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  1. This is a very good podcast about EGFR+ lung cancer featuring the always great Dr. David Carbone, courtesy of the Lung Cancer Foundation of America. https://m.youtube.com/watch?v=M4kIBpqWRC0&feature=youtu.be
  2. Hi, my name is Darius Audryc from Singapore, and I've been fighting stage IV NSCLC / Adenocarcinoma since March 2021. I am now 30 years old. Although I have a stage IV LC, the tumour has only spread within the lung. However, I have a unique situation where my left tumour is more sensitive to chemo than my right tumour. Most of the doctors I met assumed that I might have two different type of cancers. And since the right lung tumour is more stubborn, we only did a genetic testing on the right lung tumour. Unfortunately, the result has shown that I do not have any known biomarkers. So I have less than 1% PDL1, no EGFR, ALK, BRAF, etc. My current treatment is chemo: Texotere (90mg) and immuno: Keytruda (200mg). I am hoping to learn more from people who have similar experience, which is stage IV NSCLC with less than 1% PDL1. What type of treatments have you done that is effective, and what other complications that you encountered? I am glad to learn about this community and hope to learn as much as possible.
  3. UPDATE 11/1/22: I got my results yesterday, still NED as I expected. I have now graduated to 4-month scans (previously every 3 months)! I've gotten to the point where I can tell which radiologist read my scans. Each one has a different writing style. For the first time, "a few" apical nodules in my right lung were called out, the largest being 6 mm. I was only aware of the large one, but these nodules are all stable and are not worrisome. ORIGINAL POST: Three years ago today my primary doctor told me that an Xray showed a 6 cm mass in my lower left lung. Lung cancer. You hear those words and your head starts spinning. But, she said, it's not a death sentence anymore. I knew nothing about lung cancer and really didn't believe her. I was referred to a pulmonologist, medical oncologist and radiation oncologist in quick succession. On Halloween 2019, my pulmonologist performed a rigid bronchoscopy to take tissue for biopsy and biomarker testing. The results were Stage IIIB NSC adenocarcinoma. It took time for the biomarker tests to come back in mid-November, and they showed an EGFR driver mutation. I still didn't know what that meant. November 2019 was a flurry of activity, seeing both oncologists, getting a port placed, getting dental work done and getting a bulk Teflon injection into my left vocal cord, which was paralyzed by the tumor. On December 3, 2019 I started the first of 6 weekly infusions of chemo (carboplatin and taxol) and 30 sessions of chest radiation. These treatments were not without side effects, and if I were to do it all again, I'd get a palliative care specialist on my team at the beginning. In March 2020 I started on Tagrisso for the EGFR mutation and have taken it daily since. My side effects are common and manageable. I never thought I'd make it this far but here I am 3 years later and NED. I found LUNGevity months after treatments ended, while I was still recovering. I wish I had found this wonderful community sooner, but better late than never. Coincidentally, I had my regular 3-month PET/CT scan this morning and will get results on Halloween. I don't expect there to be any changes. For anyone just diagnosed, I hope you'll learn as much as possible about this disease and all the modern treatments that are available. My doctor was right after all. I consider myself very fortunate that I have a great medical oncologist (even if he is a fan of the Phillies and Eagles) and the support of my husband, family and friends. I could not have made it this far without all of them and you!
  4. I am NSCLC stage IV and will be having a tumor removed from iliac very soon. I am considering ablation; 10 treatments of conventional radiation; high dose focused radiation over 2-3 days; and, low on my list, chemo again. I am just becoming familiar with these options -- most of which I learned from Lungevity (!) and its bloggers, and need some input, comments, knowledge -- anything that anyone's got. Also, I've heard of "CyberKnife" and am wondering if that is just a form of high-dose that can be done by other brands. I am very grateful for all I learn on these blogs. Thanks for being here!!
  5. Hello. I am new here and was diagnosed with NSCLC Squamous cell type, in Sept. 2021. I am 64 years old and a very active and healthy person prior to all this I was misdiagnosed for over 9 months with Post Herpetic Neuralgia and the cancer was found by chance after my pain doctor ordered an MRI due to longstanding shoulder pain and hand weakness and a rash. A large 9 cm tumor in the apex of my right lung was found. It was not operable due to location near my spine per a neurosurgeon. Initially my oncologist gave me "months" to live and guessed my cancer was at stage IV. I started Carbo/taxol immediately but after 6 weeks (2 chemo rounds) and multiple CT scans, MRI's, a Pet scan and a biopsy, it was discovered that though the tumor was large it was isolated in the right lung with some small mets to the mediastinal and clavicle nodes but hadn't progressed as first thought. A curative intent plan was presented to me and I chose to do concurrent chemo/radiation for 6 weeks. I finished that on 1/25/21. The large tumor shrunk about 2 centimeters and the questionable lymph nodes had just about disappeared or remained stable. Just this week i pressed my oncologist about what stage the cancer is now and he said stage III. I started Imfinzi 2 days ago. My PDL-1 marker was only 2% but still an indication that it might work. (Diagnosis: 1. right apical lung squamous cell carcinoma, involving the chest wall, ribs and T1-T3 vertebral bodies. PDL1 2 %. STRATA next generation sequencing showed PTEN, CDKN2A, MLL2, MLL3, TP53 mutations and MYC amplification. 2. Pancoast syndrome) I am feeling great! Shortness of breath (SOB) is the only issue keeping me from doing all I did before this happened. It looks like I have a couple areas of my lung that are collapsed Question: 1. Does the SOB get better over time? Is there anything I can do besides breathing exercises to help? 2. I have yet to find anyone with similar biomarkers to mine. Anyone? 3. What is the difference between the ways that tumors are staged? Prior to treatment my radiation oncologist staged me T4N3 which I know refers to the tumor size ""T" and "N" 3 lymph nodes involved. How does this correlate with Stage III? I hope I am making sense. LOL! 4. Could my tumor continue to shrink with Imfinzi? I have a very positive outlook and a strong faith base.
  6. Lisa Haines

    Covid and me

    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.
  7. 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.
  8. “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.
  9. In December 2016, I started experiencing a lot of shoulder pain and then back pain leading to shortness of breath. I went in for an X-ray and MRI, and was told I had pneumonia. I knew that wasn’t correct because I hadn’t been sick enough to get pneumonia. I spoke to my doctor and insisted on being seen again right away. I was sent to the hospital to have a CT scan, which showed fluid in the lining of my lungs. I had the fluid tapped for testing and it was bloody. I was referred to a thoracic surgeon and underwent surgery to have the fluid drained in March of 2017. During surgery they did a scope to look around and found and removed a cancerous mass. I was diagnosed with Stage IV adenocarcinoma lung cancer. I was in the hospital for five days. When I got out on a Friday, I met with my oncologist. They decided to test the mass for genetic mutations. My oncologist called me at home to share the results. I was expecting bad news, but she said she had good news. Genetic testing showed that my cancer was caused by the ALK gene mutation. She told me that having a genetic mutation was like winning the lung cancer lottery because there were very effective treatment options. At the time, Alcensa was still a second-line treatment, but my oncologist and I pushed for me to be able to start taking the drug. It was so new that I was one of the first patients at my hospital to start taking it. Just a few weeks after I started taking Alcensa, it was approved as a first-line treatment. I have some physical challenges that impact me. Some of them are shortness of breath, muscle pain and fatigue. I have nerve pain from my thoracic surgery as well. I am also dealing with mental challenges. I am working fulltime however, I struggle with memory loss, focus and vision issues, all of which are side effects of my treatment. I also deal with some depression. I explain it to family members as mental torture. You try to enjoy living but, you are always aware that your life can be cut short at anytime. The cancer consumes your thoughts 24/7. That is really hard. I recently became a member of the ALK Positive Facebook group, which led me to LUNGevity Foundation. ALK Positive has partnered with LUNGevity for a research grant for our cause. It’s a great partnership. I wish I would have known about LUNGevity and the ALK Positive online support group right away. LUNGevity really advocates for patients. They are such a great source for support and information. I noted that they share survivor stories and I immediately decided that I wanted to share my story with others. The more we talk about lung cancer, the more others learn and we can get rid of the stigma. Putting faces to this disease makes a real impact. I would tell a newly diagnosed patient to reach out to support organizations like LUNGevity. Knowledge is power and there is hope. The more you know about this disease and advocate for yourself the better off you will be. It’s a scary road but a little easier when you find good support sources. Survivorship means I am living with this disease. I hope to keep living with this disease for many years and provide support and advocate for others. I do not want to sit and wait, I want to take action to help myself and others as much as possible. We need to fight for more research funding and to make others aware of this disease. I hope to touch others with lung cancer and inspire them to share their story and find their voice to advocate. I want to get the word out about ALK lung cancer and remove that stigma that it’s a smokers’ disease. Whether you smoked or not doesn’t matter. If you have lungs, you can get lung cancer. I hope that as others find their voices too, we can get the word out about how we lack sufficient funding for research. That is really important to me. 433 people die each day of lung cancer – we have to change this!
  10. I found out that I had lung cancer back in August of 1999. I had 3 bouts of pneumonia in the first 6 months of that year. The last chest X-ray showed an area of concern. The next step was to have a CT scan of the area. I had the CT and they saw a blockage in my right lung between the lower and middle lobes. I was sent to see a pulmonologist and he scheduled a biopsy. He preformed the biopsy and they found a tumor that was blocking the area of my main bronchi between those two lower lobes. They tested the sample from the biopsy and it showed Non Small Cell lung cancer. I was staged at 2B. At that time they asked if I’d be willing to try a new approach in treatment. I said yes. The new procedure was to give me 6 rounds of chemo then 39 radiation treatments and the surgery to remove my two lower lobes in my right lung. The “old” way was to reverse those steps. Since then they have found no change in survival rates doing it one way or the other. My comment is 18 years and I’m still here. I think it worked great! Of course all these years later things have changed but not until recently. When I was diagnosed the Internet was in its infancy. There were no lung cancer support groups on line or in hospitals. We didn’t live long enough as a group to have a call for them. There were cancer in general groups but I was on the young side of the equation which put me in a smaller population. I wish there had been more groups or on line groups. I had a young family, I owned a small landscaping business and I paid my own health insurance. My wife was a stay at home mom who worked part time. We had decided it was more important to us to have the children have a parent available and I would just work longer. At that time my heath insurance was an HMO and was the cheapest I could find. But this is when the health insurance crisis started. My premium went from under $400.00 a month to over $1800.00 a month in a year’s time. I somehow managed to stay working through treatment and the surgery. Thank you my friends, relatives, and employees who carried a lot of the load. After surgery my wife had to go to work full time to get us health insurance. For a few months we somehow made it without insurance. I started the survivorship journey dealing with multiple doctors’ appointments, testing appointments and running a business. It was not easy but as with anything you make adjustments to fit it in. You have to. The first five years of this survivorship was learning how to negotiate my way. I’m in a physical business. I can’t do what I used to. I had had a bad back for years since the cancer, my back has been great! I can’t swing a sledgehammer or chase a lawn mower or anything rough that I used to do. Instead I worked my way around it. I bought a riding mower, can’t do all the lawns I used to but I can mow larger lawns easier. I can’t move wheelbarrows full of soil, rocks or even plants but I can run a tractor and do it that way. I can’t run anywhere but I walk and I get there slower but not that much slower. You will find new ways to do things and or you don’t do something’s. I remember my wife asking the surgeon what will my husband be able to do after the surgery. He said well if he said he played tennis, I’d say he couldn’t play that anymore. I guess the look on her face made him ask why do you ask. He owns his own landscaping business. Oh, hmmmm, I have never told a patient that they couldn’t do something but you’ll know what you can or can’t do. So that’s how I took how I’d live my life. I’ll try to do everything and see if I can. If I have to perform this or that I will find away. Over time I have realized how lucky I’ve been to survive this long. After a few years I went searching the Internet for someway for me to give back. I found the Lung Cancer Alliance through their website and online support group. That is when I started to talk to anyone who was newly diagnosed with lung cancer. I vowed I would try to make sure that no one would start this journey without someone to say I know how you feel and it’s ok to be scared, alone, and despondent. No one knows what it is like to have someone tell you, you have lung cancer, any questions? As they did to me the very first time anyone even mentioned to me that I had cancer. Scared is not even close to how I felt. I found out about LUNGevity from a couple of survivors who were on another site. I also found that I noticed more advocacy from LUNGevity in respect to serving the lung cancer community, informational posts that I found very interesting and the very active organization that seemed to be everywhere reaching out to those in need. It certainly fit with my own advocacy thoughts about trying to reach out to the newly diagnosed. As a closing thought, try to always keep in your mind, there is always hope, hope not only for today but for tomorrow and the next day and the day after that!
  11. My name is David, I am 53 years old and I was just recently diagnosed with non-small cell lung cancer with the ALK positive mutation. I am currently under came in with a clinical trial drug and I have responded very well to it so far
  12. Is anyone struggling with the concept of Chemo? And the tremendous toxins they want to inject in my body....verses possibly changing lifestyle and going the nutrition route? Of course every family member and friend wants me to go Chemo/Rad. I had 2 nodules removed from my left lung and a lymph node that it apparently spread to... The lymph node resting so close to my vocal cord nerve that I developed a "laryngitis" that caused the need to determine cause when standard measures proved to fail to solve. I felt great, short of the noticeable voice impact, and still do after surgery, short of obvious surgical pain. And to the best of my knowledge... Cancer free... I guess that's not true for quite a while... But I am not interested in the horrible odds of "5 year survival" and to endure all that Chemo and radiation subject you to... for that?? I have been reading up a lot on nutrition and juicing and Organics and GMO and of course I asked my Oncologist if nutrition mattered... "Of course not"... I am meeting with my Thoracic surgeon this coming Friday, Oct 20...I have preliminarily/generically been diagnosed with Adenocarcinoma NSCLC. The mutation not yet determined, awaiting results. The surgery was a secondary change of mind, initially they were considering Chemo/Rad first then surgery, but changed direction when they... and They being the Cleveland Clinic in OHIO...didn't feel they had enough of a sample to determine Chemo route... The surgery was basically a wedge biopsy of the lungs having done a biopsy of the lymph node 2 weeks prior. And even though it's in the Lymph node, they are not referring to it as metastatic....yet I suppose... I'm sorry this may be all over the board...but the surgery has bought me time to look over solutions and I'm on info overload. Initially, the Oncologist was suggesting Cisplatin and ALIMTA, but this may possibly change with further diagnosis.... Heard Cisplatin is more worse than C I am scared that I'm adding insult to injury with Chemo. There are sooooo many side affects that all I see is misery before death. Has ANYONE found anything else ... that does not have such a barbaric approach to finding a cure or reversal of our dianosis'. I do not mean to offend anyone who is choosing Chemo/Radiation...
  13. LaurenH

    Sam McBride

    Around the first of December 2015 I noticed I was having some shortness of breath when I climbed the flight of stairs to my apartment. I didn't think much of it at the time. I just chalked it up to my age (62) and being out of shape. As time went on the shortness of breath became worse and I developed a persistent cough with some transient hoarseness. I decided it was time to see the doctor. My primary care provider diagnosed me with asthma/bronchitis, which I had many times over the years in the past. He put me on an antibiotic and an inhaler which usually worked. As the days went by and I did not get any better, I went back to see him. He switched the antibiotic and prescribed a cough syrup. I still wasn’t getting relief, so I went back a couple more times. The doctor seemed to be getting frustrated with me, and I knew I needed to see a specialist. I scheduled an appointment with a pulmonologist. A chest x-ray showed a large pleural effusion. I underwent a thoracentesis, which revealed malignant cells in the fluid. A CT also showed several masses in my right lung. I was sent to a thoracic surgeon who performed a pluerodisis and biopsy. The biopsy revealed stage 4 metastatic non-small cell lung cancer (NSCLC) that tested positive for the ALK mutation. After learning about the advancements in the treatment of NSCLC, especially in the ALK mutation, I chose to have treatment. My oncologist recommended an oral targeted therapy drug Xalkori (crizotinib). He explained that the drug was not a "cure" but was very effective in shrinking or slowing tumor growth, which it did with very few side effects. Shortly after being diagnosed and before beginning treatment with Xalkori I started researching everything I could find about lung cancer just trying to get a better understanding of my disease and find support from others who were dealing with lung cancer, it was during this research that I came upon the LUNGevity website. The name was the first thing that attracted me, I thought it was a neat play on the word longevity but as I began reading I soon realized there was a wealth of information and support there and that the organizaton was very actively involved with funding for research which really appealed to me because I feel it is through research that a cure will one day be found. I liked what I learned and decided to become a Social Media Ambassador so that I could help spread the word about lung cancer and clear up some misconceptions about the disease. I attended a Hope summit put on by Lungevity in Washington DC where I was even more impressed with the organization and the wonderful people involved with it. The LUNGevity website, Inspire, and the Alkies Worldwide Facebook group have been valuable resources of information and support for me. I am also a member of a cancer support group at my church. The biggest challenge to me is always living with this disease in the back of my mind. Every scan or blood test reminds me that there is a potential killer living in my body and I don't know what it is up to until I get my results. It is as much a mental disease as it is a physical one. To me, a survivor is a person who has overcome something bad and lived to tell about it. If I could give any advice or words of wisdom to a newly diagnosed patient, I would first tell them that lung cancer is no longer the automatic death sentence that it was in the past. I would tell them to demand gene mutation testing so they know what kinds of treatment options are available. I would also tell them that lung cancer treatment is a waiting game. It’s helpful to distract yourself with life and not to focus solely on this disease. Don't give lung cancer that much power over you! I hope that my efforts as a volunteer will help raise awareness and funds for lung cancer research. I want to make people aware that it only takes lungs to get lung cancer. Sam and her husband Bob in Jackson Hole, Wyoming, shortly after her diagnosis.
  14. This organization is looking for people who are willing to share their opinions about Non-Small Cell Lung Cancer. They are looking to speak with patients (ages 18-80) and caregivers with Stage III or IV Non-Small Cell Lung Cancer. Qualified participants will be compensated $100 (Telephone Interview) OR $150 (Focus Group) for their time and opinion. Anyone who is interested can email Patient.Research@schlesingerassociates.com to see if they are a good fit for the interviews! Please see the attached flyer for complete information. Non Small Cell Lung Cancer _ Flyer.pdf
  15. Starting a journey with my husband who has advanced stage 4 lung cancer. Where or what should we be thinking of doing ? We have our Faith, he was given 2 experimental chemo treatments of Keytrada(?) which was stopped. They planned on giving him Tarceva , can't afford it. Feeling hopeless. He isn't feeling that bad, tired and coughs a little so hard to even think that he might only have less than a year to live ! So overwhelmed on what we should be doing. Financially too. We have a furnace man coming tomorrow, have a leak in our 21 year old furnace..do we spend the money to get it fixed ($8000.00) or don't fix it because of medical bills, medications, etc .........so confused ! As a couple do people split up bank accounts ?? ..I know each State is different. So many questions .....sorry ! I will be praying for all of you. Many thanks !! Michelle
  16. Hi All, On July 31st I will have my first set of scans following 3 txs of Pembro+Pemetrexed+Carboplatin, preceded by Gamma Knife to 14 more METS than expected in my brain, for NSCLC stage 4. I'm surrounded by loving and supportive family and friends and life partner, Marc, but for the first time, despite not feeling any negative side effects from tx, I'm beginning to feel frightened that the tx may not have shrunk any of the tumors... I have been able to function fairly well psychologically, but the reality of the upcoming scans and consult are beginning to hit. I'm sure everyone has experienced this. Nonetheless, it is daunting. If anyone has words of wisdom about this part of the journey, I'd be most grateful. The results will determine the answers to many decisions I need to make related to my continuing work, continuing studies and how I choose to create meaning and use my time well. Staying in the now becomes harder as August first approaches. Thanks, All. Emily
  17. Good morning. I just wanted to say thank you to all who participate in this forum, whether it's a post, a response, or silent prayers and good thoughts from your home. I sign on every day to read how others are doing, and to see if I might share experiences to help others. This sight became my lifeline last spring and it's through this site that I discovered that a recurrence is not the end of the world, but merely a bump in the road. I think of you all every day, send prayers, and cross fingers and toes for good results. Thank you!
  18. Hello, my name is Christine. In Nov 2016, my Mom was diagnosed w/ Stage IV metastatic adenocarcinoma NSCLC (primary: right lung, spread to both adrenal glands, brain & right proximal tibia). She had surgery to remove the tumor in her right tibia, which they filled with bone cement to stabilize the bone. She has completed whole brain radiation, radiation to the right tibia, 2 rounds of chemo: Paraplatin (Carboplatin), Alimta (Pemetrexed) & Avastin (Bevacizumab) & 6 Opdivo (Nivolumab) treatments. The chemo & Opdivo were both unsuccessful. Since her last scans 3 months ago, the cancer is spreading/growing in the bones (spine, hip, both tibia, left fibula, & sacrum) in her lung, adrenal glands (lung tumor & adrenals mets doubled) & possible spot on the liver. The good news is the WBR radiation helped, out of the 13 mets only 1 is left. It seems as her cancer is receptive to radiation but not chemo or immunotherapy. The remaining treatment options are becoming scarce. The Oncologist offered 3 options: 1- Do nothing. See her once a month, if possible treat pain/issues as they arise. The Oncologist estimates life expectancy to be 3-6 months. 2- Chemo: Docetaxel 1x every 3wks. 3- Chemo: Gemcitabine 1x every week for 3 weeks per month. Estimated life expectancy for both chemo options is 6-12 months. However, based off her chemo history her QOL will be severely impacted. My Moms primary goal is quality of life & has chosen to treat issues as they arise. Tomorrow, her 72nd birthday, she will have her 1st of 5 radiation treatments to mets in her right tibia & fibula b/c they are causing severe pain. Sorry for the excessive details, I'm emotional, confused & scared. My main objective in writing tonight is to ask the tough question, what generally happens when treatment is basically stopped. I know everyones situation is different, so there wont be a cookie cutter answer. I'm looking for honest, straight forward, even blunt info as to what we are facing as this disease keeps spreading.
  19. Just a post to vent......I'm mentally and physically exhausted. I have finally hit the wall with this round of treatment. I endured chemo (cisplatin/pemetrexed) last year, but that cycle was a little more forgiving; one long day every three weeks. This round, I've had daily radiation for almost 6 weeks and weekly chemo (carboplatin/taxol). The chemo side effects aren't as bad, but I guess the daily grind of radiation, with the weekly chemo, and the fatigue have finally knocked me down. I'm also starting to lose my hair and Super Doc told me I'll have two more rounds of chemo in June and those two treatments WILL take the rest of my hair. I thought I was mentally prepared to lose my hair, but I wasn't. It's starting slow but at some point, I'll take matters into my own hands and just shave my head. But then I remind myself that I told Super Doc I'll do whatever it takes to beat this, and losing hair is just a casualty of this war. Thanks for letting me vent. Sometimes just putting it in writing helps me, especially because I know you've all endured this and so much more.
  20. Hello All, It's been a while since I've been on this site. In all honesty, I have been racked with anxiety for months now and really just need a place to get it off my chest. My dad is in the late stages of NSCLC, we moved him to hospice last week. It has been an emotional roller coaster to say the least. My dad has fluid in his lungs that gets drained every other day or so. He is finally not in a lot of pain. He's on a myriad of medicines and he is getting better sleep, but he is also becoming increasingly confused. He stares off for minutes at a time. He forgets what he is doing or saying in a very short period of time and he doesn't know where he is when he wakes up. On top of all of this, I am an anxiety sufferer, specifically healthy anxiety. I have had an irrational fear of dying young since I was like 8 years old and watched a documentary on kids with leukemia. About three or four years ago I was crippled by the thought that I had lymphoma. I lost weight, got night sweats, even thought I found a lump in my neck. I went to the doctor all the time until I was finally too afraid to go. Now my fixation is on ovarian cancer. As I watch my dad deteriorate physically and mentally, I become increasingly convinced that I will get cancer too. My anxiety causes very real symptoms, and can be incredibly distracting. I am just so overwhelmed. I wish cancer didn't incite such fear in me, but I've watched too many people die from it. Does anyone have similar problems? I'm scared that every time I talk to my dad it will be the last time, but I'm also terrified to suffer the same fate. The things I can control, I do right. I don't smoke or drink excessively. I eat a vegetarian, non-processed diet. I make as much of my own products as possible, but there are plenty of people who have done all the right things and still get cancer. Thank you all for letting me use this space as a place to vent my fears and worries.
  21. I was diagnosed with lung cancer in August of 2011 out of the blue, totally unexpected. I went for a regular checkup after experiencing some gastric reflux and abdominal pain. The doctor suggested an abdominal CT scan. He called me back into his office and told me that, although the scan was of my abdomen, a part of my lung had been included. A little shadow had shown up there that concerned him. He asked me to undergo a second CT scan, this time of my lungs. That scan revealed a prominent area of masslike consolidation in my left lower lobe. The next day I saw my pulmonologist, who scheduled me for a needle biopsy. At the time, he didn’t think that the scan findings really indicated a lung cancer. I was not concerned either, as I had never smoked and had little history of cancer in my family. I was traveling home from a visit with some friends when I got the call from the hospital. The emotional voice on the other end was cracking. I didn’t even realize that it was my pulmonologist. He said, “We got the results from your biopsy. You have a very large tumor taking up most of the left lower lobe of your lung. We have to get this right away. We’ll get through this honey.” It was surreal. I thought it was a mistake. I was diagnosed with non-small cell adenocarcinoma. They scheduled surgery right away to remove a lobe of my left lung. That was followed by chemotherapy. It was a very tough time. After I recovered from that surgery and the chemo, I just wanted to go back to my life. I’d been very happy with my life. I was a volunteer chaplain. I didn’t know any other survivors and I didn’t want to think about lung cancer anymore. They said I only had 15% chance of the cancer coming back so I wasn’t going to worry about it. A year later, the cancer came back. Looking at the scan, I felt like I was in a nightmare. The second surgery to remove the rest of my left lung was easier, because I knew what to expect. But after that surgery and treatment, I knew I needed to get plugged in and started searching online for an organization that could help. I liked that LUNGevity Foundation was constantly posting helpful information and seemed focused on survivors. Before I was diagnosed with cancer, I had enjoyed the experience of mentoring, so I applied to be a LifeLine support partner. Nikole from LUNGevity reached out and invited me to attend the HOPE Summit survivorship conference. One of my friends went with me and we had such a wonderful time. HOPE Summit changed my life. Before that time, I had been pretty isolated as a survivor. When I walked in and saw that many survivors, I was amazed and overwhelmed. Hearing others share their experiences changed my whole attitude. The main thing I came away with after HOPE Summit is “be your own advocate.” My amazing friends that I met through LUNGevity connected me with my current doctors at UT Southwest. Any time that you need support from LUNGevity, it is available. I am a LifeLine mentor to other survivors, but I also have LifeLine mentors who have helped me through two recurrences of cancer. They’ve really inspired me and kept me looking forward. Mentoring is a two-way relationship. If they’re feeling down, I can help them and if I’m feeling down, they can help me. It is so rewarding. I’m also a LUNGevity Social Media Ambassador. I’m a big believer in the power of connection. If we isolate ourselves, we focus more on the negatives and everything that’s wrong. But if you’re out there connecting with other survivors, you’re sharing the ups and the downs, you’re not alone. It really helps. The advice I like to share with other people who have lung cancer is if you don’t like what one doctor says, it’s very important to be your own advocate. It’s your life!
  22. 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.
  23. LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Alice T. Shaw, MD, PhD, has joined LUNGevity’s Scientific Advisory Board, a group of 20 world-renowned scientists and researchers that guides LUNGevity’s research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific strategy and ensuring that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives of lung cancer survivors. LUNGevity is the only lung cancer organization with a programmatic focus on early detection and Career Development Awards. Our researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The research program is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. Dr. Shaw is the Director of the Center for Thoracic Cancers and the Paula O’Keeffe Endowed Chair of Thoracic Oncology at Massachusetts General Hospital. She is also an Associate Professor of Medicine at Harvard Medical School. In addition to caring for patients with lung cancer, Dr. Shaw performs clinical and translational research. Her clinical research focuses on subsets of NSCLC that have unique driver mutations, such as EGFR, ALK, and ROS1. Her translational research focuses on understanding and making clear the mechanisms of resistance to targeted therapies; she is currently developing novel combination treatment strategies. Her research has helped to develop numerous FDA-approved targeted therapies for patients with oncogene-driven NSCLC, such as crizotinib (Xalkori®) for patients with ALK or ROS1 rearrangements. “We could not be happier that Dr. Shaw has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “She is a brilliant thinker, an innovator, and a compassionate advocate for her patients. In particular, her groundbreaking work that led to the development of Xalkori® has extended and improved the lives of many NSCLC patients. Her expertise and counsel will advance LUNGevity’s goal to increase and improve survivorship for those affected by lung cancer.” Read the full press release here.
  24. Hello, new to the forum, but 15 months into Stage 4 NSCLC, with NED at this point. Been on targeted therapy (Tarceva) for 14 months, with excellent results. But I'm being worn down by side effects. And my onc told me last visit that even though I am NED I need to stay on the targeted therapy drugs to prevent the cancer from recurring. For the rest of my life. While I am grateful I did not have chemotherapy and the awful side effects of that - I can work, I can modestly exercise, and do regular daily activities - I still detest the side effects and hate the fact I'm stuck taking "poison" to stay NED. My skin rash is only controlled by doxycyclene in high doses, which makes me uber-sensitive to sun so I stay out (a tragedy for me, maybe not others). I'm learning to live with my hair looking like a pile of pubic hair on my head. I've learned to "time" my GI distress and know what I can get away with and when. But what I worry about most is what my onc says will be "long-term effects of toxicity" with the targeted therapy drugs. He told me I'll soon have to begin monitoring for heart disease and liver disease. Other system failures/diseases will have to be watched. He reminded me that that is why he said, at the very beginning of my diagnosis, "you're life will be shortened, but that does not mean you'll be gone tomorrow, or even 5 years from now." Okay, that's bad enough, but maybe my psyche is getting to me. I swear my joints are giving out on me. I cannot sleep at night due to pain in my hips, knees, ankles and shoulders. I've severely cut back on running - can only walk now. I've mentioned that to my onc - he said that's hardly likely caused by the meds and I should go to my regular doc for resolution of this problem. My head is completely messed up. How can I be thankful for the life I've been given through these awesome targeted therapies, and yet curse the long-term effects. And is it "causing" a mental sense that my joints are affected? I'll go to my regular doc, as suggested, but just wanted to know if others go through the same thing?
  25. Hello, my name is Christine. My, 71 yr old, Mother was diagnosed in Nov 2016 w/ Stage IV metastatic adenocarcinoma NSCLC (primary: right lung, spread to both adrenal glands, brain & right proximal tibia). At diagnosis she was given an estimate of 6-12 months to live, which was quickly adjusted to 6 months after they discovered 13 brain mets opposed to the 3 they originally saw. She had surgery to remove the tumor in her right tibia, which they filled with bone cement to stabilize the bone. She has completed whole brain radiation, radiation to the right tibia & 2 rounds of chemo: Paraplatin (Carboplatin), Alimta (Pemetrexed) & Avastin (Bevacizumab). The chemo was unsuccessful. The cancer spread to multiple bones in her left leg, her pelvis & spine. They stopped chemo & started Opdivo last week. It is too soon after completing whole brain radiation to do another brain scan to know if it helped. I'm sorry for the information overload....I'm just trying to give as much info as possible to see if anyone here has a similar situation & could offer some words of wisdom, offer a glimpse of hope or suggest ways I can help her. Thank you in advance for your help.
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