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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.

LexieCat joined us on June 29, 2017 after taking advantage of low-dose CT screening for folks at risk for lung cancer. That test revealed a small highly suspicious single nodule that was surgically removed. She had a successful lobectomy; we all hoped she was one and done. Lexie, a screen name for Teri Garvey, was a district attorney in Camden, NJ. In my younger years, Camden, across the Delaware River from Philly, where I lived, was an industrious town bustling with shipbuilding, soup making (the Campbells Soup Company), distilling, and iron working. The deindustrialization of America hit Camden hard and when the jobs left, crime moved in. Camden, now a hard-edged town, made enforcing the law a dangerous occupation. But Teri was a tough lady, fearless, courageous, and dedicated to justice. We met in person during the 2018 LUNGevity Summit. She a lawyer, master of words and ideals, and I the engineer, entrenched in physics and things, discovered a fond friendship. Summits are our “shining city upon a hill”. Surviving lung cancer is a mighty forcing function. Our bond of survival transcends differences. Teri became a bastion of support for our forum. A witty quip-master, her parody of new drug names was quintessential Garvey—“…it makes me think of Buzz Lightyear: “To Imfinzi and beyond.” On starting combination chemo with immunotherapy, she offered: “My motto, walk softly and carry a big drug.” After a clean scan report a member, knowing of her broken collar bone, suggested she not do a happy dance. Teri responded: “Sadly, you know me all too well. [My] Childhood nickname—‘Princess Grace.’” Nearly 3 years after surgery, a scan showed tumors in her lung and sacrum. Her second-line treatment in September 2020 was combination chemo (carboplatin, Altima and Keytruda). Scans in April 2021 showed progression. She decided to join the arduous and risky Ivoance Tumor Infiltrating Lymphocytes (TIL) trial which ended early for her after 5 of 6 scheduled infusions. A good news scan was joyfully celebrated in July but by October, cancer cells were found while draining a pericardial effusion. Her defenses down from the TIL trial, Teri struggled to return to good health. She experienced a series of exhausting hospitalizations from October though the New Year that sapped her energy but not her fortitude. Cancer was beating her body not her spirit. In a private message, she sent me this photo with the quip: “I finally love my hair!” Teri chose hospice care on February 19, 2022. She passed surrounded by loved ones on February 25th. Teri was one of those very special people I’ve met on my life’s journey. Like so many, her diagnosis was a surprise. Her attitude after diagnosis is one to emulate. Teri told me lung cancer would not change her. She lived every minute of every day caring for people, seeking justice for victims, and helping the unfortunate. She told me she chose the risky TIL trial because it might help someone down the road. It might indeed. Stay the course.

Okay, your surgery is scheduled. This post is meant to provide you with information and tips to prepare for thoracic surgery, what to do in the hospital, and when you return home. I’m hoping that the information here will alleviate some of your anxiety and fears. You can do this; you will get through it! Be open to the support of family and friends as well as the folks here at Lungevity. We are here for you. Pre-Surgery o Eat healthily, get sleep, and also do some physical activity. It might just be walking, but the better your body works before surgery, the more quickly it can recover post-surgery. o Make sure you have someone to count on for your first few days at home. You'll be tired and likely in some discomfort, so having someone there to assist you when you need it can be a real help. If you live alone and have Medicare, you can ask your doctor for a home nurse to visit, check on your progress, and change dressings. In-home care also lets you ask questions about your recovery. o Get a wedge pillow. It will allow you to sleep in a more comfortable position, take the pressure off your back, and improve your ability to breathe comfortably. You may also want to keep a small pillow available to press against your body's surgery side when you cough. o Arrange the nightstand with things you may need, so you have them within easy reach. Remember stretching is something to avoid after surgery. o Make sure to fill your pain prescriptions and take them as recommended. Once you’re home, you'll need to be active, and it is harder to do to if you’re in pain. The meds are not a "forever thing," but are necessary to keep you comfortable enough to recover faster. o Have the numbers of your doctors readily available to call if you have questions or experience symptoms that concern you. o Pack your “hospital bag” bringing only the things you’ll need. Remember, a thoracic procedure requires a post-surgical stay of a few days before being discharged. In the Hospital o Show up on time. o On the day of surgery, after the surgery takes place, they will likely have you sit up, stand, or even have you walk to a chair to sit for a bit. It is important to get you moving and exercise your lungs. Remember the surgeon likely gave you a pain block, so it’s unlikely you’ll feel pain. o You should be given a Spirometer (if not, ask for one). Use it often; it will help to keep your lungs clear and rebuild lung capacity. o TAKE YOUR PAIN MEDS AS INSTRUCTED. The pain block will wear off within 12-20 hours after surgery, and without the additional pain meds, you will get uncomfortable quickly, so please take the pain meds as prescribed. o The day after surgery, you, your IV’s and chest tube/pump will go for a walk around the ward. Do not be an overachiever; do what is required and practice slow deep breathing when exercising. o If you miss bathing, the nurse can provide towelettes as a substitute. o Once you are stable, if your lung is not leaking air, and your body is properly absorbing post-surgery fluids, you’ll be set up for discharge. They’ll remove the chest tube, IV’s, and other paraphernalia they’ve attached, and you’ll be ready to go home. Home Post-Surgery o Have a plan to exercise. It should be walking; at first around your house and later outside (sunshine and fresh air are excellent tonics). But take it easy--this is not a sprint but a long race that you will win with each increasing step over time. o Continue to use your spirometer; it is your best friend for increasing lung strength and function. o You will be sent you home with pain meds. Take them as prescribed until pain is diminished. Pain restricts exercise and prolongs healing. o REST WHEN YOU FEEL TIRED. Sorry for the caps, but this is important. You've had major surgery and need time to heal, adjust to changes, and adapt to old activities. Be kind to yourself and give yourself grace until you’re strong enough to manage your new normal. o If you have any symptoms that concern you contact your doctor asap. For example, some people may hear/feel gurgling when breathing while it may be nothing it might be a condition (subcutaneous emphysema) that your doctor should be aware of. It can often resolve on its own, but keeping the doctor updated is a wise choice. o When you're feeling up to it, update us on our forum. Let us know how you're doing and ask any questions. We're here for you! Recovery differs for everyone; in my case it was about 6 weeks before I was almost back to routine activities after my Lobectomy. Please stop into the forum if you have questions. A good group of people will be there for you.

Baseball is a game that requires patient players and fans. Like lung cancer treatment, there is a lot of waiting for something to happen. Also like lung cancer, the game is unpredictable. A single pitch can change the outcome of a game like a single cell can change the outcome of treatment. And like lung cancer, baseball has many uncertainties and these are defined by odds. The best hitters succeed a little better than one in three times; the best teams winning about six in ten games. Baseball players need to persevere against low odds of success to achieve victory. So do lung cancer patients. A lung cancer diagnosis is devastating. Recurrence after treatment is common and traumatizing. We ought to prepare for the distress of recurrence. Treatment, even for those diagnosed at early stage, is not likely to be a walk-off home run. I was not prepared for treatment failure. How common is recurrence? A National Cancer Institute study suggests about 33 percent of stage IA and IB patients experience a reoccurrence. Up to 66 percent of stage IIA, IIB, or IIIA experience a reoccurrence. Interestingly, these percentages are virtually identical for both adenocarcinoma and squamous cell lung cancers. What about stage IIIB or IV disease? The study reports recurrence about half that of lower stages but suggests this is due to competing risk of mortality. Including surgery, my treatment success average was a dismal 1 for 5. That translates to a baseball batting average of .200, yielding a quick trip to the minor leagues. I had four recurrences after no evidence of disease (NED) treatments. We didn’t know perseverance was a requirement and we were not prepared. How should we prepare? Here is what I didn’t do. Have a frank conversation with my oncologist seeking information on recurrence likelihood. Share this information with my family to ensure they were prepared for bad news. Finally, celebrate my NED state by fully engaging in life. NED is that extra life treatment buys and we did not take maximum advantage of it. A sidebar benefit of surviving is accumulating lessons learned. I now completely understand that lung cancer is a persistent malady that is difficult to eradicate with unpredictable treatment outcomes. Like the best baseball players, we need to take our turn at each new treatment with a fresh perspective, forgetting our last experience and striving only to put the ball in play and arrest our disease. Stay the course.

Using the words free and invaluable to characterize lung cancer medical care is a hard sell. I’ve seen so many scams promising this, that, and the other thing that deliver nothing more than a money pit. So I was indeed skeptical when Dr. David S. Schrump introduced his National Cancer Institute Intramural cancer treatment program, at our April 2018 LUNGevity Summit, with the words “no cost to patients, including travel and lodging.” Why didn’t I know about this resource? I’ve encountered so many newly diagnosed folks who had no or inadequate insurance and who had to forgo treatment because of financial concerns. Yet, there is a sophisticated, taxpayer funded, medical system that designs “unique to patient” protocols including surgery, radiation, chemotherapy, and newly emerging treatments. And, it is free! All patients at the NIH are on investigational protocols, including those who are receiving standard care, so that their tumor tissues, blood, etc can be used to develop new cancer therapies. Once a patient is enrolled onto a protocol, care is provided at no cost. There is no third party billing, deductables, etc. Then on the second summit day, I learned Dr. Schrump’s Surgical Oncology Team is developing unique vaccine-like immunotherapies using tumor material surgically removed from a patient — a tailored and individualized immunotherapy agent. In an ongoing vaccine study, Dr. Schrump’s team observed immune responses to lung cancer-associated proteins in 60% of patients; several responders have had unusually prolonged disease free-survivals, supporting further evaluation of the vaccine. Dr. Schrump hopes that personalized vaccines may one day be an alternative to adjuvant or post-surgical chemotherapy, the current standard of care. Much more work needs to be done to determine to feasibility and potential efficacy of this approach. Moreover, they are using aerosol delivery methods as alternatives to IV or oral administered drugs to increase the uptake of drugs into lung cancer cells, and “prime” them for attack by the immune system. Indeed, his presentation was filled with very innovative methods of attacking lung cancer with promising results. If you are an American and don’t have the financial resources for lung cancer treatment or if your medical team has run out of treatment ideas, contact the National Cancer Institute. You don’t need a physician referral. Email jan.pappas@nih.gov, introduce yourself and your diagnosis stage and type and put your phone number in the email. Free and invaluable may indeed be words appropriate to use in concert with lung cancer treatment.

"1. Stable posttreatment changes in right lower lung. 2. No adenopathy or recurrent disease.
" I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? Brain check-up next month. Hope you're all having some nice moments in your days. Karen

These definitions were provided by a general medical oncologist who treats most forms of cancer. He cautions that although the terms have distinct meanings, there is overlap. Cure. Should be reserved for specific diseases where recurrences happen quickly and one can safely say there is a cure. Not useful for diseases like most cancers where recurrences can occur up to 5-10-20 years later. Mostly applies to non-melanoma skin cancers. Commonly used by surgeons who don't follow the patient long-term and want the patient to feel good about the surgery. But this pronouncement can be VERY misleading as I have had patients without followup because the surgeon said: "I was cured,” and then suffered a recurrence. I use it with qualifiers, such as "about 95-percent chance of a cure" if someone is still free of disease at 5 or 10 years in concert with statistical predictions. 5-year survivor. This term is mostly used to describe patients if still free of disease at that time, and often implies a reasonable chance of a cure. Most commonly used term now and has supplanted the use of term "cure". No evidence of disease (NED). Describes how things are at a specific time, such as after scan, surgery, re-staging workup, after chemo, or XRT [radiation therapy]. This is a point-specific-term, and is good, but does not guarantee anything long-term. Remission. Similar to NED, but usually used after someone has had disease treated by XRT or chemotherapy and not just surgery but is a general term. It IMPLIES a complete remission but not always. The disease has disappeared at least for awhile, to exam or testing. Several sub classes of remission: Partial remission (PR) meaning at least 50% reduction in the bulk or evidence of the cancer, usually measured by size in mm or cm. Minor remission or minor regression suggesting the same but at least 25% reduction in size/bulk of the cancer and a less useful term. Complete remission (CR) meaning all evidence of cancer gone after some treatment. Once again, usually after XRT or chemotherapy, but not surgery (surgeons usually just say, "I got it all”). Complete pathologic remission (CPR) (also called complete pathologic response) usually implies that the patient received chemo or XRT PRIOR to surgery (neoadjuvant therapy) to reduce the size of the cancer prior to surgery, and in the final surgical specimen NO cancer was found pathologically. Often used for breast cancer patients. Partial pathologic remission like CPR but with a poorer outcome. Implies the cancer is sensitive to the treatment but not 100-percent, and often implies need for more therapy after the surgery. Stable. Implies the disease has not grown nor appreciably shrunk (due to variance in measurements, this often suggests a single change +/- 10%), and then the trend in change is the most important determinant. Used to be considered a reason to change therapy, but in some diseases may imply continued survival benefit, and thus no need to change therapy. Progression. This is the worst outcome suggesting significant growth or continued trend in growth and implies need to change therapy. If no therapy, then "Best Supportive Care" (BSC) like Hospice or comfort measures. There are three other terms used for surgery results: R0, R1, and R2. These describe visual and pathologic review of the resected cancer specimen. R0 implies all cancer removed. No obvious visually or microscopically identified cancer seen. This is the best result after surgery. R1 implies no visual cancer seen, but microscopically tumor can be seen at the margin of resection and suggests some tumor left behind. Likely needs additional resection, or if not feasible, XRT or chemotherapy afterwards to treat the area. R2 implies visual tumor left (macroscopic) and means the same as R1 but a less successful outcome ("I had to leave some tumor behind, it was attached to an artery or major vein, etc").

Hello to The Durva Club- I wanted to pass this information along to you- On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event. I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks. “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience. He wasn’t a positive see the bright side of life type of Doctor. Shame on him!! Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s). It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome. Too much of “good thing” is bad for you. those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva. In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. You guys inspire me! Michelle

I'm the guy who paints a toenail for every year I live beyond my February 4, 2004 diagnosis day. This year our toes are LUNGevity Blue to honor the foundation that is dedicated to changing outcomes for people with lung cancer through research, education and support. There are many people who've been instrumental in my survival and making a life after; none are more important than my loving wife -- Martha Galli. If I can live, so can you! Stay the course. Tom Galli

I had my end of chemo scans done yesterday and was getting the results next Wednesday but went to my gp to get some scripts and he had a copy of my results so IM CANCER FREE ....i was so happy i was crying walking around the supermarket trying to text my kids through watery eyes ... Sent from my SM-N920I using Tapatalk

Hello everyone I finally created an account lol. I'm a 2 1/2 year lung cancer survivor and THERE IS HOPE!!! I've been a part of LUNGevity since my lung cancer journey began and it's a great organization. I was diagnosed November 20, 2014 with stage 3B NSCLC adenocarcinoma ALK +, I stood positive, held on to the word of God and fought a brave fight and won!! It wasn't easy but it is POSSIBLE through the word of God! I was on Dr. Phil and shared my story, I've traveled and shared my story, I'm a lung cancer advocate and now I'm an owner of my very own crossfit gym. So remember my lung cancer brothers and sisters there is HOPE!! DON'T EVER GIVE UP!! No matter what they tell you!! Sent from my SAMSUNG-SM-G935A using Tapatalk

Hi All You Bad *ss Cancer Warriors, I am sharing some great news for stage IV and all others struggling with this awful journey. After 4 years of chemotherapy, immunotherapy, radiation and finally a lobectomy I am now done with my cancer treatment. I’ve had 2 years of clean scans and had my last immunotherapy treatment last week. Today my oncologist set me free sort of. I’m one of his few lucky stage IV lung cancer patients who is NED after 4 years of treatment. I will be scanned “ad nausea” (his words) going between PET & CT scans. I’m VERY nervous being off treatment but hey, I’m alive, NED and going to Las Vegas to celebrate. NEVER GIVE UP! If it can happen to me it can happen to you. Wishing everyone great scans and happy holidays. Claudia

Hi everyone Hope everyone is doing well, just wanted to let you all know I haven't had any further problems with seizure activity since going back on the dexamethasone even though it's the reduced amount so thats good news,I have a body CT SCAN on Monday and an appointment on 27th October for results of the test but they told me there is a problem with radiologists at the moment so expect a couple weeks delay so unfortunately going to be a long wait lol, All the best Justin

Hi Karyn, I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing. The prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person. I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. I'm glad you found us, Karyn.

Hi everyone, I got the results from last weeks CT scan and it's all good news thankfully, there is no spreading to anywhere else and the tumor has shrunk a bit more so classed as stable,there is scaring on the lung from the radiation but they are really pleased with everything so just the mri scan next month to see if all is good in my brain and hopefully get on with my life, All the best Justin

Hi Justin, Here are some suggestions: 1. Stop reading those damned internet statistics (this is not the first time you've heard this suggestion, right?).You know they're out of date. 2. Instead, listen to this: The Median isn't the Message, by Stephen J Gould. He was a scientist and a cancer survivor who understood what statistics can and can't tell us. 3. Get a grip and start enjoying your family! Lou is right on this! Stop wasting your one rare and precious life in fear. You'll be doing your family as well as yourself a big favor. 4. If you haven't already, consider cancer counseling and/or see if antidepressants are appropriate for you- I've found both of these helpful.5. 5. Know that we're here for you and vent and rant all you need to! Most, if not on his forum all, have been in the throes of hopelessness at times. Some have passed on. Those of us that are still posting are stlll here! This is proof that HOPE makes sense. My lung cancer was an early stage. However, lung cancer is my third primary cancer. My second was a rare and aggressive stage 3 gynecologic cancer with a "dismal" (my doc's word) prognosis. I continued with aggressive treatment and I've been NED for over 10 years. There were no guarantees for me, but I'm still kicking. Hang in there, Justin. You can do this!

I was diagnosed in Feb 2019. Had a brain MET and some nodes in the lining of my right lung. It happened very fast. One day I'm shoveling snow and feeling good, next day I'm wondering what the heck happened and my life changed. I experienced shortness of breath, so they did scans and a thoracentesis (draining fluid from my chest), a biopsy, then they gave me the news. SCLC. They immediately put me on chemo with carboplatin, etoposide and tecentriq, which was recently approved for first line treatment. They found that I was allergic to etoposide, so they substituted paxlitaxel, and I still have weekly infusions of it to this day. One of my doctors suggested whole brain radiation in May, but we refused. Then the brain MET disappeared, which I think was due to tecentriq, but no one knows for sure. Only God knows. It's gone. For now. Paxlitaxel side effects are not pleasant, but I can still play some golf. I'm now a frequent flier at the cancer center and still not an expert on this disease. There are so many things going on now in research that I could never keep fully up to date. I rely on my medical team to be the experts, to be up to date on SCLC and to do their thing exceptionally well. I ask tons of questions and still make the final medical decisions. But I think the most important aspect of this disease is attitude! Positive or negative, that's the only thing I can control. I see some patients who are so depressed they make me feel depressed. That's not a good way to go through this thing. I've experienced this depression and can say that it's really ugly. I've even heard that negative attitude can affect not just the patient but also the disease. So I'm in charge of my attitude and rely on the help of family and friends to keep me positive. Avoid negative crap always. So that's the extent of my SCLC experience. I suggest that patients and supporters stay focused on positive attitude. Do whatever is necessary to keep your wife's attitude positive. That's a very, very tough task, maybe even tougher than the treatment of this disease.

Today marks 4 years of survival! By most standards, my path hasn't been as difficult as others. There have definitely been highs - when my hair grew back, my lashes grew in longer - and lows - two recurrences and a secondary cancer diagnosis. But as I say often - I'M STILL HERE! I tell my story to anyone who will listen. People need to know that lung cancer doesn't have to be an automatic death sentence. Does it suck? Yes. Will it change your life? Definitely. But you move forward, one step at a time. Forward is forward ,no matter the speed. I am looking forward to the Breathe Deep Denton event in April. I enjoy visiting with the other survivors and bringing attention to this cause. I've also been asked to speak at a function in March so I'll be sharing my story again. The more the public understands lung cancer and all of its causes, the better our funding will be for research. Most importantly, though, is this: I stumbled across this site one night when I was looking for answers. I have met wonderful friends - in person and online - here. Those friends have made this journey easier. Thank you, all.

Barb ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track. Sillycat .. you may find this interesting https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/ I got #14 today, blood work all good ,most fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights CT says I'm still NED!! enjoy the season

Tom Is that valid at Wallmart for discount. lol I would like to take this opportunity to thank Imfinzi for supplying me the drug and clinic at no charge. I never thought this thread would become so popular this last year thanks to the people on this forum who contributed and all those that viewed over this time. Special thanks to Kleo who was a great support in the beginning of this journey and alas had to stop the drug.I believe it was because she did not receive the Durvalumab goody bag.😎 Thank you Kleo and all the best on your new path. Going forward thanks to everyone and it is my hope we all can benefit from this drug in the coming months and years. Going to take a break now and will update on my future scans ,The word is it could take up to eight weeks for the side effects of the drug to wear off. Bob

All my Durva friends are doing so good! Yay! I may not be taking the durva anymore but I still get to hang out here cause I had some....right? 😁 So I'm only at half way thru this chemo/immuno thing they are doing. Had to stop and do some tests on my digestive stuff because it's actin up. If it aint one thing, it's another. My onc is a lovely Indian lady....love her. But holy COW does she talk fast. And that accent....I usually just kinda nod at her. LOL This last time she was doing the exam and she kept saying...your balls are full. Said it 2 or 3 times...your balls are really full. I piped up...I don't have BALLS silly. She said no no...your balls...they are full. I just kinda stared at her funny...said ok...and went on my way. Got home and thought...do you think she was saying BOWELS? 🤣🤣

Hello- welcome to your new family. I’m one of those Stage IV healthy people. It’s more common than any of us could have ever imagined. You might want to check out Diana Lindsay’s “Something more than Hope”. She shares her survival story as an EGFR mutant which is so inspiring. Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message. It’s so on point! The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment Another terrific resource is Anti-Cancer Living. Lots of great information in there too. In addition, Facebook has some great support for EGFR & the Exon 20. Knowledge is power & hope is the driver on this road. There’s so much hope on the horizon with all these clinical trials. Stay strong. We’re here for you! Michelle

On 12/20/2017, when the pulmonologist came into the room and said "It's bad. It's cancer" then proceeded to give me the diagnosis of Stage 3, I naiively asked her about the survival rate. She said "15% survival rate in 5 years" and I believed it. What she told me sounded like "you will die at any moment!" - I went home and wasn't sure if I should write the will first or start cleaning out my house. Shortly afterwards, I found this forum and started reading the threads and your comments on these "statistics" resonated with me the most along with "if I can survive it, so can you" comment. Thank you, Tom, for being my and all others' wind beneath our wings (pardon the cheesy-ness). MB

Red, in white shirt and loose thin-black tie and sweating in Maine’s summer heat, is leaning on a rock-wall fence. He’s just opened Andy’s letter found under the black obsidian rock. In the background we hear Andy reading his evocative description of hope: “Remember Red, hope is a good thing, maybe the best of things and no good thing ever dies.” The movie Shawshank Redemption is a powerful story about hope and life with a message that should resonate with every lung cancer survivor. I watched the movie the other day and made the connection. Andy was imprisoned for two life sentences with no possibility of parole. He was wrongly convicted of murder and throughout the story of his day-to-day life in prison, everyone tells him “hope is a dangerous thing.” On escaping, Andy proclaims that hope is “maybe the best of things.” The movie story line is exactly parallel to the plight of the late-stage diagnosed lung cancer patient ⎯- an unforgiving disease with hope as the most effective means of avoiding consequences. For lung cancer, hope is not a medical remedy. While new lung cancer treatments are emerging more frequently now, basic research funding to diagnose and treat lung cancer lags other cancers. Perhaps the pace may pick up, one hopes. Perhaps a treatment may emerge just in time to save a life, one hopes. Perhaps a miracle remission occurs, one hopes. Hope may not be a medical remedy but, for many of us, it is our only effective medicament. And, in my case, hope is “maybe the best of things.” Recall the story line of Shawshank. Andy’s future is confinement in a mind numbing institution, but he makes a choice to live in a different reality and works diligently, every day, on a novel escape plan. He makes a conscious decision to live. He embraces the hope of escape against all odds. Andy’s poignant characterization about life reveals his reasoning: “I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Exactly! Sometimes in the heat of lung cancer treatment, we forget its purpose ⎯- extended life. No one knows how long but life for most is extended. So what do we do with the extension? Re-read Andy’s characterization. We long for a period of life extending into satisfying old age. But most without lung cancer do not dwell on the amount remaining on account. Lung cancer patients take careful measure of the balance. But, measure for what end? I believe, if one chooses treatment, then one chooses life. Rather than dwell on the remaining balance, focus on doing something you enjoy everyday. I suggest a survivor forget the past, declare the future irrelevant, and live in the day. “Get busy living or get busy dying.” Stay the course.

This will be long so sit back relax and say I CAN DO THIS: 1. Had a long talk with the lord of course one sided, he choose not to speak. I explained that this cancer thing was alot bigger than I could handle and ask him to handle it. Said Lord, I know if I die that I will wake up and be in heaven and attend a real big family reuinon and I thought that was great. If I wake up here thats OK too. I have my wife, family, friends, my horses, dogs, cats, and maybe I can help someone else so you handle this. My promise to him was I would always talk to someone everyday about the lord, someone everyday about their cancer (not mine), and I would encourage people to quit smoking like me(3 weeks before I was told I had cancer). Well a friend gave me a coin with a cross on one side and the prayer from Mark on the other that said: With God ALL THINGS ARE POSSIBLE. Well I carried this coin in my pocket at all times and when I was scared, nervous, or unsure I would rub that coin between my fingers until I remembered that my faith was stronger than the cancer.Today I buy those coins by the box and pass one out everytime I go somewhere. Especially when I go and visit at oncology ward. 2. I had to realize that I wasnt punished just bad luck. I went to the hospital for radiation and chemo and I would sit in the lobby at Brook Army Medical Center and watch people come in without legs, arms, young kids from Iraq with their faces nose, ears burnt off. And I mean off. They are 19 and 20 and will walk the rest of their life with these marks. Hm can you see my cancer. Nope. So I would make it a habit to sit and talk with them over lunch and let them know that its whats inside that counts and again, the lord will take care of them. 3. Well after my pity thing was over I began to start a new life, a life with cancer living inside of me. Now you have a choice here: Let the cancer control your life or you control the cancers life. By now you know what I did.. 4. Now here is the plain facts and its so simple. I raise horses and cattle and I remembered a old saying of mine. Have you ever seen a fat cow die. NOPE. The skinny ones do all the time. So here I am with a fried throat from radiation and cant eat and the doc's want to put a tube in my belly. Hm, again not a chance that this is going to happen so for 4 1/2 months while I couldnt eat solid food I drank 4-5 ice cream shakes a day, bowls and bowls of ice cream, Nestle's milks of banana's, vanilla, 3-4 cans of boost and I went from 165 to 210 during that 4 months. Also and here is a biggie hint, I ate a half watermelon everyday. Has that old vitamin (Lycopene) that doc's are now figuring out that helps fight cancer. Gave me the water I needed also and is a natural stool softner for me and I love ice cream and watermelon so seemed like a wise idea to me. LOL. Boost has many many vitamins in it so that really helps. Now while I am talking about vitamins I asked my onc, if I take vitamins during chemo can you for sure tell me that the vitamins will not help to heal cancer cells like it does good cells. He said and I quote, no, I cant tell you for sure that it will not help cancer cells to come back. Well, Boost is made to help your system with vitamins so that is all I used. After chemo stopped yes then I went on to a multi-vitamin called Miracle 2000 wich just seem to have a good balance but also had high seleium which is good to fight cancer cells. Got it at GNC. During chemo you do not want to eat thin skin fruit. Like apples, grapes, and such. The dirt and pesticides can lay under the skin so if you have to eat them make sure they are cooked. Eat lots of bananas, cantalope, watermelon and thick skinned fruit. All meat should be well done and please eat more fish than red meat. When your counts are down from chemo you can get any infection there is and then some. After I could eat I had plenty of cottage cheese with green olives. Lots of salads, veggies, carrots, and made up for 53 years of not eating veggies LOL my mom loved it. 5. Drink one gallon of water everyt day. Each time you drink a glass think to yourself I am washing my cancer away. I am washing my cancer away. Positive mind picks up where the oncs leave off. I told myself that Cancer was a temporary inconvience and I believed it. 6. Lots and lots of green tea. Hot with orange blossom honey in it. Very tasty. Would drop a peppermint or spearmint candy in it now and then. At night I couldnt sleep like most of you so I would have a big cup of sleepy time tea then take my sleeping pill. Well after awhile you condition your body to go hmmmm sleepy time tea , lights out. Got off the sleeping pills that way. Condition your mind and body to work for you not the cancer. They also have a Lipton Green Tea out now. Its a cold drink that has citrus in it and is very tasty. Remember Green Tea, GOOD. 7. Your body heals best when you sleep so sleep away. I would get up in the morning so I could go lay on sofa and take a nap. Buy a big screen TV and rent lots and lots of movies. Take care of yourself, make yourself the number one priority in your life for a change. When you get better you can pick up where you left off or maybe change your life altogether. 8. A pet is always a good caregiver. Will lay with you and give you something in your heart that will comfort you 24/7. 9. Walking. When you can force yourself to walk and help them muscles. My wife and I would walk miles and miles when I could get up. Better to throw up outside than in the house anyway. By the way, after all this I am not on oxygen either and I believe its cause I walked alot even when it hurt. Well in closing this is not a commercial, ad or a must do. This is what I did cause I wanted too. I might die from a truck, a horse bucking me off, maybe a heart attack but I WILL NOT DIE FROM CANCER. Take care and God Bless, Don Feel free to ask me a question but ask it here where everyone can read it.

Update: I have received nine tri-weekly infusions (paxel / Carbo), and my scan results have revealed no evidence of disease! I am now on a monthly physical exam. My Oncologist says that I could remain clear for months or years. My prayers are for all of us to beat this horrific disease.

My CT was on August 30th but I needed to wait till today to get the results—from a new medical oncologist. He’s my kind of guy achieving undergraduate and graduate degrees in engineering before going to med school. We talked a bit on how things have improved since the dark ages of my diagnosis. I told him of my rabid scanziety driven by a 12-day dwell from test to results. He told me I’d not receive the same treatment if I was diagnosed today. I told him I was happy I was not being diagnosed today, or was I? I find inspiration when encountering stirring words while reading. An article about Joshua Chamberlain, a professor of languages and rhetoric at Maine’s Bowdoin College, told of his exploits as the country slipped into the Civil War. Chamberlain knew nothing about soldiering when Maine stood up its first regiment and declined the governor’s offer to command claiming insufficiency. But, he joined the cause as a lower ranking officer to learn how to soldier. He learned well. His leadership and commandership at the battle at Little Round Top during the second day of Gettysburg is still studied by current-day Army officers. For his courage, skill and character in that battle, he was awarded the Medal of Honor. On dedicating a memorial to Maine soldiers at Gettysburg, 25 years after the battle, Chamberlain asserted “it is character that tells.” Similarly, the tell in surviving lung cancer is character. Chamberlain said: “What I mean by character is a firm and seasoned substance of soul. I mean such qualities or acquirements as intelligence, thoughtfulness, conscientiousness, right-mindedness, patience, fortitude, long-suffering and unconquerable resolve.” A “firm and seasoned substance of the soul” that results in “unconquerable resolve” to survive. That essence is built day-by-day as we endure treatments, sometimes cycles of treatment, sometimes cycles-upon-cycles all with uncertain outcome. What was my scan outcome, you ask? All the typical magic nodules waxing and waning from scan-to-scan showed up. He laughed about me charting their location by spreadsheet. And we had the hypo-dense vs. hyper-dense liver lesion discussion, and a remark about that kidney stone that has been hanging around for 10 years. Then he told me he was reducing my oncology appointments to 1 time-per-year and changing up my scan to a low-dose CT chest type without contrast. He said that interval and type of scan is fully appropriate for one cured of lung cancer. I guess scanziety builds character! Stay the course. Tom

Here is a list of commonly used acronyms that are found throughout this site. I am SURE I missed a lot so I hope that as others come across more they will add them to this tread. Warmly Christine lc, lung cancer sclc, small cell lung cancer nsclc, non small cell lung cancer SOB, shortness of breath NED, no evidence of disease Dx or dx diagnosis Tx or tx treatment B-I-L, M-I-L, F-I-L, S-I-L, Brother, mother, father, or sister in-law SO significant other DH dear hubby ONC, oncologist PCP primary care physician METS, metastasis VATS, video assisted thoracoscopic surgery WBR, whole brain radiation SUV, "standardized uptake value," which is based on the amount of metabolic activity resulting from the pre-scan injection of irradiated sugar

Hello All... I thought I'd visit this really quiet support forum. I don't see questions coming from new Durva people or anyone telling us how their infusions are going and if they are having any side effects or questions. How is your blood work, fatigue? Are you having your TSH checked? Mine went up to 139 with no one testing, normal is .3 to 5 mU/L. Get your Pd-L1 checked too. I want to share my good news with my fellow travelers. Today is my 5 year canceranniversary. After all the tests I was diagnosed with Stage 3a lung cancer. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo. I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and lucky me after that I got to take Durva. I have been in remission for 3 years now. I want people to know there is hope and Durva does work for many. Stay safe. old joke ....My aunt’s star sign was cancer, pretty ironic how she died. – She was eaten by a giant crab

Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. Looking forward to marking next year's cancerversary with all of you.

Happy Friday to All, February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕 Questions I had for Oncologist 1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero. R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators: Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 2) What now? R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months. I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. Thank you everyone for your support. Take care, DFK

Katum31, Hi and welcome. So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis. I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence. Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now). My mom was also a late-stage diagnosis. Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects. Here is what I can tell you about my experiences, maybe it will help a bit. Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it. The major side effect was tiredness. My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer. She's only in her 30's, but all she experienced was some tiredness. Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer). She was in intolerable pain from the bone mets. After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects. She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point. Luckily, non small cell lung cancer is not as aggressive. Chemo - my mom has gone through 2 different bouts of chemo. The first time she did great, the second time, not so great. One major determinant of chemo effects is the type(s) that your mom will be getting. Do you know what chemo(s) she will be getting yet? I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be. With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started. But my mom is a VERY strong person. She pulls through all of these health issues like a warrior. I am happy to hear that your mom is a warrior too. The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge. It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get. There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap. My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there. Also, reach out to us. There are so many survivors here that can likely answer just about any question you have. We are here for you. You are not alone. And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY. Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do. Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what. Take care, Steff

Hi there, and welcome. I'm sorry about your mom's diagnosis. Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it. It's great that she came through the brain surgery so well. We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope. Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with. But the others will be along soon. Glad you found us--this is a great place for information and support.

Today I celebrate three years of survival! I am so happy to have found this community of people. You all make this journey so much better.

Isn't the shirt great? Got lots of smiles from my fellow baldies at the oncology center.

Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com You are not alone. xoxo Linnea

Twenty years ago, on this date, I was handed a surprise diagnosis of lung cancer in an emergency room. The X-ray showed a very large tumor in my right lung that perfectly explained hemoptysis, the reason for my ER visit. My GP admitted me for a diagnostic work-up, and I spent 4-days inhaling albuterol while being scanned, poked, and prodded. In the hospital, I met my medical oncologist and pulmonologist who told me I had about a 7 x 2.5 cm tumor filling the main stem bronchus of my right lung. The tumor was bulging into my airway causing vigorous coughing and complicating an unsuccessful flexible bronchoscope biopsy. Several drama-filled weeks later, my thoracic surgeon performed a biopsy to reveal squamous cell carcinoma. Unusually, no lymph nodes were involved. Staging was complicated; no lymph node involvement suggested IIIA but size pointed to IIIB. There were few resources in those days explaining lines of treatment or prognosis. The American Cancer Society suggested smoking cessation as a treatment method. Dr. Google revealed I might have 6 months of remaining life. Treatment started with chemoradiation to shrink the tumor and allow a pneumonectomy and ended with precision radiation to fry a reluctant tumor camping in my left lung (metastasis after surgery). I had 4 recurrences and 5 lines of treatment before achieving no evidence of disease (NED) in March 2007. My medical oncologist deemed me cured of lung cancer in March 2021 and then retired from practice. What have I learned? Medical statistics predicting remaining life by stage and type of lung cancer are imprecise and inaccurate, even today. Why? Listen to this elegant essay “The Median isn’t the Message” by Professor Stephen J. Gould that kindled the first ray of hope for a good outcome. Depression does not improve by ignoring symptoms. Thankfully, doctors who treat lung cancer today are assessing for depression and referring to professionals. Expect to be depressed and cooperate with treatment. Faith and hope matter and I believe they influence outcomes. I am a man of religious faith, but faith is an innately human trait. Religion is not required to believe treatments not seen are working to combat lung cancer, and faith fosters hope, and “hope is a good thing and good things never die.” Finally, consider that if I can live, so can you! Stay the course. Tom

Hi all, thought I'd finally post something after 18 months of fighting stage IIIa NSCLC. It may offer hope for those in despair. I'll try to make it short and sweet. I was a 49-yo runner, cyclist, and avid skier/ski patroller, and a non-smoker with no other comorbidities. Was ski patrolling December 12, 2021 and felt like crap, was having a lot of trouble breathing, which had progressed from faint wheezing a year prior. Saw 3 doctors on December 14 (an ENT--he thought I had post nasal drip; my husband--he thought I had an upper respiratory infection; and my pcp-she thought I had allergies.) I asked my pcp for an x-ray because I KNEW something was terribly wrong. Went immediately for an x-ray, and when I was at the grocery store an hour later to buy Flonase (per my pcp suggestion), my husband called and said to come back to the hospital immediately and get an MRI. There was a HUGE mass in my left lobe and all of my mediastinal lymph nods were ginormous. Turns out it was a 7cm x 6cm x 6cm malignant tumor in my ULL with a 70% PD-L1 expression. Had connections to a surgeon at MD Anderson who was hoping to do surgery, so I flew back and forth for these appointments. Did 3 rounds of Cisplatin, Alimpta and Keytruda at home in hopes of shrinking it for surgery. It didn't work (might have been inflamed from the Keytruda instead of tumor, but who knows). Then did 7 rounds of Taxol, Cisplatin, and Imfinzi every 3 weeks. Also did 35 rounds of radiation. Tumor responded to these treatments and shrunk by about 50%. Started Imfinzi every 2 weeks for 2 years (just finished a year), and did a PET scan this past April that showed NED. I'm still in disbelief. My next CT scan is this Tuesday. I am hopeful I am still NED, but am still scared, as I am coughing a TON after last week's infusion. Coughing so much it's giving me a headache. For my treatments I cold capped (for the Taxol one) and didn't lose any head hair, but the other side effects were hand and foot aches (neuropathy), 30 pound weight gain (145 to 175), cough (!!!), headaches, and overall fatigue. My ears are much better, but loud noises still bother me. My labs have been pretty normal, never had a problem with thyroid or kidneys. I even started ski patrolling again this past winter! So anyone reading this....DON'T give up hope. I did, I was in deep depression and despair, as I had 14 and 17-year-old daughters. But western medicince can work. Immunotherapy can work. I still have trouble with thinking about the future--I have read too, too much on longevity for cancer patients, but I'm really trying not to freak myself out. I'm also incredibly private and don't talk to anyone about it. Like NOBODY. Here's to hoping that it's dead and that it doesn't come back. Will update later this week. Stupid fricking cancer! Good luck everyone.

Hi June, Sorry you have to be here, but if you have lung cancer, you won't find a better group to hang out with. I hope you got some good info from the conference. I learned some helpful things. And the upward trajectory on treatment options and research is amazing. One thing I learned is the benefit of having both a liquid and tissue biopsy. As one doctor said, tissue is the gold standard, but sometimes that's not possible. The benefit of a blood biopsy is that it yields results much more quickly-- days, instead of weeks-- and may give information to speed the development of a treatment plan. I don't think it's possible to feel anything but scared, overwhelmed, and angry at the beginning, so if you don't feel hope yet, just let us have hope for you. For example, I'm also a Stage 4 person, and was pretty sick for a while. But I just finished a week's vacation on the Olympic Peninsula in Washington, where we hiked and rode bikes. I've been working consistently on building toward my former levels of fitness and was happy to be able to hike upwards of 8 miles a day. And, after a year of being off of my bicycle, I did a a 20 and a 30 mile ride. So, onward. There is life with stage 4 lung cancer and we can make it worth living! Hang in, we're rooting for you. Karen

Hello Everyone! I'm not new. In fact, my Adenocarcinoma (Pancoast) lung cancer journey began in October 2004. I was diagnoised at State IV. Mets to chest wall and liver. I was given 2-6 months with treatment and 1 to 2 years with treatment. I've had reocurrences. One time, I was told to get my affairs in order. Yes, I'm still here. Thank God. It started off crazy (as I would imagine, everyone else did too). But, what I am searching for are connections. People like myself. Someone to relate to. Anyone who has the same issues (or close) as mine. I have had my share of issues over the past (soon to be 17 years). The feelings, the thoughts they keep coming back to a word I discovered a few years ago. Guilt. Then there is the treatment. I'm still on Tarceva. I've been on Tarceva since 2005. Sometimes I feel stuck in time. The world moves on. My issues might be unique. I don't know. Sooo.... I have lost so many friends and family members during this 17 year survivorship. I can no longer count them on my fingers. I meet people at my checkups and I want to encourage them. But, I know in my heart they are asking WHY NOT ME??? You see, there is no reason. There is no medicine. No answer. Nothing I've done or didn't do. It was all out of my control. I've got nothing to say. No support. No advice. No secret. Nothing. That leaves me feeling like a failure. Like I'm not doing what was intended for me to do. But, what exactly is it I'm supposed to do? Doctors see me at my checkups. They read the scans. They check out new areas of interest. They say I am a miracle. I go back and forth between 3 month checkups to 6 month checkups and now again I have graduated to a yearly checkup. Please do not misunderstand, I am grateful. I am scared too. I am always scared. When I was diagnosed, my son was 6 years old. I grieved all the things I would miss. I have a 9 month old granddaughter now. Imagine that. I have everything to be grateful for. Yet, this old feeling seeps in. I think it's called Survivor Guilt. And I know it's a lonely place to be because there aren't many. I want more! I want you to know that I cry for you. All of you. I am so sorry that many of you are going through the worst fight of your life. Make everyday count. That's all I can do. That's all I did. I talk to God alot! I no longer take things for granted. I am not a miracle. I am so much less. And Everything and Everyone I see is so very beautiful and so precious. Life has it's share of hard times. This body, this Cancer did not define me! I continue to turn it into a Blessing. Not an End. My body may end one day, but I won't. Since I am always searching for the Why (because I am human) I ran across this and I thought it would be worth sharing... Isaiah 57:1-2 King James Version "The righteous perisheth, and no man layeth it to heart: and merciful men are taken away, none considering that the righteous is taken away from the evil to come. He shall enter into peace: they shall rest in their beds, each one walking in his uprightness."

Dad, you've done so well, you should be so proud of how far you've come and how much you've over come. Everything you've gone through is just another hurdle, which you have successfully jumped. Youve smashed every treatment they have thrown at you. You will be a survivor. And your becoming a helper to others who are sadly on the same journey as you are on. The treatment will be successful and we will be us again, I promise you. You are going to get better dad. I have so much faith in the treatment and in you. I love you dad. X Cody x

Hi everyone I got the results from the CT scan today the lung tumor is continuing to shrink and there is no other spread of the disease to anywhere else, they said they were hoping for just being stable but that this is even better than they could have hoped for, it is definitely a relief to have some good news for a change and has made me feel a bit better about the future hopefully all will be good with the gamma knife radiosurgery and they can get rid of them aswell thank you to everyone for the support Take care Justin x

Lizzy I wanted to wish you the very best and try to offer some inspiration!. I was diagnosed almost 7 years ago (this month) with Stage IV NSCLC Lung Cancer that had spread to my brain. I never had any warning or symptoms of Lung Cancer ,so it was a huge shock. It was the brain tumor and edema that caused me to see my PCP and have an urgent head CT Scan. Today thanks to ALL my treatments (Stereotactic Radiation for the brain tumor), the Chemo, following by Radiation to my chest and lastly Immunotherapy. I am now Stable/NED and doing well. I have been off ALL treatments for over 5 years and continue to remain stable. I did take Keppra for about six month while in treament for my brain tumor and it was very effective in keeping me seizure free. I was also on Dexamethasone (steroids for several months to keep the brain edema down and also help with chemo side effects. It too, worked well. I also have severe claustrophobia so the treament was a uge challenge for me, but I got through it. ❤️ I am happy to know you opted for a Port and always recommend them to folks who are having infusions. I still have mine and love using is for labs and contrast for my scans. I go in every 6 weeks for flushes! I was the same age as you at diagnosed and am very thankful and blessed to be a long term survivor and HOPE the very same for you. I never ever could have imagined I would be where I am today at that time -- and I'm so grateful to my team for finding the best possible treatments for me. Take care and be well. I wish you the VERY best! ~ Lisa PS: When I was diagnosed I did not have any grandchildren - something I had always dreamed of. Thankfully I have now been blessed with 3 beautiful grand-daughters and they have become my "littlest inspirations" and were a huge milestone in my life. They are pure JOY and LOVE!

Tomm, CONGRATS! Welcome to the I'm done my Durva club. Barb will be coming around the corner very soon. Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. Stay positive and stay well. Hey Tomm, the K9s are asking why humans are wearing muzzles..

Good Wednesday to everyone #22 Infusion is history. Blessedly uneventful, All labs remain within normal parameters. I have been fortunate As I wind down with just 4 more infusions, I'd thought I give a run down of my personal experiences and side effects for the new initiates who may find themselves on Durvalumab and are learning from our forum. I've only included symptoms that were never present prior to my NSCLC and initiation of Durvalumab. Itchies-Broke out in a rash to my back about 6 months in. The rash quickly resolved but my itchiness to my back remains. I've had good luck in treating it with Hydrocortisone 2.5% cream and an antihistamine as needed. Pneumonitis- Diagnosed about 4 months in. From radiation therapy. Had to skip/postpone two doses of Durvalumab and was treated with Prednisone. Durvalumab was resumed, pneumonitis resolved and my pulmonary function tests improved and remain normal. I will be getting all 26 doses of Durvalumab. Generalized Aches and Pains primarily to my back and thoracic area- Very disconcerting as my chest muscles ache, my ribs ache, my lower back aches. Was told this is due to post chemo/radiation and Durvalumab. Tylenol works but if the pain really hobbles me, Motrin is my go to pain relief. Got my medical marijuana card and purchased some THC/CBD tincture......didn't work for me. Maybe I didn't titrate dosing properly but I just got really stoned and loopy and my pain was still present. Joint Pain and Joint Muscle stiffness- I've really noticed an "awareness" of finger, toes, ankle and knee pain about 8 months in to my infusions. To be fair, I've had a few tumbles where I have hurt myself but the healing has been delayed and joint pain more pronounced. Again, Motrin seems to help. Had a fall from my bike couple weeks ago. I called it a soft landing since the bike just got out from under me in a mud bog. I've never bruised so extensively. Fortunately, the bruising was the worst of it and my injuries were minor. Headaches- I mention this because I rarely suffered from headaches prior to Durvalumab infusions. Currently, it's a rare day if I don't have a headache for an hour or two. I do not treat with medications since it abates by itself. Skin changes- My skin bruises easier and little cuts and wounds take a lot longer to heal. My skin texture seems more fragile and my skin is definitely a lot drier. Weight Gain- Been a skinny whinny all my life so a 25lb weight gain is significant. My appetite has increased so I've had to pump up my physical activities which has been challenging since... Faitgue- Has plagued me from chemo/radiation to today. Unrelenting presence, I do the best I can do by maintaining my physical activities and pacing my responsibilities. Peripheral Edema to ankles, shins and fingers- After months of watching my ankles swell, I finally obtained some Lasix to use on an as needed basis. I had my wedding ring resized prior to my diagnosis so I am absolutely positive that my fingers were swelling and it was not weight gain. Fortunately, the swelling in my fingers subsided and I haven't had and ankle swelling since I obtained my Lasix Rx. I have been fortunate and have dodged the more serious side effects. Update on voice hoarseness and ENT appointment- Official diagnosis; Left vocal cord paralysis. Most likely caused by lung tumor impinging on my laryngeal nerve. Though, and here's the rub, usually if tumor is on the right, right vocal cord nerve affected and vice versa, if tumor on the left, left vocal cord affected. Well, I had to be different as my tumor was in my right lower lobe but my left vocal cord is paralyzed. I did have subcarinal lymph node involvement and that may explain why my left vocal cord is affected BUT, to be on the safe side, my ENT MD and Oncologist are now in discussions about either a Pet Scan or Cat Scan to rule out any progression in my left lung. In the mean time, I am scheduled for surgery next week Thurs to mediate my vocal cord paralysis and hopefully, allow me to get my voice back. Abdominal Ultrasound to rule out ascites- Results from yesterday pending. I will see my PCP next Tuesday and all my tests and "to do's" should come together before my surgery. What a journey huh.....one day you're skipping along fine and then BAM, you're slammed and get warped into this medical world of tests, procedures, adverse events, side effects and advocating for your own well being, for your LIFE. My son is a Navy SEAL and he told me I got this, that it was my fortitude and dealing with adversity that allowed him to be the man he is today. Nice words when your world is falling apart, and you sometimes feel overwhelmed, defeated and just plain tired. So to all my peers on this journey, hang tough, advocate and carry on. We can do this. We are doing this. Take Care all, DFK

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.

“I’m sorry, sweetheart these are tumors in your lungs and a form of lung cancer”. These were the words spoken to a vibrant, healthy 36-year-old female on October 19, 2017, by the thoracic surgeon. I knew that things were probably not good when he came in and asked if I was alone. Unfortunately, I was alone. Looking back, that day seems like a blur. I remember the ladies at the checkout desk asking how I was doing as they ask so many patients all day long. It’s mere customer service, right? I never made eye contact and mustered enough energy to say the word “fine”. I was far from fine, but I just wanted to get out of there. I never cried in the doctor’s office that day, but walking down that winding hallway and through the parking lot felt like I was carrying cinder blocks for shoes around my feet. The minute I got in my car and closed the door was the moment that I completely lost myself. I have cancer. I am going to die. My parents are going to have to bury their only child. My world felt like it had crashed. The days and weeks ahead were just amazing considering my new circumstances. People loved on me like I had never been loved on before. I received cards and texts and all sorts of support, but a part of me wanted to tell them that I was still the same person and I appreciated the cards of support, but that I wasn’t dead yet. Please hold the flowers too. My lung cancer diagnosis was a complete shock as it is to so many. However, I was asymptomatic and cancer was the last thing on my brain. I was hospitalized for a Bartholin Cyst. I had my yearly exam already scheduled with my OB/GYN and this exam was far from routine. I explained to the nurse that I was in pain and was running temperatures between 101-103⁰. I visited the local emergency room twice to attempt to acquire some relief and was incorrectly diagnosed. My OB/GYN admitted me to get antibiotics started quickly and mentioned a minor surgery, but before I went to the hospital, he wanted me to have a CT of my abdomen to identify the cyst prior to any procedure. Thankfully, the tech caught just the lower portion of my lungs on that scan and the radiologist noted lung nodules. When I went back to my OB/GYN for my check up, he mentioned the lung nodules and ordered a full chest scan. He informed me that people had benign nodules and they could be there from my severe infection, but that he wanted to just make sure that it wasn’t anything. The next day he called me to inform that the nodules were still there and he would like for me to see a Pulmonary Specialist. I agreed and the Pulmonary Specialist was very concerned about the number of nodules in my lungs which were over 100 scattered across both lungs. He conducted a bronchoscope and a needle biopsy for which both were non-diagnostic and I was then punted to the Thoracic Surgeon. The Thoracic Surgeon removed three wedge sections and sent the pathology off to Mayo Clinic in Arizona. After further molecular testing, my oncologist educated me on the different mutations and the path of treatment that would be taken for each of them. It was determined that I was Stage IV due to both lungs being involved and was positive for T790M. I began Tagrisso as a first line on November 11, 2017. After 6 months on this drug, my last scans read “barely perceptible”. I will keep taking Tagrisso until resistance occurs and hopefully there will be another inhibitor to take its place. When I was first diagnosed, I would literally wake up in the night in a panic. I couldn’t sleep, eat or function normally. I started browsing the internet for support groups and pages as well as social media. I found the LUNGevity private patient groups on Facebook and asked to be added to every single one of them. I began telling my story and people started responding to me and sharing their stories. Strangers were sending me encouraging private messages. I saw people living and thriving with an incurable, life-shortening disease. I found hope. I started sleeping and not crying so much. Finding those support groups really made the initial journey a bit easier. Although we were strangers, we were brought together by a common bond. I’ve since been able to meet some of those people in person through the HOPE Summit and my “family” has grown by leaps and bounds. I would have never met these incredible people without lung cancer. Receiving a lung cancer diagnosis is not something any of us would have willingly signed up for, but I am thankful that I was able to find out before it spread all over my body and treatment options were expunged. I am also thankful for the perspective shift. I now know what it means to live each day with intent. The days of merely existing are over. It’s time to live and love life to the fullest because I now understand the value of each day that I am given.

I think we can all agree that chemo stinks. I had four rounds of cisplatin/pemexetred last year and I'm 3 weeks into 6 weeks of carboplatin/taxol for a recurrence. Last year, my girlfriends and I decided to have themes for chemo. One session was 80s and the last session was Mardi Gras. We had beads and boas for everyone. We're doing the same thing again this year. We had spring fling, beach fun, and today's pajama party. For some reason, my husband wants no part of the costume concept! I'm sharing this in the hopes that it will inspire you to find a way to get through chemo with a smile. If we don't laugh, we cry.

Hi luvs2crossstitch, I was recently diagnosed with adenocarcinoma in early February, I learnt it was stage 4 on the 28th. I am only 33. I understand what you are feeling. I am currently in residency, studying in Internal Medicine. I have spent my entire life being healthy, no smoking, hardly drinking, working out, studying. I feel like I've focused my whole life on the proper order of things, getting my career, that to have this diagnosed now, I know I am not ready. I am currently in the process of harvesting my eggs, since I have no children, and then i have to start lifelong targeted treatment, I have an ALK mutation, which I've been told is rare, especially in my age group. If you want feel free to message me, we can go through the stages together

We've all experienced that sucker punch to the gut when we, or a loved one, are diagnosed. But several physicians have told me and others on this forum that a positive attitude is so important in this fight. There are so many wonderful survivors on this forum that gave me, and continue to give me, hope. I read this today and think it applies to all of us on this forum: Don't die before you are dead. So, I move on with life and have decided not to die before I'm dead. Cancer be damned - I'm going to Hawaii in 4 months.