Leaderboard

Ok, against all odds my ebus on the PET SUv Max 4, 1,3 cm hilar R lymph nodes came back negative (Thoracic surgeon was nearly certain I was going to be positive and stage 2a or worse). That followed my ct that showed my SPN in lung declining in size from 7.2mm to 6mm in 45 days on its own (in volume terms that is a significant 42% deciline).. But I know every time I think I am ok, some bad report comes my way so I am still fearful. Will follow with another CT in 45 days. In the interim, I still feel like my ride side is sore from my neck to my lung and cant help but be reminded of my problem each day. Draining on me. We watch and wait. But I will take that over confirmed cancer any day..

Rstrickland, The most complete yet layman readable resource I've read is the book: "The Emperor of All Maladies". Covers all you asked about and more. Stay the course. Tom

Suzanne Sry I didn't see this post sooner. For some reason I don't always get notifications on my phone even for people I'm following like you. I certainly do know about SBRT for stage IV lung cancer. I just had my second SBRT treatment yesterday. And I'm thrilled to have the opportunity to have this treatment. From all I've read this has better outcomes than either chemo alone or chemo/radiation concurrently. I'm scheduled for 5 total treatments. So 3 more to go and so far I've had no troublesome side effects. I have 1 nodule in my left lung and 2 in my right lung. They are treating all 3 each session. Had standard radiation for breast cancer last year. The difference as far as the experience goes is that standard radiation was 5 days a week for 6 1/2 weeks and the sessions themselves only lasted a couple of minutes each time. With the SBRT I only go twice a week for 5 total sessions, but they are much longer. Took about an hour and forty five minutes for the first one because they were still working on lining up perfectly. Yesterday took an hour or so. The only difficulty is having to lay absolutely still with my arms over my head the entire time. But no big deal. It's not like I'm in terrible pain or anything. And, in my opinion and also that of my Medical Oncologist, this is my best chance of good results long term. I've written all about the process of getting to finally have this treatment and how it's going in other places on here. Let us know what you decide. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Good morning all, My brother was diagnosed with cancer last week right after Christmas. He is a 48 year old healthy, strong man who never smoked or drank, but took care of his body and ate healthy. In Oct. 2016, while at the gym, he thought he hurt his shoulder while lifting weights. He had muscle pain so he went to the doctor and was prescribed pain medicine and physical therapy. He did all of that and it didn't work. Then the pain started to run down his spine and lower back and all around his neck. He went to the doctor again and they prescribed stronger pain medication and it also didn't work. He then insisted that his doctor do an MRI. The doctor then called my brother on the phone Dec. 28th and told him it looked like cancer. Dec. 29th went to the oncologist and on Dec. 30th he did a MRI and PET. On Jan. 3, oncologist confirmed it was cancer and metastasized to his bones and specifically his spine. That's what was causing the pain. We checked him into the hospital to get the process started immediately and that day they did a full body MRI and MRI of the brain. That very same night they told us that it had spread to his brain and all along his spine. On Jan. 4, they did the biopsy of the lung tumor which is about the size of a quarter. Yesterday we found out it was non small adenocarcinoma of the lung stage 4 and it's very aggressive. They sent off a sample to see if there is any mutation. Today we received news that it has spread to his liver and they will begin target radiation on the tumor in his spine on Monday so he could at least walk without pain. He has never had any medical problems and he was fine last month and now he's in a hospital and the doctors are saying that his days are numbered. This has been the hardest news ever but if anyone out there could give us some hope, we would greatly appreciate it. I know we can fight this horrible disease. I will update and let everyone know of the treatments and hope there could be wise counsel for us since this disease doesn't run in our family. Thank you.

Hey there! My appt. with surgeon was moved up to this Thursday May 4th. At first I was really glad. But today is a different story. I can feel the anxiety & reality in the fact I have lung cancer. I am upset- now wondering if surgery or treatment is even worth it. I have watched several family members go through surgery & treatments for various types of cancer. My husband passed away almost 9 years ago from lung cancer. He had radiation & chemo right up until the end. Quality of life was poor. My mother & grandfather both died from colon cancer. My Mom lived 2 weeks after diagnosis & my grandfather 6 months after diagnosis. I have had 2 cousins with breast cancer. they are doing well. I guess I am just a bundle of nerves right now. I am not sure of what I want to do. Just thought I would vent & put my feelings out there. thanks for listening to my rambling.

Hi, This is my second time to post here. The first thread I started did not generate as much response, probably because my mom's case is a bit unique. Ok to back track a bit. I'm the primary caregiver of my mom who was diagnosed with Stage 4 NSCLC on March 3rd. She had pleural effusion on her left lung that needed to be drained. The fluid that was removed was sent for testing and came back positive for adenocarcinoma. More testing was done and about a month later the results came back positive for an egfr mutation that made my mom a good candidate for Tarceva. She started taking it on April 13th. We're a bit anxious about the side effects because my mom, who is 78, is suffering from a host of other medical issues. She has end stage renal disease dialyzing 3 times a week, is a diabetic, hypertensive, and anemic. I was hoping that there's someone in this forum who is in a similar sutuation as her who could share his/her experiences with us, but so far no such luck has come to us. This time I'm hoping I could get replies from forum members who are taking Tarceva on how they coped with the side effects. I would like to know what they did to relieve themselves of this dry cough and scratchy throat that's been my mom's main complaint so far. I know the side effects vary from person to person but I'm curious if NSCLC sufferers have general similarities in their side effects from this targeted therapy. Also, does Tarceva have a life span when it comes to efficacy? I have so many other questions because this is the first time someone in the family was diagnosed with this disease, but right now getting answers is more important. Thank you so much for taking time to read my post.

I hear about the stage of lung cancer but dont understand if there is a grade to it or just under nsclc adenocarcinoma stage 3a... I had a sarcoma cancer biopsy from my leg 5 years ago and it was a high grade tumour which was treated with 5 weeks of radiotherepy and 2 surgeries ...ive never thought to ask the oncologist this question ... Sent from my SM-N920I using Tapatalk

Dear Mommy's girl, Sorry for your mom's illness. Here is a link on reviews that may cheer you up. https://www.drugs.com/comments/erlotinib/tarceva.html

Here is the weekly clip report: MONDAY, MAY 8 Medical Xpress “Study Identifies New Target to Fight Prostate, Lung Cancer” https://medicalxpress.com/news/2017-05-prostate-lung-cancer.html WTIU-FM (Indiana Public Media) “New Study To Examine Why Patients Choose Lung Cancer Screenings” http://indianapublicmedia.org/news/study-examine-patients-choose-lung-cancer-screenings-119528/ Cancer Network “Checkpoint Inhibitors Improve Response to Salvage Chemotherapy in NSCLC” http://www.cancernetwork.com/lung-cancer/checkpoint-inhibitors-improve-response-salvage-chemotherapy-nsclc TUESDAY, MAY 9 US News & World Report “Here’s How to Manage Lung Cancer Side Effects” http://health.usnews.com/health-care/patient-advice/articles/2017-05-09/heres-how-to-manage-lung-cancer-side-effects New York Post “How Assembling the Right Cancer Team May Save Your Life” http://nypost.com/2017/05/09/how-assembling-the-right-cancer-team-may-save-your-life/ WEDNESDAY, MAY 10 WETA-TV (PBS—Washington, DC) “This Cuban Lung Cancer Drug Is Giving Some U.S. Patients Hope” http://www.pbs.org/newshour/bb/cuban-lung-cancer-drug-giving-u-s-patients-hope/ Cure “Will Immunotherapy Move into All Lung Cancer Patient Populations?” http://www.curetoday.com/articles/will-immunotherapy-move-into-all-lung-cancer-patient-populations THURSDAY, MAY 11 Lung Cancer News Today “Clinical Trial to Test Biocept’s Target Selector Platform as Diagnosis, Monitoring Tool for Lung Cancer” https://lungcancernewstoday.com/2017/05/11/lung-cancer-platform-target-selector-developed-biocept-undergo-clinical-trial/ Reuters “U.S. FDA Approves Merck Immunotherapy/Chemo Combo for Lung Cancer” http://www.reuters.com/article/us-merck-co-lungcancer-idUSKBN1862Y2 FRIDAY, MAY 12 Fortune “Why Merck’s Keytruda Just Became a Lung Cancer Game Changer” http://fortune.com/2017/05/11/fda-lung-cancer-merck-keytruda/ Cancer Therapy Advisor “Alectinib Beats Crizotinib in ALK-positive Non-small Cell Lung Cancer” http://www.cancertherapyadvisor.com/lung-cancer/lung-cancer-nsclc-alectinib-crizotinib-compare-treatment/article/661354/ Eurek Alert “Invasive Lung Cancer Cells Display Symbiosis -- Key to metastasis” https://www.eurekalert.org/pub_releases/2017-05/ehs-ilc050917.php Reuters “AstraZeneca’s Durvalumab Shown in Trial to Reduce Risk of Death from Lung Cancer” http://www.reuters.com/article/astrazeneca-cancer-idUSFWN1IE06Z

Hi, Butterfly, Welcome to LCSC. I'm glad that you've already connected with Susan. She is a great resource! Please let us know if you have any other questions or would like more information/resources about lung cancer. With gratitude, Lauren -- Lauren Humphries Digital Community Manager LUNGevity Foundation

Hi, Lisa, Just wanted to check in and see how you're doing. Please let us know if we can help you find any information/resources specific to your diagnosis or if you'd like more information about LUNGevity's support and survivorship programs. Hope to hear from you soon! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Kaly, Welcome to LCSC. We hope to hear from you again soon with an update on how you and your brother are doing. I know the distance must be very difficult. He is fortunate to have people who love him all over the world. Please let us know if you have questions or would like resources/information on a particular topic. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation

Hi, Juanita! We are so glad to have you on LCSC! Thank you for being an incredible advocate and sharing your story to inspire people living with lung cancer to keep following their dreams. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation

Hi Julie! How are you doing? Thinking of you, KatieB

HI Kaly, How is your brother doing? how are you holding up? I know it must be hard being so far away from your brother right now. We continue to be here for you. Post an update when you can. Best hopes, KatieB

Kaly, Sorry, I miss-read your post and thought you mentioned adenocarcinoma. I clearly see the squamous cell you mentioned. It is a good thing your brother has family attending his consultations. This was very important to me because I was so afraid, I didn't ask any questions of the doctor. My wife did the Q&A. I have squamous cell NSCLC also and am excited about immunotherapy treatments that are starting to show results for squamous cell patients. Here is some information to pass along to your brother if necessary. I hoping for a good result after his 6 cycles are complete. Stay the course. Tom

Hi Tom, Thank you for the response, it really means alot to me . My brother was diagnosed squamous cell carcinoma not adenocarcinoma. My brother is in India and I am in USA so I can't accompany him for doctor visit however My other brother goes along with him. Today he got 5th cycle of chemo and onc advised to complete 6 cycles of carboplatin and taxol and see . Thanks Kaly

Kaly, Welcome here. So very sorry, I missed promptly responding to your introductory post. Ok, understand stage IV adenocarcinoma and going through first line standard of care - chemotherapy -- taxol and carboplatin. Also understand his tumor did not display markers suitable for targeted therapy and his mid-treatment scan showed mixed results. So, here is my thinking. If the primary and some lymph nodes are shrinking, chemo must be having an effect. During my mid treatment scans, some tumors were larger and some were smaller. However, after each completed chemo treatment (in my case 6 cycles), the end of treatment showed no evidence of disease. I think your brother's oncologist will stay with his treatment plan and assess on completion. There are further treatment options if this course does not completely eliminate the cancer. Some that come to mind is a change in chemo recipe and/or perhaps stereotactic body radiation therapy to address uncooperative lymph nodes. The important point is to let your brother know that many of us here have been exactly where he is now -- in treatment with mixed mid-treatment scan results. And, we are still here. Lung cancer is so dangerous because it is persistent. Here is information on persistence and how to deal with. I use an American baseball analogy but have watched many cricket matches and the games are similar. The point is to settle in for the long game and cricket is certainly a long game. Are you accompanying your brother to his oncology consultations? If you are, you may want to read into the disease. Here is a good start to your reading. And, here is information in the form of a check list to help you prepare for his next consultation. You'll likely have more questions and this is a good place to ask. Stay the course. Tom

Welcome Lisa. Glad you found us. You just started treatment 2 days ago! When I was diagnosed they were not testing for those details but we do have somethings in common. I live here in Minnesota. I was 50 years old when I was diagnosed with Stage 3B NSCLC. I hope you will also have the fact in 20 years from now that you are still alive to talk with us. Please keep us posted. Donna G

I really appreciate the time each of you have taken to respond to me. It really makes me and my family feel like we are not alone. We received a little update on the treatment that my brother will be begin to receive. Starting tomorrow, 1/8/17, they will begin target radiation on the area of his spine where he is feeling the most pain. They will be doing it Monday through Friday, have him rest for the weekend, and then five more days. So it will be 10 days total of radiation on the specific areas in his spine. The oncologist expedited the biopsy results and said that we will have some news hopefully on Thursday. My brother has been in the hospital since Tuesday last week (1/3/17) and his vitals have been great. Hopefully he will be discharged tomorrow after his first target radiation. It's been very hard for him and we all have been very strong for him. We have shared with him stories of survivors who had the same prognosis as him and it has given him a different outlook. Today, a nurse who had stage IV cancer but beat the odds, came to visit him and gave him a few words of encouragement. He has his ups and downs, but the uncertainty is the most feared. If anyone has any advice on what else will help him, please let me know. Thank you.

Thank you for your response. Yes they said they will start chemo this coming week everyday. But we are hopeful that the other results of the biopsy comes out with a more specific treatment for the cancer in the different areas. After every test it seems like bad news after bad news. It's hard to keep someone optimistic in the midst of negativity. Of course we can see the reality of the situation, but what frustrates me the most is how a doctor can say "his days are numbered" and hasn't even STARTED a treatment. Anyway, we will be praying and patiently waiting for the results.