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  4. Hi Susan. I’m three weeks post op from an Upper Right lobe lobectomy. I’m glad to hear you are doing well a year later. It gives me hope. The day after the surgery the hospital told me I had to walk a mile a day if I wanted to go home. I did that religiously while there. Since home I’ve been doing 30 minutes on the treadmill (it’s too cold to be outside) slowly increasing my walking speed and incline. I’m up to a mile and a quarter in 30 minutes on a slight incline. It’s a long way from a 7 minute mile but who cares. It’s more about how I feel afterwards, not how far or fast I went. One bonus to having lower lung capacity is that you can get your heart rate going with less effort. Higher heart rate equals more cardiovascular exercise, with less effort. That’s the math I’m using anyway. I’m not sure if you feel this way but when I exercise it is a pretty strong reminder of the fact that I had cancer and lost a part of my body because of it. That reminder stings. I’m hoping it lessens with time but I can imagine a lot of frustration comes with those reminders. I’m choosing to not focus on the why I’m not able to do what I use to and focus more on how much improvement I’m able to achieve now. I’m focused on recovering from the surgery and improving. I’m obsessed with the spirometer and getting as close to my preop lung capacity as possible. I hope I can keep up that perspective long term. I’d like to get back in a Montauk bike this summer Lungevity has some endurance events you may want to look into when you feel ready. https://lungevity.org/events/team-lungevity-endurance-events Its awesome you are interested in getting back into running. Go with how you feel during and after running, that’s what’s most important. Not how far or fast you go.
  5. Hi Susan Welcome to our group! I was a competitive rower before my diagnosis. I would wake up at 4:30am be on the lake by 5:45am to watch the sun rise & bald eagles eat breakfast. I rowed 10-12k in the am, ran 5k at lunch. My doc thinks in about a year I’ll be able to manage longer distances. I’m slowly working back to 2k. Persistance, perseverance & patience is my framework. I have learned to accept that I can not compare my split times to my pre-cancer diagnosis. I set a new baseline & work from there. Listen to your body- if you’re tired rest. From my perspective- a little bit of rowing is better than no rowing. As for the 5k run- bleh- never could get the runners high so I don’t miss that part. I think the key is to keep your legs strong. You might want to try the boring recumbent bike (we also have recumbent trikes we found on Craig’s list) Short intervals could also work for you. Try walking for 5 minutes & running for 2-3 minutes then build. There are lots of peeps who return to their sport after the LC diagnosis. You will too! Michelle
  6. Reposting: "I’m looking for a patient /advocate who is articulate and knowledgeable about Expanded Access also known as single patient IND requests, or formerly as “compassionate use”. A cancer-focused public workshop on EA (and the Reagan Udall Foundation EA Navigator system) is taking place here at FDA on May 16, 2019." Our colleagues at FDA are looking for patient panelists! If you fit the criteria above and are interested, please contact Rea at U.S. Food and Drug Administration Tel: 240-402-6506 [email protected]
  7. A year (almost to the day) since my right upper lobectomy and I finally discovered this site. I am grateful for early detection and diagnosis. My health is good, but there is one thing missing for me. I am a runner. Before my surgery, I loved the feeling of getting outside and running five or six miles before work. I have run five marathons and many other distance races. I want to love it again! Are there any other runners out there who can offer advice or encouragement? Thank you.
  8. Reposting: Patient and caregiver research for non small cell lung cancer (NSCLC). Stage 4. Non Mutations Find A Cure Panel specializes in patient research for rare and serious diseases and they have some upcoming research for people and caregivers of people with non small cell lung cancer (NSCLC). To qualify for this research, you or you loved one must have stage 4 NSCLC and NOT have any mutations (ALK, EGFR, ROS 1, etc.) and be dxd within the last 2 years. This research is very easy to participate in. It’s one confidential and anonymous 60 minute call call with one moderator talking about your experience. FACP gives you a 1-800 number and schedules the call at your convenience. If you are interested in participating, please contact FACP at [email protected] and reference NSCLC/lungevity.
  9. This is an Addario Foundation trial. Why not try contacting them directly? Here is the contact info: Kim Parham RN BSN Senior Manager Patient Navigation & Clinical Program Development 650-779-8286 (cell) 650-598-2857 ext 208 [email protected]
  10. Does anyone have any information on this study? Did anyone participate? It looks like it concluded in January. I’m very interested in the results. https://www.dana-farber.org/thoracic-lung-cancer-treatment-center/inherited-egfr-t790m-mutations/
  11. I’m not familiar with either trial. However there is a really good Lung Cancer Living Room by the Bonnie J Addario Foundation on YouTube that provides an overview of clinical trials & the strategy in development & selection. It’s about 2 hours & worthwhile. One of the survivors described herself as a clinical trial junkie having been through six. Keep us posted. Michelle
  12. Thanks Michele and Steff. We met with Dr. Valcheti at NYU Langone today and it seems poziotinib is not accepting patients who have had the carbo triplet, and TAK-788 is also not an option. Dr. V was pushing JNJ-372 (JNJ-61186372) (Phase 1) and we are also looking at the tarloxotinib trial in DC (Phase 2). If anyone know anything about either, please let me know.
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  14. Forum Members, Full disclosure, CIMAVAX was introduced to our forum in January 2018. The Cuban developed vaccine is in clinical trial at the Roswell Park Comprehensive Cancer Center. Here is their information about the trial, eligibility, and note the FAQ for availability now or travel to Cuba to get the vaccine. Stay the course. Tom
  15. How can lung cancer treatment affect a patient’s appetite? Why is weight loss an issue for people undergoing lung cancer treatment? What are some tips for lung cancer patients who are trying to gain or maintain weight? Learn the answers to these questions and more during the next LUNGevity Experts Twitter Chat on Wednesday, March 27, at 8:00 PM ET. We’ll be chatting with Tasha Feilke of Savor Health. Use #lcexperts to follow along or join the conversation on Twitter!
  16. Thanks for the update Golfman! Keep it up- only a few weeks away to tee-time!
  17. Hello, I'm sorry the triple combo hasn't been effective. It's hard in "mutant land" to know what the most effective treatment is given the options that are available (which is overall good news-the fact that there is more than one option). I'm an Alkie mutant and I can share with you what my doc's guidance has been when there's disease progression as it pertains to clinical trials and chemo. Our first option would be to exhaust the "nib" inhibitors then go to clinical trials with chemo as the last resort. The idea being that some of the clinical trials have breakthroughs where there could be access to more effective treatment faster. It doesn't mean that chemo won't work, just that the trial may offer a better alternative. I don't expect my doc to be on top of the clinical trials ( I don't see how they can with their work load). Right now for example there are over 200 ALK studies and a quick review of EGFR suggests there are over 900 clinical trials. Seems like that's too much to keep track of when the reality is 80% of clinical trials fail. So for my treatment plan, the doc would review the studies and make a recommendation based on my health status. A second opinion seems like a smart idea. Please keep us posted on what you decide. Michelle
  18. Thank you Rower Michelle for this recipe. This sounds wonderful. I will definitely try this.
  19. TwinkleStar, Firstly, I am sorry to hear about your mom. You are in good company here, there are lots of us who are looking for answers for our loved ones. Secondly, I don't recall seeing anyone using CIMAvax on these forums. Everyone here is using traditional lung cancer treatment methods. I'm not familiar with CIMAvax nor it's true effectiveness. I'd like to refer you to LUNGevity's Lung Cancer 101 webpage. Here you will find accurate information on your mom's lung cancer (once you know the type she has) and approved treatment options available. Take Care, Steff
  20. Beginning my second round of chemo today, with Tecentriq being the first injection. No results to share obviously, but wanted to post that the process is continuing. Really liked Rico's post. Maybe ther's hope after all. Keep the faith; golf season is on the horizon.
  21. Hello, I have the same question as Mike. My mom was diagnosed with lung cancer a week ago - they're still in the process of testing to determine her stage, but the doctor seems to think it's Stage IIIB or IV. She also has psoriatic arthritis. Has anyone in this forum taken CIMAvax with an autoimmune disease? If so, where in Cuba did you purchase it/doctor did you see, etc. And, how are you using it here. Thank you.
  22. Background: NSCLC EGFR Exon 20 insertion. Diagnosis was in April 2018, treatment was keytruda/alimta/carbo. First scan showed it was working very well. Dec. 2018 scan showed mixed results. The oncologist did not believe that the mixed results showed that the treatment was not working. There was some growth, but also a lot of reduced activity, so we continued on alimta/keytruda maintenance. Unfortunately, the March 2018 scan showed the disease progressing and the oncologist now agrees the treatment is no longer working. The oncologist is recommending taxol or a clinical trial. We have an appt at NYU Langone tomorrow to see if we can get into the poziotinib trial. I've been in touch with Marcia from the exon20 group and she's now given me some info on other trials like the TAK-788 trial at Sloan Kettering (which she believes is closed) and the Tarloxotinib trial that is about to begin at the Lombardi Cancer Center. We are also in the process of getting a second opinion from Sloan Kettering (we got our initial second opinion from Sloan in April 2018, but decided to not go with them because they missed the exon20 insertion diagnosis and as a result were not going to treat with immunotherapy - they apologized, but it was hard to pick them for treatment after that.) I'm just wondering when all this is said and done and we have information on all these trials, how do we choose the best course? Are people responding to poziotinib or is taxol the safer option? I'm a little bummed out because we did not get much direction from the oncologist. No one seems to have any definitive answers, or frankly, even recommendations. :o( The oncologist said that she would pick a clinical trial, then taxol, but it just seems so odd to me for her to say that given she did not know anything about the trials available. Wouldn't one have to research each trial in order to opine that one of them is better than the other (and/or taxol)? Or is she saying to go with any clinical trial we can because taxol is not likely to work? Any advice would be greatly appreciated.
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  24. Hello Fellow Warriors. So after meeting with my oncologist (who I love so far) and the brain MRI (which came back negative, thank God) I'm taking my stage 4 Squamous Cell Carcinoma to my first chemo treatment on Tuesday. I have been told that it will be Keytruda and Abraxane and will last about 4 hours. It seems to me that 4 hours is a long time. Is it? Needless to say I am scared of the treatment side effects but I want to kick this cancer's *ss so I in a weird way I am looking forward to it. I figure each treatment session is one session closer to getting healthier. I was wondering if anyone might have any advice to a chemo newbie. I know that we are all different and have different side effects to the drugs that are given. Any words of encouragement or ideas to make this not as bad as I am imagining would be greatly appreciated. Thank you all for this wonderful forum and good luck to everyone. Claudia
  25. Quick question: I was wondering if anyone had any experience to share with immuno or targeted therapy for SCLC. A few trials have shown efficacy of Keytruda and Opdivo in SCLC under certain circumstances. Previously, there hadn't been any signs of it working, so SCLC typically isn't even tested for genetic sequencing, protein expressions, etc. So, we're now in the process of getting the testing done for PDL1, TMB and genetic sequencing. Has anyone here taken Keytruda, Opdivo or anything else for SCLC? Any results to share? Experiences? Anything you can share would be very helpful.
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