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Found 38 results

  1. Hi all, I've been a member for a few months but haven't done a "full" post about my mom as I felt I would jinx the possibility of good news (desperate times call for desperate measures!) I want to write this post to share my mom's journey and possibly relieve someone else's anxiety, while gaining hope and info from all of you. So, here's her story: Overall health: 63 years old, obese, diabetes controlled with diet, sleep apnea, rheumatoid arthritis November 2015 - initial lung cancer diagnosis - NSCLC, stage IIIA. She had shortness of breath which lead to the discovery of a few small nodules. January 2016 - upper right lobe removal - we had to wait so long because my mom has Rheumatoid Arthritis and the meds she was taking at the time had to be out of her system. Surgeon found a few lymph nodes that were involved as well, unable to remove it all. She recovered from surgery quite well. She continues to have pain at the incision site, which we are told is normal. Overall breathing was better than it had been in years (she had a lot of emphysema in the lobe that was removed). February 2016 - 6 weeks of weekly chemo (can't remember which kind) and daily radiation - lost hair, pretty bad acid reflux which became controlled with meds. Some fatigue. Scans & more scans - she received the 1 year "all clear" in April 2017. We thought everything was going well. My mom's pulmonary specialist left, so she met with a newly established specialist. He was looking over her old scans because she was having trouble breathing. He suggested he scope her bronchi and he saw a concerning area he wanted to biopsy. Long story short, she has cancer on the back of her trachea that is hard to see in chest x-rays and CT's. We are thankful someone actually saw it, but frustrated it wasn't found sooner. They are calling it a recurrence, but several doctors aren't convinced it wasn't there the whole time and just did not respond to treatment. Possibility of repeat radiation??? This was an important question I wanted answered because I had seen differing answers during my research. About half of the new mass on her trachea is in the original radiation area. The radiologist says that he can do radiation again in the same area since enough of it is out of the original radiation zone but the likelihood of having severe side effects is very high. I asked about radiation seeds and internal vs. external beam therapy - he said they can all have the same result of increased side effects. He is one who believes the mass was there the whole time and did not respond to treatment in the first place. So he suggested radiation as a last resort if other treatments did not work. July 2017 - trachea stent put in to open airway (mass had airway closed 70%). Surgery was a breeze, she can breathe well. Mom was in and out of hospital after surgery with severe mucus build up. Still has mucus build up. July 2017 - Treatment plan - 8 rounds of Keytruda (she has the PD-L1 mutation), the first 4 with chemo - alimta carboplatin, every 3 weeks. New treatment info: Adding chemo to the Keytruda at the beginning of treatment is having better results than Keytruda alone. This information was released in June 2017 at a national cancer conference. It supposedly brings the effectiveness from 30-50% up to a flat 55%. We will take every small piece of help we can get!!! CT scan will be after the first 4 treatments to see how things are going. Keytruda and Rheumatoid Arthritis: her oncologist is unsure how her RA will react. Her RA has never been under control, so she deals with a lot of pain anyway. They are assuming she will have major flair ups. We will deal with those when they happen. Large doses of steroids and all RA meds can reduce the effectiveness of Keytruda, so we will have to get creative. July and August 2017- My mom is on her 2nd treatment. The biggest side effect is total exhaustion. However, she began her 1st treatment 1 day after spending nearly 3 weeks straight in the hospital. Her oncologist feels that the extreme fatigue is more likely due to recovering from her stent surgery and all of the hospital visits. She still has a lot of mucus and her pulmonary specialist is keeping it "sucked out". She coughs a lot and does not have a voice. We will learn more as we go but so far she's surviving and we feel things will get better with her breathing and fatigue. August 4, 2017 (a day we can (mostly) breathe) - PET scan results show that cancer has not spread (cue happy dance!!). So what now??? We live day by day. I take part in these forums to find support and to give support. After finally receiving the first bit of good news in several months (the cancer had not spread), yesterday was the first day I didn't break down bawling. We are finding our new "normal". She is being silly and laughing more. And in October, we are going to see Jimmy Buffett for the millionth time! I plan to update this post periodically with information that I think is important to share for those looking for information and when I need some advice or a bit of support. I appreciate each and every one of you for your kind words to all that reach out and for fighting to live so we all can have a little more hope at the end of the day.
  2. New. Caregiver for spouse

    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
  3. Keytruda

    My mom was diagnosed with NSCLC and was approved for keytruda. She has a small tumor in her lung and an even smaller, hardly visible one in her liver. Everything else came back clear. The keytruda will be her first treatment. What can we expect from this? Side effects? I know all cancer is different , but I would love to hear from someone who has taken it. Is it even possible this could shrink her liver tumor so they can operate on her lung or lead to remission? She is obviously stage IV so I know it is very serious and I'm worried about how much time I have left with her. My other question is, they never told her the size of the spots in her lung and liver. This may be a dumb question, but do the size of these matter at all or give any indication how advanced it is? She doesn't ask any questions during appointments so I'm trying to learn as much as possible. Thank you in advance for any help you can provide .
  4. 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
  5. Good morning everyone, I have only written a couple times in this forum, but I have to express how deeply grateful I am for this resource. My dad passed away last Wednesday and I don't want this to worry anyone or bring anyone else's positive thinking down, but I just had to express that gratitude. Fighting cancer is so difficult. It's not a battle anyone has chosen and fight/battle seems like an inconsiderate way to describe it, because so much of the outcome is out of our control and those who lose the battle are not weak and did not choose to go. My dad was originally given 5 months to live and he lived 15. He was determined to hold on. As my sister and I process this grief and nurture the emptiness we are feeling, I can't help but feel like an entire village of people helped me through and this resource is part of that. I don't know what life holds for me, but I am constantly reminded how kind and beautiful human beings can be. Thank you all for everything. My life has fundamentally changed from the passing of my dad, but I will look at him with fond memories and celebrate him by being kind, determined and empathetic to every soul I meet. So much love to you all. Holding all of you in the light. Lily
  6. Thank you

    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!
  7. 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.
  8. Hitting the wall

    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.
  9. Caregiver Health Anxiety

    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.
  10. Rose Vining's Story

    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!
  11. Chemo with costumes!

    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.
  12. 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.
  13. 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?
  14. New Introduction

    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.
  15. Round 2

    I had a pet scan yesterday as a follow-up to my CT in February. As suspected, a lymph node near the aortic arch lit up. But nothing else lit up so that's reason enough to do a happy dance. I'll have a surgical biopsy to confirm it is adeno (same as primary tumor removed last year) and I will have a port put in. I have 6-7 weeks of concurrent chemo (carboplatin and taxol) and radiation and I am not about to endure that without a port. Doc will also send me for an MRI just to confirm the brain is still clear. Doc knows I have a trip planned for Hawaii at the end of May so he's trying to get this started so I can finish in time to take my trip. I will probably feel pretty crappy by then, but I'd rather feel crappy sitting on a beach. I was a little sad on Saturday - I presumed the misbehaving lymph node was cancer. I was a little sad today and then mad, but now? Let's get this fight started. I've already had 13 months since my initial diagnosis and that's pretty damn good. I'm ready.
  16. We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment.
  17. Happy cancerversary!

    One year ago today, I was diagnosed with late stage lung cancer following a lobectomy of my upper left lung. The rest of 2016 brought chemo, a second surgery, a second cancer diagnosis, and enough anxiety to power a small city. But all that matters is I AM ALIVE TODAY. There are so many cancer patients who don't make it this far and I will not take this for granted. I have three trips planned this year and get to see my precious niece marry the love of her life in a couple of months. Now I just have to get through tomorrow's scan results.
  18. Lung Health: Knowledge Is Power Early-Stage Lung Cancer Screening and Targeted and Immunotherapies for Non-Small Cell Lung Cancer (NSCLC) Join Stephen Broderick, M.D., thoracic surgeon and assistant professor of surgery, Johns Hopkins Medicine; and Benjamin Levy, M.D., thoracic medical oncologist and associate professor of oncology, Johns Hopkins Medicine and clinical director of medical oncology, Johns Hopkins Sidney Kimmel Cancer Center at Sibley, to learn about early-stage lung cancer screening and targeted and immunotherapies for NSCLC. Thursday, March 16 6:30 to 8:30 p.m. Building A, Floor 1, Conference Room 1 5215 Loughboro Road, N.W., Washington, D.C. Free program, complimentary parking and light refreshments provided. Space is limited, so register today at Sibley.org or 202-243-2320. KIP Lung Flier-3-16-17.pdf
  19. Mantra

    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.
  20. I joined last April!

    According to my profile, it seems I joined the forum in April 2016 and then promptly forgot about it. As I was trying to register yesterday it said my email was already in use so knew I must have already joined. Finally was able to change my password so I'm back. I'm a 77 year old female dx with Stage 4 NSCLC in December 2015. I live in a small town in northern Michigan with my husband of 58 years. We have two children and two grandchildren.
  21. Lauren Humphries' Story

    Nothing can prepare a man and his family for a lung cancer diagnosis. I remember the night five years ago when my mom called me with bad news. My uncle, Keith, had just been diagnosed with Stage IV lung cancer. Keith is my dad’s youngest brother, who is always making everyone laugh and giving the best bear hugs. He is a husband, father, and small business owner who coached all of his kids’ youth sports teams and never missed a game. My grandfather passed away from paranasal sinus cancer when Keith was seven, so he grew up without really knowing his dad. Because of that experience, Keith is determined to never leave an empty seat at an important family event. The night we found out that our beloved uncle had lung cancer, my sister and I cried together and hugged each other for a long time. We started asking questions like, “How did this happen?” and “Why him?” and “What does this mean?” Then we realized there was only one question we could actually attempt to answer: “What do we do about it?” My mom was at our local farmer’s market when by chance, she met Cindy, the founder of Breathe Deep Baltimore, one of LUNGevity’s grassroots events. Cindy started the Breathe Deep Baltimore walk in 2008 in loving memory of her mom. The event was taking place in Oriole Park at Camden Yards. Monica Barlow, the Orioles’ former PR Director who had the same ALK-positive lung cancer as my uncle, was the keynote speaker. We had to be there. Our first Breathe Deep walk as a family was hopeful and somber as we celebrated survivors and honored those we’ve lost to this terrible disease. Monica spoke about the groundbreaking research that LUNGevity was funding and how important it is to be strong advocates. That was the first time that my uncle met other lung cancer survivors. Until that day, he didn’t have anyone to talk to who understood what he was going through. Breathe Deep Baltimore felt like my family was part of an important movement, and that we were accomplishing something together that was much bigger than what any one of us could have done alone. I had just finished grad school and all of my work and volunteer experience was in marketing and event management, including positions with Susan G. Komen and American Cancer Society. I decided to join the Breathe Deep Baltimore committee and help plan future events. I had no idea then that this group of wonderful people would become like family to me. This September marked my uncle’s fifth year as a survivor, a milestone we celebrated as a family. His first year of treatment included chemotherapy, radiation, and surgeries. He took Xalkori, a targeted therapy drug, for three and a half years and recently switched to Alectinib, both with very positive results. This September also marked my fifth year on the Breathe Deep Baltimore committee and my second year as a LUNGevity employee. Working for LUNGevity, first as a volunteer and now as a full-time staff member, is incredibly rewarding. As the Digital Community Manager, I interact all day on social media and our online communities with patients, survivors, caregivers, and advocates. I am incredibly thankful for the people who are working to create a world where people with lung cancer live longer and better because of early detection and more effective treatments. I am grateful for the opportunity to know and work with these people and to help support others whose lives have been affected by lung cancer. By working together, I am determined and optimistic that we can stop lung cancer. There are always an infinite number of reasons to be hopeful.
  22. Don Stranathan's Story

    I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends. I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver. In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try. At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years. During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing. That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested. In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen. I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung. This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront. In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible. After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure. I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing. So I know if I post my treatment plans I will hear from someone if I am off track. I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority. I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available. Since my girlfriend Penny Blume passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients. My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA. I was able to connect with Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease. When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live. It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest. Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family. My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you. Be well, Don Stranathan Stage 4 Lung Cancer Survivor
  23. New Here

    Hi all, I am was dx in March 2016 with Non small Cell Lung Cancer, Stage IV. I had a pleural effusion on my lung, bone mets on brain, spine and pelvis. Started Tarceva in April and Cyberknife radiation to my brain and spine. Most of the tumors have disappeared or shrunk by 70%. Meanwhile, an abnormal lymph node has shown up in my last PET scan and continues to grow a fraction of a cm. It was on the original PET scan but because lung cancer is more life threatening, my oncologist did not worry about it. In 2005, I had Large B Cell Lymphoma, Stage IV. After 6 rounds of CHOP and rituxan, I was in remission and stayed that way for over 10 years. I belong to a group called Inspire and really love it. Just recently, I found out about this group. If there is anyone out there with my similar lung/lymphoma cancers, it would be great to hear from you. Most days I feel great, lead a normal life and feel grateful for the advances in cancer treatments. Anna
  24. Is there anyone who has received Alectinib as a treatment who is willing to share their story? Lung Cancer Canada is looking for patients (and their caregivers) from the US and Canada to share their experience with this drug. You can contact them at info@lungcancercanada.ca
  25. Good News!

    Hi Everyone, I had a follow up with my oncologist yesterday to review a CT scan I had done last week. He told me I was "disease free" (his words) and I asked him to repeat himself, because it was the first time a medical provider had used such simple terminology to give me an update since my original diagnosis of Stage IB Muscinous Adenocarcinoma in July 2016. I will have another CT scan in November and should have the results from my gene sequencing then as well. Everything has happened so fast for me, from my diagnosis to my surgery, to my recovery, that it all feels like a whirlwind and I am trying to get my footing in place too. These last few months have been difficult at times, and I am glad I had you all to help me through this process. Thank you all! My journey in this life is far from over and I look forward to reading all your updates. ~Yovana