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MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS Step 1 – Invest in sophisticated diagnosics before diagnosis If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening. Step 2 – Choose a good general practitioner Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there. Step 3 – Ensure your oncologist is a physician A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess. Step 4 – Learn about your disease At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions. Step 5 – Acquire a sanguine attitude quickly Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in! Step 6 – Any port in a storm There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm! Step 7 – Don’t believe the miracle cure The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment. Step 8 – Don’t try to tough it out I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too. Step 9 – Become a calendar maniac If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule. Step 10 – Choose to live When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage. Stay the course.

Sleep! I am fortunate, very fortunate, to be a long tenured lung cancer survivor. There is however, a nightly battle, a cyclic war, a nocturnal struggle that holds vast consequences - falling asleep. As a young man I could sleep anywhere. As a soldier, I learned to sleep whenever possible and got quite good at it. As a lung cancer survivor, sleep deserted me; what was once easy, requiring no thought, has become difficult in the extreme. Why? There are a multitude of reasons and all of them are related to my lung cancer treatment. All huddle under the general heading of chronic pain that is just painful enough to remind me of its presence. Well, having said that, there is one minor exemption - muscle cramping but that causes pain so it can huddle-up with the chronic stuff. Sleeping is one of those inconsequential topics that only becomes interesting when one survives the disease long enough to become sleep deprived. Then it acquires overwhelming importance. After living 12 years after diagnosis, and despite the best efforts of my doctors and care of my long suffering wife, I manage to sleep but 6 days in 10. I did a little googling and found this problem is more common that I once though. The National Institute of Health has funded a University of Buffalo nurse to conduct a study to determine how to improve lung cancer insomnia. Her idea is to use cognitive therapy and you can read about it here - http://www.buffalo.edu/news/releases/2013/12/008.html I'll be very interested in its outcome. How have I attacked my insomnia problem? My GP started me on Benadryl, an antihistamine, that also is the primary ingredient in over the counter sleep medication. Then came prescription sleep medications (Ambien and Lunesta). Ambien worked for a short time but there were some nasty consequences - several scary zombie-like sleep walk sessions! I took exactly one dose of Lunesta and ended up in the emergency room displaying symptoms of anaphylactic shock. Here are things that work for me. We purchased a high-density foam mattress and an electrically adjustable bed. This elevates my upper body transferring weight away from my chest incision site - one of my chronic pain areas. I also wear wool-lined Ugg slippers to bed every evening. These act as "toe guards", keeping the weight of bed covers off of my feet, thus keeping Taxol toes in check. Wool is a superb cushioning material and I wear wool-lined shoes (also from Ugg) and wool socks to minimize foot pain while walking. My GP prescribed Xanax, initially .5mg, to be taken about 1/2 hour before bed. After 10 years, my nightly dose is 1mg and occasionally I add another .5mg when 1mg doesn't work. Xanax makes me drowsy, often just drowsy enough to forget about my chronic pain symptoms. It it doesn't work, then I experience a calm night of insomnia. I have a wide assortment of narcotic pain medication to choose from but I really don't sleep on narcotics and I'm often in a narcotic haze the next day incapable of meaningful activity. I hope you all are successful in your treatment to get to a point where you can complain about sleep.....

After a Lung Cancer diagnosis, it is normal and expected for even habitually calm people to worry about their futures. But what happens when those worries begin to “take over”, interfering with your ability to enjoy your life? Most of us are familiar with the quote by Barbara Cameron, “Worry about tomorrow steals the joy from today”. However, as cancer patients, our relationships with worry are usually more complicated than that. Worry, like any uncomfortable feeling, is often a signal that you have a need that has not been met. So, when you have a thought connected to a specific worry, try to dig under the surface of that thought. For example, “I’m worried that my scan will show progression” or “I’m worried that I won’t survive” are thoughts that, on the surface, we can’t do anything about. They are reasonable to have, but “joy stealers”, so to speak. Well, what if the unmet need behind those worries is “I need my fear validated”, “I need to be heard” or even “I need a hug”? Worries can also be motivating and empowering. For instance, worry about your children’s future might drive you to assign a legal guardian, should something happen to you. Worry about the lack of funding for Lung Cancer might spur you to be an advocate. The next time you have a worry related to your diagnosis, don’t dismiss it! Instead lean into it, feel it, and ask yourself the following questions – “Is my worry revealing an unmet need, and how do I get it met?” “Is my worry pointing me toward an empowering action?” All of this said, a Lung Cancer diagnosis can be so frightening, and personal circumstances so complicated, that sometimes worry is just too hard to manage. Options like therapy and medication can provide critical relief. After all, joy is a reasonable goal – and with the right support, it is within reach. Lisa Zarov, MSW, LCSW __________________________________________________ LUNGevity understands that a lung cancer diagnosis can be overwhelming. To answer your questions, the Lung Cancer HELPLine offers toll-free, personalized support for patients and caregivers at any time along your lung cancer journey. Our oncology social workers are available to help you manage your emotional, financial, and support challenges. Dial 844-360-5864, Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm (Eastern time). Call as often as you need—LUNGevity is here for you with tools to help you navigate your lung cancer diagnosis.

The nature of the World Wide Web is the essence of its creators. We’ve made a conduit of ideas and information that chronicles every facet of human behavior and lots of non-human behavior. One can find a searchable version of the bible and then click to something that would be an embarrassing find in the bible. The Internet is encyclopedia, newspaper, entertainment, and abstraction all available with only one precondition, access. I was diagnosed with late-stage lung cancer in 2004. The Internet existed but people-to-people interactions were limited to mostly email. Nevertheless, the Internet allowed access to all kinds of information about lung cancer—some of it scholarly and some of it junk. As I recall, there was nothing resembling today’s cancer message boards where people could communicate, consult, and commiserate with one another. Today, there are many and I’ll reveal how one helped me recover from depression and find hope. In March 2006, I was in active third line treatment, infused Taxol and Carboplatin hardened by the oral chemotherapy drug Tarceva. After three failed surgeries and twelve failed chemotherapy cycles. My lung cancer was persistent and I was depressed. Watching TV on a Sunday afternoon in the throes of side effects, I saw a CNN broadcast interview with Phillip Berman, M.D. Phil was a radiologist, never smoker, and lung cancer patient who ironically was diagnosed about the same time as me. He started a cancer blog to keep friends and family informed about his treatment. It morphed into RedToeNail.org. I joined, thus starting my therapy online. Why does it work for me? First is recognition that I’m not alone. Cancer treatment is a slog through appointments and side effects. It is beneficial to be reminded that others are trudging that same ground. Next, these people understand my disease, its treatments and mistreatments. Moreover, they have useful tips and tricks that work! I recall to this day the suggestion I eat a steamed bowl of plain rice each morning before taking Tarceva. It laughed at Imodium, but respected the rice. Last, it is a channel for me to express my thoughts, ideas and uncertainties with people who completely understand. To say they’ve been there and done that is a vast understatement. They designed the tee shirt the experts purchased! Today’s Internet has many opportunities to connect survivors and caregivers. There is the ubiquitous thumbs-up symbol, short sentence reply, and emoji of popular social media platforms. This is fast-paced therapy connecting hundreds, perhaps thousands quickly. It is useful, but I prefer message boards. I like to take the time to read, reflect, and recall my experience when someone reaches out for help. Both, however, are effective. It is interesting to explore why. I’ve attended hundreds of cancer support groups. They are beneficial, but I well recall my first several sessions. Certainly I was made welcome, but the fear I had of my disease was bested only by the fear I felt talking about it. I’m a relaxed public speaker but not a public cancer speaker. As I grew comfortable with a group, I realized another downside. Regulars stopped showing up. The very nature of lung cancer makes support groups a population in decline. Moreover, treatment side effects always seemed to coincide with the support group meeting. People in treatment didn’t feel well enough to attend. I’ve also been an individual support resource both in person and telephonically. First meetings are a bit awkward but these can be very effective for both survivors. There is a shared experience and in every case, this led to a meaningful relationship. There is that same downside of the support group; lung cancer claims a life and now it is a life I was personally and emotionally connected to. It takes a very special constitution to provide survivor-to-survivor support and mine doesn’t measure up. So I work the message boards, mostly at the LUNGevity Forum but some others. I am relatively new to the LUNGevity Forum and it is fascinating to read the history of the survivors, year after year. Some move on to other activities but return after a long absence to a rousing welcome. Why? For exactly the same reason online support resources are so effective. We celebrate life. Stop by and say hello. Stay the course.

This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient. I'm sure most of you can relate. COVID and Me By Lisa Haines When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so. Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020. Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now. As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this. Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time. That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year. Once the virus hit, I stopped doing all of these things. I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left. Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash. For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life. At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID. I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation. While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad. Currently, I have 5 airline tickets that are waiting for me to use. Every day I stay Stable I am hopeful that the time will come for me to be able to use them again. I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again. I look forward to the day that Covid is a bad and distant memory for all. It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways. About me: Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs. She is Mom to two amazing adult sons, one living locally in MA and one living in CA. She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer. Her grandchildren came into her life after her diagnosis and truly were a dream come true. At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life. They are now another huge inspiration in her cancer journey. She plans to be here for many years to watch them both grow up. Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son. She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB. Advocacy has become especially important to her and it’s something she wants to pursue long term.

I just finished reading a CBS news interview about the symptoms of COVID-19. (Google Search "NH Doctor Believes Pulse Oximeter Could Help Patients Get Ahead of Coronavirus"). In summary, the doctor states that people show up with shortness of breath symptoms with oxygen levels at "50% of normal but no sensation of difficulty breathing." "This disease kills by silent hypoxia and patients should understand that shortness of breath is a late sign." Apparently the disease has two phases: a "silent hypoxia" where oxygen levels are drifting down but you feel ok, and the second phase where your lungs get stiff, carbon dioxide starts to build up, and you begin to feel short of breath. I purchased my pulse oximeter years ago and check my O2 level daily, not because of coronavirus but because I have very limited lung function. In the spring, the pollen count starts to affect my ability to breathe and the pulse oximeter quantifies the result. Now it appears recording O2 levels is a good idea to get an early indication of COVID-19 infection. Pulse Oximeters are readily available at drug stores or online. I bet they've gone up in price since this news but nevertheless, they are worth the expense. If you are a lung cancer survivor in this coronavirus era, a pulse oximeter is as necessary as a home thermometer, my view. Stay the course. Tom

I'm 66 years old and lived a very reckless life that should have ended in death many times before now. That doesn't mean I am going to lay down without a fight. Still trying to put it all together and perhaps find others nearby working their way through it as well.

As I suspected....sleep still evades. Still reading older posts and following older journeys. But what strikes me (this is not very profound) is that it really is Anxiety and fear and lack of knowledge and Impatience (and shock) which dominate many posts, especially early posts. You can almost feel these feelings abating as more test results come, treatment options understood, plans made and action taken. It entirely mirrors my own experience. Less fear of death, resignation, depression and fatalism than I had expected. Bless all of you..past and present..who contributed (and continue to contribute) to this board. Peace Tom

Quick synopsis. In 2004 during an exam for suspected walking pneumonia the X ray found a small circular mass in lower right lobe. Had recently lost my brother to lung cancer and was a smoker so the Dr suggested a PET scan. As they say..it did not light up so watched it for two years with no change and I forgot about i t. Fast forward to last October and again I thought I had walking pneumonia. After two round of antibiotics I still had a wheeze and felt fatigued. I suggested to my NP to have a look at my right lung. Had a CT scan late December and got a call on the Friday after New Years that I had a 4.9 cm spherical mass. Caught me by surprise for sure. Luckily I got into a pulmonologist within the week and reviewed CT scan. She was very good and said it was a slow growing carcinoid tumor and maybe some localized lymph node involvement. She got me appointments for a PT/CT with Dotanate tracer, complete blood work up and pulmonary function test. She also told me that if results came back as she hoped then she would skip biopsy and go straight to the VAT surgery. Got the Pet Scan last Friday (always on a Friday eh) and she called me early Sunday morning to review the results. I believe she said there was a small indication of another spot in my middle lobe...but both the large mass and nodes lit up on PET. Sleeps been tough so I wish I would have kept notes. Tomorrow will tell the story I hope. I can tell that both her and the Surgeon are big fans of VAT...but both the size of the mass and the other spot make me wonder if an open surgery would be better? Rather do a little tougher surgery and get it right. 58 year old Male, non smoker for 4 years and in pretty decent shape. Wish me luck...and best of luck to everyone else. Doubt I'll get much sleep tonight. Tom

Hello, my name is Becky, my husband was diagnosed with lung cancer about a year ago. At that time stage 3, now stage 4, having metted to the bone (sacrum, T1 vertebra and left ribs) and it appears, to his brain as well. His choice was to go into hospice care, back when he was still in his right mind, and he is now home with me. I'm not sure I can do this. He's suffering from agitation, occasional hallucinations, and paranoid delusions. The other night he was convinced I was trying to kidnap him, and climbed out the window. The Ativan they gave me at the hospital only seems to make it worse, and the Haldol helps but only if I can get it into him. And he's stopped wanting to take it. I'm absolutely wondering if bringing him home was the right idea.

Hello friends, After reviewing my PET & CT scans taken in April & reviewing with multi-disciplinary cancer team, my thoracic surgeon has scheduled my lung surgery on Wednesday, May 22, at 11:50. Game plan so far. Step 1 - perform a "robotic-assisted wedge resection & lymph node biopsy" of the small nodule in my middle right lung that lit up on the PET at a rather high level (SUV 6.3). Because the needle biopsy in Apr failed, we have to get to this one to biopsy it on the spot. If it is cancer, he'll excise nodule & lymph. Step II - examine two considerably larger nodules in the upper right lobe that had much lower SUV on PET, but must be biopsied & results given on the spot, as well. Step III - if malignant, would try to excise the nodules and/or Step IV - if necessary, remove the upper lobe of my right lung. The only surgery I've had in my nearly 76-year-old life was a tonsillectomy at the age of 9! I am dreading this & am very scared. Not so much of the surgery itself, as the aftermath. Irka

Hello everyone - I am very glad to have found this forum. My husband was diagnosed on 4/1/19 with adenocarcinoma in his right lung. They caught it early and he is scheduled to have his right upper lobe removed on 4/23/19. We found an amazing cardio-thoracic surgeon who can use VATS. My husband is 61 and extremely active - he has never smoked. Needless to say, we are both a bit overwhelmed and scared. You go from normal life to being handed this diagnosis and it is a bit hard to wrap our heads around it. We are both as positive as we can be - but I know that he is afraid he will turn into this frail person who won't be able to walk across the room without resting. I would love to hear from people who are willing to share their experiences from VATS and what we can expect for recovery. I want to find a way to give him some hope. Also, I want to learn how I can be the most helpful to him as we go through this. I am 50 years old with a full time job...our boys are 23 and 24 and both out on their own with good jobs after they finished college. This is how empty nest is going for us! Sorry, but I use humor a lot We laugh, talk, cry, feel strong, get scared rinse and repeat. Both of our sons will come be with us for surgery and recovery. I look forward to reading your posts and getting to know you all better. Life is so much better when we reach out - as we are all connected. God Bless you all ❤️ ~ Stacey

I am a 59-year-old resident of the Metro DC area. I was diagnosed with stage 3 NSCLC ALK+ adenocarcinoma in February 2013, which after three years metastasized to my brain. I've had chemo and radiation for the lung cancer and surgery and two rounds of radiation for the brain cancer. Through it all, I have remained generally healthy, active, and in good spirits. I have a full-time job and try to stay active with several community organizations. I love to travel, sometimes just to see new places, and sometimes for ski and bike trips. I have supportive friends and family but have gone through much of my cancer ordeal on my own because most of those people don't live close by or they also work for a living. This has generally worked out fine for me. Ironically, the longer I deal with it all, however, the more I feel like I need more support than I did when I started out. I especially would like to be able to share with and support others who are going through the types of challenges I'm dealing with--something I've found is often difficult for people who haven't had cancer to understand. I'm looking forward to being part of this group.

I had a small lesion removed from my upper right lobe in May 2012. It was an adenocarcinoma, Stage 1a, so I considered myself super lucky. Surgical cure, no radiation or chemo. I have had CTs every year to look for any recurrence or other issues. All was well until my scan on 11/12 - my pulmonologist emailed me that there is a new 'focal area of concern' to watch. This spot has doubled in size in the past year. Coincidental to doubling my methotrexate dosage. I have RA and take methotrexate and a biologic, Simponi. 7 years ago when the first lesion was discovered the doctors advised to stop both of those meds which left me with prednisone only. I have an appointment with oncology on Monday, 12/31 to discuss this new development, my medications, and plans to evaluate this new focal area. I am pretending to be so optimistic around my friends and family, but inside I just know it is a recurrence. I need some realistic support and answers - which I hope I can get soon. Thanks for having this support system.

I am stage 4 nsclc adencarcinoma, only mutation MEK (non useful at this time) diagnosed 9-6-18 when I broke my right femur. LC was an incidental finding on pre sure X-ray, I was and still am non symptomatic. Started chemo in Oct., Keytruda, Alitma, carboplatin, have had 4 infusions. Pet scan done Friday 1/4/18, got results yesterday before chemo, doc said he had good news and nd bad news. Good news and bad news. The tumors and nodes in lungs somewhat shrunk but now there are new areas in the lungs/nodes that are small but lighting up. There are several areas in my right leg femur bone and in 2 vertebrae that lit up and are suspicious for cancer. That is the leg I broke and has the pin and rod. There are 2 ways to look at it, that these are areas that the cancer has spread to or they were there all the time and now that the keytruda is attacking. I’m not happy about it, was so hoping for shrinkage and would have been happy with no progression. The oncologist said this is a very atypical cancer. He is talking with the group in Denver, the “big dogs” in lung cancer. The plan is to do 2 more rounds of chemo (alitma, carbo and keytruda), today and in 3 weeks and do another pet scan. I guess they stick with the PET scan to compare the before treatment PETscans. I have to go get another brain mri to see if the cancer has gone there. Needless to say I am very worried that the cancer is now spreading and will grow in the next 6 weeks despite continuing chemo cocktail. Just wondering if anyone has any similar experiences? Thank you much, bless, Anne

Hi guys, My dad was diagnosed with NSCLC(Squamous cell) on October.In my state where we live (Kosovo), is really difficult to find a PET scan machine.So in this way, we didn't want to lose time.Doctors said that our best option is to do an MRI to check if there the cancer has spread to other parts.Thank God, the result showed that the cancer is only in left lung and the size of tumor is 33mm.The tumor is near big blood vessels and is difficult to do a pneumonectomy.In this case the doctor suggested my father to start a neoadjuvant chemotherapy with 3 cycle (Carboplatin + Paclitaxel) and after that we have to do a PET scan outside Kosovo to check if the tumor to check how many lymph nodes are affected and how much the tumor shrinked.Now he is in second week of third cycle of chemotherapy. During the chemotherapy, he gained 10 pounds.I know this might sound weired, but yes, he gained 10 ! During chemotherapy, he didn't feel any of chemotherapy effects, expect hair loss.Even his half lung is blocked, he never had problems with breath.He told me that he can breath better now.We have run a lot of times on mountain and the didn't have any problem. His blood test are just amazing ! He even has better test blood than me ! His heart result are also perfect.He Now I have a questions for you. What is the impact of this chemotherapy combination on mediastinal lymph nodes ? After all these good signs, is his body trying to "tell" us, that the chemotherapy is helping him ? Best regards from me !

My husband started immunotherapy treatment for metastatic cancer on October 15th, which spread from kidney cancer. It is renal cell carcinoma and he has several small tumors in each lung and one affecting a lymph node by his adrenal gland...which is near where his affected kidney was before it was removed. He didn't get to start treatment right away, because doctors wanted his kidney out first and he needed to heal before starting the immunotherapy. My husband had his first CT scan on December 13th, but it showed about 30% growth of all of the tumors. They told him it could be because the tumors grew that much or more between his diagnosis in late August until his treatment began, which was 6 1/2 weeks later. His oncologist said that many patients don't see their tumors shrink until four months after treatment starts. We would just like to know if anyone has been on immunotherapy (possibly both Yervoy & Opdivo) and had to wait four months to see their tumors start to shrink.

I am not a statistics wizard; an engineer, I value the predictive power of statistics. Indeed, if one can precisely control variables, a statistics-based prediction of the future is remarkably accurate. The joy of predicting end strength for a new carbon-nanotube concrete mix design melts the heart of this engineer. But, concrete is a thing with but 4 variables to control. Human beings have perhaps millions of variables, thus predictions about people are vastly more complicated and inaccurate. Statistically-based predictive power has a foreboding downside. The methodology is used by the medical profession to forecast life after diagnosis with late-stage lung cancer. Unfortunately, I have first-hand experience once predicted with but 6 months of remaining life nearly 13 years ago! My doom was forecasted with high statistical confidence and for a while, I believed it. In the dwell time between treatments, I searched for methods used to generate my projection of demise. Each patient’s type, stage, age, ethnicity, race, and date of diagnosis are reported to the National Cancer Institute on diagnosis. Deaths are also reported but not the cause of death. Nothing is captured on complicating health problems like cardio-pulmonary disease, diabetes, or other life-threatening maladies. The predictive data set appeared slim and uncontrolled. My doom and resulting gloom waned while mindlessly searching web pages for statistical good news. Ammunition in the form of a powerful essay by the noted Harvard biologist Stephen Jay Gould – “The Median Isn’t The Message” – contained: “…leads us to view statistical measures of central tendency [median or mean] wrongly, indeed opposite to the appropriate interpretation in our actual world of variation, shadings, and continua.” This meant the statistician seeks to combine data and express it as a median or mean to predict or explain. I’d forgotten that I was one inaccurate variable in a “world of variation.” One data point used to calculate a central tendency of survival for about 1.4 million Americans diagnosed in 2004. I might be the one holding the right-shifted curve from intersection with the axis of doom. Gould survived 20-years beyond his late-stage, nearly always fatal, abdominal mesothelioma cancer diagnosis. Ironically, he passed after contracting another form of unrelated cancer. A distinguished scientist, Gould eloquently described the limits of science and statistics by suggesting that “a sanguine personality” might be the best prescription for success against cancer. There is always hope, with high confidence. Listen to his essay here. Stay the course. ____________ Get your copy of Scanziety here https://www.amazon.com/Scanziety-Retrospection-Lung-Cancer-Survivor-ebook/dp/B01JMTX0LU

LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, announced today the recipients of its 2018 Career Development Awards (CDA) for lung cancer research. These coveted awards fund critical lung cancer research projects and offer the recipients world-class mentorship by LUNGevity’s prestigious Scientific Advisory Board. “We are excited to support these exceptionally talented new investigators. Interestingly, all three of these projects involve liquid biopsy-based approaches to detecting and optimizing treatment of lung cancer. These new projects may define new avenues for applying liquid biopsies in the clinical setting,” notes Charles Rudin, MD, PhD, Professor and Chief, Thoracic Oncology Service, at Memorial Sloan Kettering Cancer Center and chair of LUNGevity’s Scientific Advisory Board. “We believe that this outstanding group of awardees will help make progress in improving outcomes for lung cancer patients.” LUNGevity is proud to support the following 2018 Career Development Award researchers: Kellie Smith, PhD, Johns Hopkins School of Medicine, Immunometabolic T cell profiling as a prognostic liquid biopsy in non-small cell lung cancer. Dr. Smith’s research group will work to develop a liquid biopsy that predicts advanced-stage non-small cell lung cancer patient responses to combination immunotherapy regimens. Jeffrey Thompson, MD, University of Pennsylvania, Development of markers to predict response to immunotherapy in NSCLC. Dr. Thompson’s laboratory is working to develop blood-based tests to identify individuals most likely to respond to immunotherapy with minimum side effects, helping to ensure customized immunotherapies for advanced-stage non-small cell lung cancer patients. Edwin Yau, MD, PhD, Roswell Park Cancer Institute, Lung cancer detection by CRISPR-based detection of circulating tumor DNA. Dr. Yau’s team is developing a quick and cost-effective blood test for early detection of lung cancer that will complement CT screening. “By funding young investigators, LUNGevity keeps outstanding scientists, still early in their careers, in the lung cancer space. We work closely with these researchers with the hope of seeing them become the next generation of scientific superstars,” says Andrea Ferris, President and CEO of LUNGevity. “The CDA program encourages their continued development in the field of lung cancer research to grow a strong pipeline of dedicated lung cancer researchers.” Under the stewardship of LUNGevity’s Scientific Advisory Board, a group of 21 prominent scientists and researchers, LUNGevity ensures that grants are awarded to those researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as for extending and improving lives of lung cancer survivors. LUNGevity is the only lung cancer organization with a programmatic focus on early detection and a robust Career Development Award Program. Our researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The foundation’s overall research program, including CDA awards, is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. LUNGevity’s Scientific Research Program is supported by individual donors, the American Lung Association, Bristol-Myers Squibb, The Thomas G. Labrecque Foundation, Upstage Lung Cancer, and the Schmidt Legacy Foundation. Read the full press release.

Here is the weekly clip report: OncLive “Dr. Larner on Integrating Radiation Therapy With Immune Checkpoint Blockade in NSCLC” https://www.onclive.com/onclive-tv/dr-larner-on-integrating-radiation-therapy-with-immune-checkpoint-blockade-in-nsclc Diagnostic Imaging “Low Dose CT Lung Cancer Screening Program Findings Similar to National Trial” http://www.diagnosticimaging.com/di-executive/low-dose-ct-lung-cancer-screening-program-findings-similar-national-trial Targeted Oncology “Immunotherapy and Chemotherapy Combos Are the New Standard of Care for NSCLC, Says Konduri” https://www.targetedonc.com/news/immunotherapychemotherapy-combos-are-the-new-standard-of-care-for-nsclc-says-konduri OncLive “Dr. Jotte on the Optimal Frequency of Lung Cancer Screening” https://www.onclive.com/onclive-tv/dr-jotte-on-the-optimal-frequency-of-lung-cancer-screening Targeted Oncology “Immunotherapy Combinations Are Changing the Frontline Treatment of Patients With NSCLC” https://www.targetedonc.com/publications/targeted-therapy-news/2018/August-2018/immunotherapy-combinations-are-changing-the-frontline-treatment-of-patients-with-nsclc Cancer Therapy Advisor “Heterogeneity of Drug Resistance in EGFR-Mutant Non-Small Cell Lung Cancer” https://www.cancertherapyadvisor.com/lung-cancer/lung-cancer-nsclc-heterogeneity-drug-resistance-egfr/article/786470/ Speciality Pharmacy Times First Checkpoint Inhibitor for Previously Treated Patients with SCLC Approved by FDA https://www.specialtypharmacytimes.com/news/first-checkpoint-inhibitor-for-previously-treated-patients-with-sclc-approved-by-fda

Here is the weekly clip report: Cure “Lung Cancer Care Becoming More Personalized and Trials will Too” https://www.curetoday.com/articles/lung-cancer-care-becoming-more-personalized-and-trials-will-too Cancer Therapy Advisor “Lurbinectedin Receives FDA Orphan Drug Status for Recurrent Small-Cell Lung Cancer” https://www.cancertherapyadvisor.com/lung-cancer/lung-cancer-nsclc-lurbinecedin-fda-oprhan-drug-status-treatment/article/786009/ U.S. News – Health “What to Know about Lung Cancer Screening Guidelines” https://www.nga.org/governors/addresses/ Healio “Minimally Invasive Surgery Effective for Early-Stage Lung Cancer” https://www.healio.com/hematology-oncology/lung-cancer/news/in-the-journals/{924a7fc0-fcda-4ffb-bad7-4f2cb101c1db}/minimally-invasive-surgery-effective-for-early-stage-lung-cancer Onc Live “Dr. Witsuba on Biomarkers for Immunotherapy in Lung Cancer” https://www.onclive.com/onclive-tv/dr-wistuba-on-biomarkers-for-immunotherapy-in-lung-cancer Drug Target Review “Reducing NOVA1 Helps prevents Tumour Growth in Lung Cancer” https://www.drugtargetreview.com/news/34089/reducing-nova1-lung-cancer/ Science Daily “Finally, a Potential New Approach against KRAS-Driven Lung Cancer” https://www.sciencedaily.com/releases/2018/08/180809093458.htm Oncology Nurse Advisor “New PDL1 Inhibitors for Non-small Cell Lung Cancer: Focus on Pembrolizumab” https://www.oncologynurseadvisor.com/lung-cancer/pdl1-inhibitors-for-nsclc-focus-on-pembrolizumab/article/787627/

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.

My lung cancer diagnosis came as quite a shock to my family, my doctors, and me as I’ve always maintained a healthy lifestyle. I exercised regularly, ate healthily, never smoked, and enjoyed a variety of outdoor sports and other activities with my husband and our three children. I worked as a learning specialist for children ages K-8 and loved my job. Everyone I was close to commented that I was “the healthiest person they know.” But in March 2011, after worsening back pain, I visited my physiatrist who ordered an MRI. I figured I had a disc issue with my back or created an injury from too much sitting during work. When I saw my doctor for the results, she was speechless; she told me my upper body was "riddled with lesions." I said there must be some mistake, that the scan was someone else’s. As the doctor insisted there was no mix-up and this was truly me, I felt as if the floor had given way under me, a feeling that never seemed to fade from my day-to-day experience. I was 54 years old. A few days later, I was diagnosed with Stage 4 non-small cell lung cancer. Since I was an otherwise healthy, active, never-smoker, the doctors at Memorial Sloan Kettering Cancer Center predicted I would have the EGFR mutation, and the biopsy results proved they were right. The targeted therapy, Tarceva, shrunk my tumors, and with tolerable side effects, allowed me to continue leading a relatively normal life. I even took up sculling, a sport that I had always aspired to learn. However, I was disappointed when only after 9 months my cancer figured out a “way around” the Tarceva, which is expected for targeted therapies (referred to as acquired resistance). Thus, began my participation in a series of clinical trials and chemotherapy, all with mixed results and, at times, difficult side effects, which forced me to retire from my work which I truly loved and still miss a lot. One bright period during these trials was a 14-month durable response from a trial combining Tarceva and the immunotherapy drug called Nivolumab, also known as Opdivo. Unfortunately, after 14 months I had to be quickly removed from this trial due to adrenal failure and colitis. In addition, I have been taking blood thinners since the diagnosis because of a DVT that was found at that time, and a couple of years ago I had a brain tumor surgically removed. My latest battle is with Leptomeningeal Disease, against which I hope to beat the odds once again. Throughout my treatment, I’ve taken advantage of different integrative health services to help manage symptoms and side effects, such as acupuncture, counseling, support groups, and meditation. I can’t say these endeavors were always helpful, but it was important for me to try to find alternate ways to manage symptoms, both physical and emotional. However, over time my stamina began to wane, and my sense of self efficacy began to diminish. It became increasingly frustrating not to be able to do the things I always enjoyed. The treatments and their side effects can wear you down. Initially, I struggled to find camaraderie with other survivors who have the same mutation as mine. Social media has been particularly helpful, especially in the beginning when I was trying to learn about different treatments and find a community. LUNGevity, Cancer Grace, and Inspire, and Lung Care Alliance were all useful sources of information and support. My husband has been a great support and care giver. Initially, he dug into the research to learn what treatments were in development, so we knew what was in the pipeline. Moreover, my children have also been there for me. Even though they’ve grown up and don’t live at home anymore, they still come to visit me as often as they can. It has been difficult for me to accept not being able to participate in their activities and lives the way I was able to when I was healthy. It has been a continuing effort for me to feel “a part of the game.” If I could share my experience with someone newly diagnosed, I would recommend getting as much information as you can from credible sources and not being afraid to get second opinions. It’s best to be treated at a major cancer center even if it means traveling because the research experience, depth of knowledge, and specialists they provide are cutting-edge. I would also recommend participating in clinical trials if they’re an option, as well as trying to find people to connect with who are going through similar situations. Since my diagnosis, life has been a roller-coaster ride of living with uncertainty and trying to function amidst toxic side effects. I try to appreciate the good days and keep active. This spring will be my seventh-year anniversary living with Stage IV lung cancer. I am grateful for those who are raising awareness of lung cancer as a growing epidemic in non-smoking women and am excited to share my story to help other patients. I am especially interested in helping to erase the stigma that lung cancer is only a smoker’s disease, and hopefully increase research funding to the level it should be.

LUNGevity Foundation, the nation’s leading lung cancer-focused nonprofit organization, is pleased to announce the launch of a new lung cancer awareness campaign – 234. The 234 social media campaign utilizes graphic animation to engage the public in understanding the true facts about lung cancer. Approximately 234,000 Americans are diagnosed with lung cancer every year, 422 people die of lung cancer every day, and lung cancer kills more people than the next 3 deadliest cancers combined. The campaign encourages the public to get engaged to make a difference (be the 1). “Our goal with the 234 campaign is to educate the general public about the significant incidence and impact of lung cancer,” said Andrea Ferris, President of LUNGevity Foundation. “We are looking to motivate people to take action and engage others in our effort to drive change.” One in 16 Americans will have a lung cancer diagnosis in their lifetime. Nearly 65% of new diagnoses are in nonsmokers, most often found late when the disease is stage 3 or 4 and more difficult to treat. Just a few years ago, late-stage patients had few treatment options. Today, due to accelerated advancements in research, this is changing, and many late-stage patients are living longer and better lives. We need to continue to accelerate investments in research to save lives. The campaign will run through July as part of LUNGevity’s ongoing efforts to engage new audiences to improve public health. The video may be viewed on the homepage of our website at www.LUNGevity.org. Read the full press release here.