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Found 25 results

  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. Any insights into how to control thoughts of 'Is this my last...Mother's Day, birthday, etc... Any advice on dietary changes to help with GI side effects of Tagrisso
  3. HI Everyone, My name is Deirdre. I was diagnosed with Non Small Cell, Stage 4, EGFR in May of 2019. I am doing well on Tagrisso. I have mets to the spine and breast. I am "you". I am 50 and was diagnosed when I was 49. I have a 10 and 12 year old, boy and girl respectively. I feel incredibly lucky to work at Johns Hopkins and be from Boston. I have great care. I had a biomarker test right away and was put on Tagrisso immediately. It is working for me. I do have a question about tagrisso side effects. Lately I am experiencing some real fatigue--having a hard time getting up in the morning, sometimes taking naps during the work day, etc. I am also experiencing incredibly itchy skin. Deirdre
  4. My husband was diagnosed July 8th, 2021 with stage IV NSCLC. We attend appointments together in person or via phone. My first goal is to provide what he needs when he needs it which includes his mental health. It is imperative our knowledge is based on the most current information. My second goal is to become knowledgeable about his specific type of EGFR mutation which is why it’s imperative to be knowledgeable on his specific mutation to understand his treatment options better. My husband consistently informs me he’s unaware of the type. His doctor is very diligent and responsive. He could of simply forgotten or wants to protect me so I don’t Dr. Google everything. (Let’s face it we all Dr Google medical information all the time How do I find out? Do I ask my husband for permission to look at his MyChart? Do I ask at the next consult? Do I leave it alone and avoid upsetting him?
  5. Someone just posted this on FB and it is so interesting. I didn't know there were 70 different EGFR mutations. This must be why some people do so well on current targeted therapies and others don't. https://www.mdanderson.org/newsroom/classifying-egfr-mutations-by-structure-and-function.h00-159464001.html
  6. Through LUNGevity, Cure Magazine reached out to me last week for an interview about 9/11 and lung cancer. As a member of the 9/11 survivor community, I've always done my best to avoid each anniversary but this year I am facing 20 years head on. I'm posting this in LC Survivors because I am a survivor twice over. The link to the Cure article is below. They also interviewed Dr. Michael Crane, a medical director of the World Trade Center Health Program Clinical Center at Mt. Sinai Hospital in NYC. The written article weaves our interviews together, but within the article there are links to our separate interviews via podcast. https://www.curetoday.com/view/-the-clock-has-not-stopped-running-on-9-11-related-cancer-incidence-20-years-later I do caution you that any discussion of 9/11 can be upsetting for some. It still is for me, and I can't read many articles being written on this anniversary. So I will understand if you'd prefer not to click through.
  7. Journey sharing post. My 70+ year old asian mother was diagnosed with lung cancer in 2016 after coughing out blood. Initially detected tumor in one side of the lung. Was given some options, radiotherapy or targeted therapy (Iressa). We had hoped to remove the tumor, so we chose radiotherapy. It successfully removed the tumor, but after a few months, we detected the tumor in the other lung. So we started on Iressa. Iressa managed to control the tumor for many years, up till June 2020 when my mom started having very bad vertigo and vomiting, and progressively became very weak, had tremors, motor function and balance badly affected, brain fog etc. Many sessions with ENTs and neurologists, but they could not identify the cause. Steroids helped the symptoms significantly. We did a brain MRI, found a tumor there (cant remember the size, maybe around 5 cm). Biopsy showed that this was the tumor from the lung. Surgery was done to remove the tumor and things improved. However, after a while, the vertigo and vomiting returned. Another MRI showed some smaller tumors grew to 1cm, and did radiosurgery to remove them. The vomiting continued after the radiosurgery. The many doctors were trying to rule out other possible reasons ie bacterial/viral infection etc, but nothing conclusive was found. Oncologist suggested that there may still be very small tumor cells in the brain lining that cannot be detected by MRI and these tumor cells may be blocking the transfer of fluid between the brain lining, causing all sorts of problems. He suggested to change the Iressa prescription to Tagrisso as Iressa cannot cross the brain-blood barrier while Tagrisso has some ability to do so. We started with double dose (80mg x 2) of Tagrisso, and slowly my mother got better. She's still not her complete self, she gets tired much faster, has infrequent dizziness and vomiting, but at least she's functional now. We have reduced the Tagrisso dosage to 1.5 tablets daily, instead of 2 tablets, no difference noticed from the change. So for now, my mother is functional and does not have much of the previous symptoms anymore. She has been taking Tagrisso for 10 months now. The cost of Tagrisso is a burden but I will try to make it work. My country, Malaysia, has not authorized the use of the generic Osimertinib, and any attempts to order them online will result in warnings and potentially fines and imprisonment. I welcome questions or comments or insights. Note that my memory of this 5 year journey might be inaccurate and my understanding of the doctors' explanations may also not be perfect.
  8. Annabelle Gurwitch is a member of one of the Facebook EGFR groups, and I've read about her difficult lung cancer story in other articles. She was recently on the Today Show to bring awareness for the need for research and funding: https://www.today.com/health/covid-19-test-leads-lung-cancer-diagnosis-annabelle-gurwitch-t216306 And a Philadelphia chef and his wife are in the news, also to raise awareness: https://www.inquirer.com/food/jim-burke-lung-cancer-tag-time-hapy-hour-20210504.html Great job by both of them.
  9. The Dana-Farber Chen-Huang Center is offering a free virtual event to learn more about EGFR+ lung cancer. Hear from experts, a patient and caregiver, get your questions answered, and learn more about skin toxicity, symptom management, available clinical trials, and emerging therapies. Registration link is: http://ms.spr.ly/6183Vc3YP
  10. This article was posted by a member of the LUNGevity EGFR Resisters Lung Cancer Patients Group. Not only is neratinib being tested as a targeted therapy for EGFR Exon 18 mutations but also HER and HER2 tumor mutations and for other cancers. Go science! https://www.targetedonc.com/view/neratinib-is-effective-against-egfr-exon-18-mutations-in-nsclc
  11. I would like to request for help and support for my father who’s just been recently diagnosed with Non-small Cell Lung Cancer. We’ve been told we are at Stage 3B and has been prescribed with Tagrisso. We’re already one month in with this treatment and we are scheduled to have another PET scan on Jan 7, 2021 and meet with our medical oncologist on Jan 11, 2021. I have tried to read and absorb as much as I can regarding my father’s disease and found that given that my father is at stage 3b, I was wondering if we should have pursued surgery or a more aggressive treatment like chemo or radiation for him. I am also trying to understand because on his first PET scan besides his main tumor on right lung and some lymph node involvement, it also indicated the following: “Stable nodular right pleural thickening with hypermetabolic activity, suggestive of metastasis.” He does not have mets anywhere else besides what is in his right lung, lymph nodes and this pleural thickening. I have read and read a lot and most with pleural involvement say it’s Stage 4. But we’ve seen 2 oncologists and both did say Stage 3B. I guess what I think now is if we’re really stage 3B, we should be more aggressive with treatments if we can tolerate those. But I’m not really sure if we are staged “correctly”. I was advised to seek 3rd opinion from US (we’re based in the Philippines), I would love to do that but I’ve seen costs for remote consultation in Dana Farber and it’s USD 2000 - that’s equivalent to 1 month of Tagrisso here. It may seem much less than 16k cost of Tagrisso in US but taking into account our currency value, 2K USD is already a lot of money. So, I’m not sure if 3rd opinion from US can be an option for us. I’ve also read some studies wherein those on Tagrisso also receive local therapy. I’m not sure if this is an option we can pursue given that we’ve already started Tagrisso. I am just so overwhelmed and all I really want so badly now is to get the best treatment option for my father so we’ll have him for a long long time or better, he gets the best chance for remission or even cure. I’m not really sure what my question here is but if you have the same experience, and can give us much needed advice on next steps, or what to ask our oncologist next week with our 2nd PET scan results, that would be great. Thank you so much!
  12. Hi everyone! I’m Melissa and I live in Baltimore. I was diagnosed with Stage IV Adenocarcinoma in July of this year after having a nagging cough that would not go away. I have been on Tagrisso and as of October my scans showed the tumors have shrunken by 50%. I am so thankful to be living in an age where Tagrisso is even an option! I have an amazing support system of husband, family, friends and colleagues who have gone above and beyond with help and this has gotten me through 2020. I had lost my job due to COVID about 5 days before my diagnosis so it was a real double punch for life changes. I was so uncertain of what to do next and what I should be doing with myself. My husband and I were ready to find our dream home and I really loved my job. All at once, it felt like our future was ripped away from us. I did make the decision to keep working and was SO fortunate to find employment at a wonderful organization. This has also allowed us to begin the search for a home again. I’m terrified of making such a huge commitment since I don’t know what my next scan holds but I try to read the stories of other survivors and believe that I have many years left. I decided to reach out to the support group because up to now, i haven’t talked to anyone else with my diagnosis and I want to hear stories from people who share my experience. I also feel the need to give my. Are takers a break from my every worry that I have about my health because I know they worry so much too. Thanks for reading my story!!
  13. Hello all, My name is Amber and I was diagnosed in October last year after “pulling a muscle” in my back. Turned out to be broken ribs caused by mets from Lung cancer (primary tumor in the R upper lobe with spreading to lymph nodes and bones such as the ribs, spine, pelvis, thighs, scapula). The neck of my left femur was almost eaten through so I had surgery the next week to put a rod in my thigh. No rehab!!! I realize I should have gotten rehab as i didn’t move enough after the surgery and lost so much of my range of motion and flexibility. (I’m certified in yoga and now I can’t hardly even lunge!) I got a second opinion and a referral to MDAnderson for a clinical trial of Poziotinib. I started it over Christmas last year ( i should have waited) and dealt with the side effects until Feb when a scan showed a lot of progression. It unfortunately didn’t work for me. I started carboplatin/alimta/keytruda in March and had several scares with fevers etc right when Covid was gearing up. Absolute insanity. A UTI and infected port later I changed oncologists for the third time (it was a crazy roller coaster of a ride with oncologists oct-may). Things finally settled down and I got on track with my maintenance infusions of Alimta & Keytruda. I started having severe flare ups of an arthritic nature and they became more and more frequent over the summer. I tried OT/PT but it just helped get around the pain. I saw a rheumatologist and was prescribed steroids which knocked out the inflammation and nerve pain (from arthritic symptoms from keytruda such as swollen joints). I felt like million dollars the first week or so. I was then given Methotrexate to build in my system as we started to decrease the steroid. I feel pretty good physically except after my Alimta infusion. It takes a few days to recover but it’s waaaaaay better than what I’ve previously gone through, So now I look at my life and sigh. I withdrew my kids from school as “distance learning” did not work for us. My husband hides in work and alcohol as he has always done and I’m trying to find the spiritual significance of all of this. I’m not Christian but live in a very conservative/Christian area. I’ve finally found counseling for the kids and myself but am struggling with the idea of staying with my husband. The life I have left I want to live for me. But that’s a big leap and I’m trying to find the courage to do it in the middle of this madness. Sorry, not a feel good uplifting post but it’s a nutshell of the last year. Thanks for reading and I’m happy to find a place for support and information. Have a great week:) Amber
  14. Hi, my mom was diagnosed with Stage 4 - NSCLC in January of 2019. Her main tumor was in her left lung and the cancer had spread to her lymph nodes by the time we found out she had cancer. Her first line of treatment was tagrisso - which was ultimately working fine until March 2020, the month she turned 50. She did have a couple of side effect issues throughout the year, but now we have gotten news her cancer is now resisting the tagrisso. She received a thracentesis and the results are that she has malignant pleaural effusion. The fluid has since come back into her lungs and her oncologist has recommended a Pleurodesis to help stop the fluid from accumulating. As for the MPE, there is new cancer on the lining of her left lung and her main tumor has grown. Her oncologist would like her to begin a clinical study of a combo of chemotherapy + Immunotherapy. Durvalumab + Platinum Doublet Chemotherapy (pemetrexed + carboplatin) I want to know what to expect as my mom has never received any type of chemo. treatment. I want and know my mom will live a long and prosperous life, but I want to make sure she is at ease and doesn't worry too much. Any advice at all is extremely appreciated. I read some of your stories and they are so inspiring and are one of the top reasons I keep strong for my mom. She's my best friend and I still have yet to show her the world. Thank you in advance!
  15. Good morning. I am new to this group. I was diagnosed with stage IV lung cancer last August 2018. Mets to brain, bone and adrenal gland. First line treatment was cisplatin, alimta and keytruda. Started maintenance in January so now on alimta and keytruda with someday every 3 months. Still processing all of this and trying to stay informed and educate myself. I feel great with no symptoms. After treatments I feel tired which leads to emotion, which is the only time I am reminded I have cancer. I remain optimistic however sometimes overwhelmed at how much information there is out there and how to stay on top of all of it. Hoping I can help others stay optimistic while at the same time looking to share experiences and learn from this group. Thanks for listening ♥️
  16. Here is the weekly clip report: OncLive “Dr. Larner on Integrating Radiation Therapy With Immune Checkpoint Blockade in NSCLC” https://www.onclive.com/onclive-tv/dr-larner-on-integrating-radiation-therapy-with-immune-checkpoint-blockade-in-nsclc Diagnostic Imaging “Low Dose CT Lung Cancer Screening Program Findings Similar to National Trial” http://www.diagnosticimaging.com/di-executive/low-dose-ct-lung-cancer-screening-program-findings-similar-national-trial Targeted Oncology “Immunotherapy and Chemotherapy Combos Are the New Standard of Care for NSCLC, Says Konduri” https://www.targetedonc.com/news/immunotherapychemotherapy-combos-are-the-new-standard-of-care-for-nsclc-says-konduri OncLive “Dr. Jotte on the Optimal Frequency of Lung Cancer Screening” https://www.onclive.com/onclive-tv/dr-jotte-on-the-optimal-frequency-of-lung-cancer-screening Targeted Oncology “Immunotherapy Combinations Are Changing the Frontline Treatment of Patients With NSCLC” https://www.targetedonc.com/publications/targeted-therapy-news/2018/August-2018/immunotherapy-combinations-are-changing-the-frontline-treatment-of-patients-with-nsclc Cancer Therapy Advisor “Heterogeneity of Drug Resistance in EGFR-Mutant Non-Small Cell Lung Cancer” https://www.cancertherapyadvisor.com/lung-cancer/lung-cancer-nsclc-heterogeneity-drug-resistance-egfr/article/786470/ Speciality Pharmacy Times First Checkpoint Inhibitor for Previously Treated Patients with SCLC Approved by FDA https://www.specialtypharmacytimes.com/news/first-checkpoint-inhibitor-for-previously-treated-patients-with-sclc-approved-by-fda
  17. 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.
  18. October 30, 2015 will forever be the day my world changed. That day I heard those words that no person wants to hear: “You have cancer.” I kept questioning how this could happen to me. I was a healthy, 35 year old nonsmoker, and a mom of two great children. I came to learn that you don’t have to be a smoker to get lung cancer. Honestly even if one was a smoker, would it matter? No one should have to go through this terrible journey. Soon after my diagnosis I saw a surgeon and was told that I was not a candidate for surgery, as my cancer had metastasized to the surrounding lymph nodes. Instead of surgery, I was scheduled for 35 sessions of radiation and two rounds of chemo infusion, believing that if the treatment was effective that surgery could be an option to remove the remaining cancer. After my initial chemo and radiation was complete the tumor in my lung had shrunk considerably and lymph nodes appeared to be clear of cancer. Good news, right? Unfortunately, new scans showed that what had been an inconclusive spot on my liver had now grown into a tumor, and my official diagnosis was changed from stage 3b to stage 4. The new tumor meant surgical treatment was no longer an option, and that medicine is my only hope. At that time my husband and I realized it was time to get a second opinion, which turned out to be one of the best decisions of my life. My new oncologist tested my cancer for genetic mutations. At the time, I had no idea what he was even talking about. Then I received a call from him on a Friday afternoon stating I have the EGFR mutation. I could hear the joy in his voice. After doing some research I came to understand that this was a very good thing, and within a few days I started to take a targeted therapy called Tarceva. My quality of life is way better than I would have ever thought possible. I’m now 37 and living with stage IV lung cancer, hoping that medicine advances faster than my tumors. During my initial treatment I was bitter. I did not want to hear “you can beat this” or “you are the strongest woman I know” or “you are a fighter.” I just wanted to get through my treatment and move on with my life. As much as I hate my cancer, it has taught me some valuable lessons. First, it taught me to slow down. I didn’t realize how much I was just trying to get through life, instead of actually living it. Ironically, I enjoy life more now than ever. Second, don’t sweat the small things. Living with a terminal illness helps one understand what‘s really important in life. Kateri and her family
  19. Hi everyone! I have been a survivor for close to a year now. I have NSCLC with brain mets. My LC has never produced symptoms but the brain mets sure did! A year ago i lost all touch sensation to the right side of my face, accompanied by excruciating pain that was originally diagnosed as trigeminal neuralgia. My family doc sent me to an ENT specialist who found nothing, said i needed an MRI, and there they were, brain mets and a lot of them. One was putting pressure on the trigeminal nerve root. The hunt was on for the primary and they found it in my lungs. Many small lesions. I started with 5 rounds of WBR and the day before i was to start chemo, my onc called to tell me i had the EGFR mutation (oh happy day!!) He started me on Afatinib 40 mg and i was good for the first 2 or 3 months, then WHAM hit with nasty nasty side effects. 2 wk break to let my body heal, then started again at 30mg. Im doing really well now. Chest xray is NED, CT still shows a few spots and they're much smaller. Nov 1st i go for my first brain MRI in 6 months. Im a positive cheerful person and a fierce warrior when it comes to my cancer. Learning all the ins and outs of new drugs etc.. as well as trying to learn the areas of my brain has been a bit challenging. Memory loss doesn't help with that!! I wish you ALL continued good health, and easy solutions when things arise.♡♡
  20. 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.
  21. Hi - I'm joining this forum to find out more about Adenocarcinoma and Women that never smoked. My mom was diagnosed on 11/29/2016. That day changed our lives. My mother fell and broke her femur and once we rushed her to ER the doctor reviewed her x-ray and said her femur should never break that way. From there he ordered a CAT scan which showed lesions on the femur. The next response from the doctor was it didn't start there, so he ordered an upper body scan which found it in her lung (source) however it was also in her spine, and ribs. Mom has had surgery since to repair the femur but recovery is not the only obstacle. The emotions of knowing you have cancer in so many places are overwhelming. In early December they determined she had it in her brain as well. They did WBRT for 10 sessions and she didn't have any side effects until a week after, where she lost her hair in one night and her scalp became very tender. Doctors recommended Aloe Vera and Aquaphor to soothe the skin. We just applied it yesterday so we're hoping it helps. Mom was informed that she does have the EGFR mutation which allows her to have the chemo pill rather than standard chemo. We're hoping the side effects won't be as extreme as traditional chemo. Has anyone taken Gilotrif and had positive (or not so extreme effects)? Can you give me some background or suggestions? Background on Mom: Mom is only 72. Thankfully, mom is a very strong woman she has pain but tries not to complain. She was semi-active before the fall and only noticed what she thought was arthritis pain or osteo pain from aging. She hasn't lost a pound she still has an appetite and after WBRT some of the cognitive thinking and some memory patterns returned, but depression keeps creeping in from time to time. I'm confused about a few things. I read a lot on this version of cancer and it's astonishing to me that one article stated it is now the #1 cancer for women. Why hadn't I heard of this before? Why aren't women warned? We're warned not to smoke but this cancer affects those that don't smoke. What kind of warning could people that don't smoke have received? I'm devastated that my mom is going through this. We have to keep our faith in God and sometimes we won't understand until later. Any suggestions about anything helps. Thanks for reading!!
  22. 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.
  23. 44 yr old man here. Former smoker. Diagnosed on 8/4/2016. Some spread into bones. ONC put me on Tarceva and after only 10 days showed visible results of a reduction. I'm generally looking to meet other Tarceva users and find out more. Thanks all...
  24. I am going to be setting up a booth to bring awareness and raise funds for Lung Cancer at local fairs and festivals. My booth will provide information, bandies and a donation bucket. I have acquired a small list of venues to set up my booth but would like to hear from everyone on any ideas they may have on any other settings to get our message out. I live in Mobile, AL. Thank you for any suggestions.
  25. My mother was diagnosed about 2 years ago with Stage IIIb / IV NSCLC (one site w/pleural effusion). The tumor is inoperable due to location (and no radiation option either). She tested positive for the EGFR mutation and has been on Tarceva (after chemo - Alimta, Carboplatin, Avastin) for just over one year. Now the cancer is growing, and they tested for the T790 mutation, likely to be present once resistance to Tarceva shows. However, not only did they find the EGFR and T790 mutations, but they now see the KRAS mutation, which is highly unusual. The KRAS and EGFR are considered to be mutually exclusive. I'm interested to know if anyone has encountered this? We're getting her into a study for the T790, but not certain about options to address the KRAS mutation.
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