vent pipe and fan is used to reduce radon. Addressing high radon levels often costs the same as other minor home repairs. - Save a Life: 21,000 Americans die from radon related lung cancer each year. By fixing elevated levels in your home, you can help prevent lung cancer while creating a healthier home for you and your family. Taking action to test and fix high levels of radon gas is not only a strong investment for your health, but also for your home. Radon test results are a positive selling point for those putting a house on the market and in many areas is a required part of real estate transactions. In addition, if you are looking to build a new home, there are now safer and healthier radon-resistant construction techniques that home buyers can discuss with builders to prevent this health hazard. More information on how to test, find a qualified radon professional, obtain a test kit or contact your state radon office is available at http://www.epa.gov/radon or by calling 1-800-SOS-RADON.

A doctor like this can be hard to find. Do you have "professional closeness" with your doctor? Tell us what makes your doctor so special. I started kissing patients in med school. And I haven’t stopped. During my third year pediatric rotation, I used to stay up late at night in the hospital, holding sick and dying children. I’d lift them from their cribs, kiss them, and sing to them, rocking them back and forth until they fell asleep. One day the head of the department pulled me aside. He said that I was a doctor when my patients needed a doctor and a mother when they needed a mother. Twenty years later, I’m still mothering my patients. I’m a family physician born into a family of physicians. My parents warned me not to pursue medicine. They worried that big government would kill the small-town physician. But I love being a family doctor. And I love my patients. I hug them and kiss them, and I do housecalls. And most patients call me Pamela or sweetie, or honey. They all have my home phone number. I’m on call 24/7, but I never feel like I’m working. I’m not good with boundaries. I’m never sure when work ends and play begins. It all feels the same to me. Many of my patients are friends. I do their physicals and eat over their homes for dinner. I’m not a fan of professional distance. But I’ve been trained to maintain distance from patients. How can I remain distant when I’m looking deep inside people in places nobody has been before? How can I remain detached when delivering a mother’s first baby, saving a brother’s sister, or helping a child’s grandfather die? Apparently maintaining a safe distance from patients will help my objectivity, limit favoritism, maintain clear sexual boundaries, and prevent exploitation. But patients today don’t want professional distance; they want professional closeness with a doctor who has a big heart and a great love for people and service in a clinic where people feel warm, nurtured, loved and important. And I want to be that kind of doctor. The truth is: I can’t always stop patients with heart attacks from eating bacon double cheeseburgers. I can’t always stop smokers from smoking. I can’t always stop little kids from dying. I can’t always cure, but I can always care — and kiss my patients. Pamela Wible pioneered the community-designed ideal medical clinic and blogs at Ideal Medical Care. She is the author of Pet Goats and Pap Smears. http://www.kevinmd.com/blog/2013/12/cure-care.html

Hi everyone! What is your go to snack when you are in between meals? Here are a few ideas that are under 200 calories. As always make sure to check the serving size on the label. (Please ask your nutritionist what is best for you.) Almonds, homemade beef jerky, Weight Watchers cheese sticks, popcorn, fruit, & Nature Valley dark chocolate protein bars are some of my favorite go to snacks. (Please ignore the fact that it says it's for preschoolers.) http://www.choosemyplate.gov/preschoole ... ideas.html

The 80-inch screen in the meeting space at the Willamette Valley Cancer Institute on Country Club Road blinks to life. Dr. Benjamin Cho, a soft-spoken oncologist, pulls up the latest CT scans of his patient, Doug Penn. Two images taken five months apart, almost identical and side-by-side, fill all 80 inches. At first, the images look like black holes marred by gray and white blobs; two arches that resemble the tentacles of an octopus frame each photo. The “tentacles” are actually Penn’s ribs, Cho explains. And the images are actually a cross-section of Penn’s chest cavity. In the center of all the “blobs” is the tumor. Penn was diagnosed with lung cancer, specifically non-small cell adenocarcinoma, in June 2012. The good news about this tumor, as shown by the photos, is that it’s shrinking significantly, thanks to an experimental drug developed by Swiss drug maker Roche. The other good news? “We’re getting smarter about cancer,” Cho says with a smile. Cho admits that cancer is difficult to outsmart — in Penn’s case his cancer cells have a protein called PD-L1. “Basically, it’s a cloaking protein. It disguises the cancer from the immune system,” Cho says. Our immune systems are like sentinel guards, he says. They guard the body, scanning for and attacking anything that’s foreign. “But cancer is smart, so it shows this protein and says, ‘Hey, immune system, I’m part of the normal body, just ignore me.’ So the immune cell comes by and says, ‘Yep, you’re part of me — nothing to see here, I’m moving on,’” Cho says. This cloaking protein allows the cancer to grow in the body undetected, until it shows itself in other ways. I want a new drug It was a persistent cough that first brought Penn, 63, in to see a doctor in 2012. Yes, he was a former smoker, but he had quit more than 20 years ago, led a healthy lifestyle and was in the middle of training for a marathon when the cough wouldn’t go away. Doctors saw through the cloaking protein PD-L1 and recognized the cancer immediately. In addition to the tumor that was found on his lung, the cancer had spread to a lymph node, ensuring that surgery was not an option to remove the cancer. Instead, Cho recommended what he refers to as the “atomic bomb” combo of chemotherapy and radiation. Penn’s cancer responded to the treatment initially, shrinking the tumor and eradicating the cancer in the lymph node. “But it started to grow again relatively quickly,” Penn says. Luckily, Penn wasn’t out of options. When he had first met with Cho upon being diagnosed, the oncologist mentioned there were exciting things on the horizon of cancer treatment. Indeed, there had been a study where medication was used to uncloak PD-L1, exposing it as a cancer cell and using the body’s own immune system to fight the cancer. At the point when Penn was first diagnosed, the study was in its first phase, in which researchers were trying the drug MPDL3280A, also known as anti-PD-L1, on all types of cancer to see if any specific ones responded. “They found that 20 percent of all these people with end-state cancer had a response to this (treatment), and they found that people with lung cancer had a response,” Cho says. The trial moved to the second phase, in which a more refined set of patients are given the new drug and compared to other patients given chemotherapy. Penn is healthy, has a good immune system and is strong enough to receive chemotherapy — these criteria and more were used to determine if he was a candidate to be included in the second phase of the study. “We were on pins and needles there when we were trying to figure out which one Doug was going to get, and luckily he got the research drug,” Cho says. “Why not me?” Penn is one of six patients at Willamette Valley Cancer Institute and 180 in the world who are a part of the study. If the former number sounds high, it’s because it is. “We’re one of the higher accruing centers in the world in Eugene, so we’re really ramping up our research program because of this (study),” Cho says. Penn received his first treatment in August and will receive a total of 17 over the course of the study. It’s administered intravenously, much like chemotherapy, and he comes in every three weeks for treatment and every six weeks for another CT scan to chart the tumor. His scans show progress; Cho estimates the tumor has shrunk about 40 percent. However, Cho stresses the point of the research study isn’t to wipe out every cancer cell. “If that happens, that’s great, but basically we’re looking at a response and shrinking down, and the other thing it’s looking at is to see if people live longer. So if it shrinks down the cancer, and it makes people live longer, that’s success for the drug.” As for Penn, he is feeling well and says he hasn’t really experienced any side effects from the new treatment. He regularly hikes five miles a day, rides his bike almost everywhere, practices yoga regularly and eats healthy. “There was no ‘why me?’ (when diagnosed), because why not me?” Penn says. “Why shouldn’t it be me? I think I feel more like, ‘why me?’ because I feel so fortunate to be in this study, why am I so fortunate to do this?” If the results of the study overall are good, it could mean big things for the way doctors look at and treat cancer in the future. “This is a therapy, and we have a whole bunch of therapies that are similar,” Cho says. “So these are new treatments where we can help preserve quality of life and hopefully extend life, too. “The Holy Grail is if we can get a treatment to hopefully stimulate the immune system to potentially wipe out cancer that already had spread. Whether this is going to do it, I don’t know, but this is a promising step toward that.” Jackie Varriano is a Eugene freelance writer. Reach her at jackievarriano@gmail.com. http://www.registerguard.com/rg/life/he ... t.html.csp

8 ounces fettuccine 1/4 7 ounce jar oil-packed, dried tomato strips or pieces 1 large zucchini or yellow summer squash, halved lengthwise and sliced (about 2 cups) 8 ounces chicken breast meat, cut in cubes 1/2 cup finely shredded Parmesan, Romano, or Asiago cheese (2 ounces) Black pepper, freshly ground 2. Meanwhile, drain tomato strips, reserving 2 tablespoons oil from jar; set aside. In a large skillet, heat 1 tablespoon reserved oil over medium-high heat. Add zucchini; cook and stir 2 to 3 minutes or until crisp-tender. Remove from skillet. Add remaining reserved oil to skillet. Add chicken; cook and stir 2 to 3 minutes or until no longer pink. Gently toss zucchini, chicken, and tomato with cooked pasta. Sprinkle each serving with cheese and season to taste with pepper. Makes 4 servings. Note Dietary Exchanges: 2 starch, 2 vegetable, 2 very lean meants, 2 fat. nutrition information Per Serving: cal. (kcal) 381, Fat, total (g) 14, chol. (mg) 40, sat. fat (g) 1, carb. (g) 40, fiber (g) 3, pro. (g) 24, sodium (mg) 334, Percent Daily Values are based on a 2,000 calorie diet ChooseMyPlate.gov