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Okay, your surgery is scheduled. This post is meant to provide you with information and tips to prepare for thoracic surgery, what to do in the hospital, and when you return home. I’m hoping that the information here will alleviate some of your anxiety and fears. You can do this; you will get through it! Be open to the support of family and friends as well as the folks here at Lungevity. We are here for you. Pre-Surgery o Eat healthily, get sleep, and also do some physical activity. It might just be walking, but the better your body works before surgery, the more quickly it can recover post-surgery. o Make sure you have someone to count on for your first few days at home. You'll be tired and likely in some discomfort, so having someone there to assist you when you need it can be a real help. If you live alone and have Medicare, you can ask your doctor for a home nurse to visit, check on your progress, and change dressings. In-home care also lets you ask questions about your recovery. o Get a wedge pillow. It will allow you to sleep in a more comfortable position, take the pressure off your back, and improve your ability to breathe comfortably. You may also want to keep a small pillow available to press against your body's surgery side when you cough. o Arrange the nightstand with things you may need, so you have them within easy reach. Remember stretching is something to avoid after surgery. o Make sure to fill your pain prescriptions and take them as recommended. Once you’re home, you'll need to be active, and it is harder to do to if you’re in pain. The meds are not a "forever thing," but are necessary to keep you comfortable enough to recover faster. o Have the numbers of your doctors readily available to call if you have questions or experience symptoms that concern you. o Pack your “hospital bag” bringing only the things you’ll need. Remember, a thoracic procedure requires a post-surgical stay of a few days before being discharged. In the Hospital o Show up on time. o On the day of surgery, after the surgery takes place, they will likely have you sit up, stand, or even have you walk to a chair to sit for a bit. It is important to get you moving and exercise your lungs. Remember the surgeon likely gave you a pain block, so it’s unlikely you’ll feel pain. o You should be given a Spirometer (if not, ask for one). Use it often; it will help to keep your lungs clear and rebuild lung capacity. o TAKE YOUR PAIN MEDS AS INSTRUCTED. The pain block will wear off within 12-20 hours after surgery, and without the additional pain meds, you will get uncomfortable quickly, so please take the pain meds as prescribed. o The day after surgery, you, your IV’s and chest tube/pump will go for a walk around the ward. Do not be an overachiever; do what is required and practice slow deep breathing when exercising. o If you miss bathing, the nurse can provide towelettes as a substitute. o Once you are stable, if your lung is not leaking air, and your body is properly absorbing post-surgery fluids, you’ll be set up for discharge. They’ll remove the chest tube, IV’s, and other paraphernalia they’ve attached, and you’ll be ready to go home. Home Post-Surgery o Have a plan to exercise. It should be walking; at first around your house and later outside (sunshine and fresh air are excellent tonics). But take it easy--this is not a sprint but a long race that you will win with each increasing step over time. o Continue to use your spirometer; it is your best friend for increasing lung strength and function. o You will be sent you home with pain meds. Take them as prescribed until pain is diminished. Pain restricts exercise and prolongs healing. o REST WHEN YOU FEEL TIRED. Sorry for the caps, but this is important. You've had major surgery and need time to heal, adjust to changes, and adapt to old activities. Be kind to yourself and give yourself grace until you’re strong enough to manage your new normal. o If you have any symptoms that concern you contact your doctor asap. For example, some people may hear/feel gurgling when breathing while it may be nothing it might be a condition (subcutaneous emphysema) that your doctor should be aware of. It can often resolve on its own, but keeping the doctor updated is a wise choice. o When you're feeling up to it, update us on our forum. Let us know how you're doing and ask any questions. We're here for you! Recovery differs for everyone; in my case it was about 6 weeks before I was almost back to routine activities after my Lobectomy. Please stop into the forum if you have questions. A good group of people will be there for you.

"1. Stable posttreatment changes in right lower lung. 2. No adenopathy or recurrent disease.
" I had two fabulous weeks in Italy, now a report of no recurrent disease. What else matters? Brain check-up next month. Hope you're all having some nice moments in your days. Karen

These definitions were provided by a general medical oncologist who treats most forms of cancer. He cautions that although the terms have distinct meanings, there is overlap. Cure. Should be reserved for specific diseases where recurrences happen quickly and one can safely say there is a cure. Not useful for diseases like most cancers where recurrences can occur up to 5-10-20 years later. Mostly applies to non-melanoma skin cancers. Commonly used by surgeons who don't follow the patient long-term and want the patient to feel good about the surgery. But this pronouncement can be VERY misleading as I have had patients without followup because the surgeon said: "I was cured,” and then suffered a recurrence. I use it with qualifiers, such as "about 95-percent chance of a cure" if someone is still free of disease at 5 or 10 years in concert with statistical predictions. 5-year survivor. This term is mostly used to describe patients if still free of disease at that time, and often implies a reasonable chance of a cure. Most commonly used term now and has supplanted the use of term "cure". No evidence of disease (NED). Describes how things are at a specific time, such as after scan, surgery, re-staging workup, after chemo, or XRT [radiation therapy]. This is a point-specific-term, and is good, but does not guarantee anything long-term. Remission. Similar to NED, but usually used after someone has had disease treated by XRT or chemotherapy and not just surgery but is a general term. It IMPLIES a complete remission but not always. The disease has disappeared at least for awhile, to exam or testing. Several sub classes of remission: Partial remission (PR) meaning at least 50% reduction in the bulk or evidence of the cancer, usually measured by size in mm or cm. Minor remission or minor regression suggesting the same but at least 25% reduction in size/bulk of the cancer and a less useful term. Complete remission (CR) meaning all evidence of cancer gone after some treatment. Once again, usually after XRT or chemotherapy, but not surgery (surgeons usually just say, "I got it all”). Complete pathologic remission (CPR) (also called complete pathologic response) usually implies that the patient received chemo or XRT PRIOR to surgery (neoadjuvant therapy) to reduce the size of the cancer prior to surgery, and in the final surgical specimen NO cancer was found pathologically. Often used for breast cancer patients. Partial pathologic remission like CPR but with a poorer outcome. Implies the cancer is sensitive to the treatment but not 100-percent, and often implies need for more therapy after the surgery. Stable. Implies the disease has not grown nor appreciably shrunk (due to variance in measurements, this often suggests a single change +/- 10%), and then the trend in change is the most important determinant. Used to be considered a reason to change therapy, but in some diseases may imply continued survival benefit, and thus no need to change therapy. Progression. This is the worst outcome suggesting significant growth or continued trend in growth and implies need to change therapy. If no therapy, then "Best Supportive Care" (BSC) like Hospice or comfort measures. There are three other terms used for surgery results: R0, R1, and R2. These describe visual and pathologic review of the resected cancer specimen. R0 implies all cancer removed. No obvious visually or microscopically identified cancer seen. This is the best result after surgery. R1 implies no visual cancer seen, but microscopically tumor can be seen at the margin of resection and suggests some tumor left behind. Likely needs additional resection, or if not feasible, XRT or chemotherapy afterwards to treat the area. R2 implies visual tumor left (macroscopic) and means the same as R1 but a less successful outcome ("I had to leave some tumor behind, it was attached to an artery or major vein, etc").

Hello to The Durva Club- I wanted to pass this information along to you- On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event. I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks. “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience. He wasn’t a positive see the bright side of life type of Doctor. Shame on him!! Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s). It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome. Too much of “good thing” is bad for you. those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva. In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. You guys inspire me! Michelle

I had my end of chemo scans done yesterday and was getting the results next Wednesday but went to my gp to get some scripts and he had a copy of my results so IM CANCER FREE ....i was so happy i was crying walking around the supermarket trying to text my kids through watery eyes ... Sent from my SM-N920I using Tapatalk

Hello everyone I finally created an account lol. I'm a 2 1/2 year lung cancer survivor and THERE IS HOPE!!! I've been a part of LUNGevity since my lung cancer journey began and it's a great organization. I was diagnosed November 20, 2014 with stage 3B NSCLC adenocarcinoma ALK +, I stood positive, held on to the word of God and fought a brave fight and won!! It wasn't easy but it is POSSIBLE through the word of God! I was on Dr. Phil and shared my story, I've traveled and shared my story, I'm a lung cancer advocate and now I'm an owner of my very own crossfit gym. So remember my lung cancer brothers and sisters there is HOPE!! DON'T EVER GIVE UP!! No matter what they tell you!! Sent from my SAMSUNG-SM-G935A using Tapatalk

Hi All You Bad *ss Cancer Warriors, I am sharing some great news for stage IV and all others struggling with this awful journey. After 4 years of chemotherapy, immunotherapy, radiation and finally a lobectomy I am now done with my cancer treatment. I’ve had 2 years of clean scans and had my last immunotherapy treatment last week. Today my oncologist set me free sort of. I’m one of his few lucky stage IV lung cancer patients who is NED after 4 years of treatment. I will be scanned “ad nausea” (his words) going between PET & CT scans. I’m VERY nervous being off treatment but hey, I’m alive, NED and going to Las Vegas to celebrate. NEVER GIVE UP! If it can happen to me it can happen to you. Wishing everyone great scans and happy holidays. Claudia

Hi everyone Hope everyone is doing well, just wanted to let you all know I haven't had any further problems with seizure activity since going back on the dexamethasone even though it's the reduced amount so thats good news,I have a body CT SCAN on Monday and an appointment on 27th October for results of the test but they told me there is a problem with radiologists at the moment so expect a couple weeks delay so unfortunately going to be a long wait lol, All the best Justin

Hi Karyn, I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing. The prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person. I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. I'm glad you found us, Karyn.

Hi everyone, I got the results from last weeks CT scan and it's all good news thankfully, there is no spreading to anywhere else and the tumor has shrunk a bit more so classed as stable,there is scaring on the lung from the radiation but they are really pleased with everything so just the mri scan next month to see if all is good in my brain and hopefully get on with my life, All the best Justin

Hi Justin, Here are some suggestions: 1. Stop reading those damned internet statistics (this is not the first time you've heard this suggestion, right?).You know they're out of date. 2. Instead, listen to this: The Median isn't the Message, by Stephen J Gould. He was a scientist and a cancer survivor who understood what statistics can and can't tell us. 3. Get a grip and start enjoying your family! Lou is right on this! Stop wasting your one rare and precious life in fear. You'll be doing your family as well as yourself a big favor. 4. If you haven't already, consider cancer counseling and/or see if antidepressants are appropriate for you- I've found both of these helpful.5. 5. Know that we're here for you and vent and rant all you need to! Most, if not on his forum all, have been in the throes of hopelessness at times. Some have passed on. Those of us that are still posting are stlll here! This is proof that HOPE makes sense. My lung cancer was an early stage. However, lung cancer is my third primary cancer. My second was a rare and aggressive stage 3 gynecologic cancer with a "dismal" (my doc's word) prognosis. I continued with aggressive treatment and I've been NED for over 10 years. There were no guarantees for me, but I'm still kicking. Hang in there, Justin. You can do this!

I was diagnosed in Feb 2019. Had a brain MET and some nodes in the lining of my right lung. It happened very fast. One day I'm shoveling snow and feeling good, next day I'm wondering what the heck happened and my life changed. I experienced shortness of breath, so they did scans and a thoracentesis (draining fluid from my chest), a biopsy, then they gave me the news. SCLC. They immediately put me on chemo with carboplatin, etoposide and tecentriq, which was recently approved for first line treatment. They found that I was allergic to etoposide, so they substituted paxlitaxel, and I still have weekly infusions of it to this day. One of my doctors suggested whole brain radiation in May, but we refused. Then the brain MET disappeared, which I think was due to tecentriq, but no one knows for sure. Only God knows. It's gone. For now. Paxlitaxel side effects are not pleasant, but I can still play some golf. I'm now a frequent flier at the cancer center and still not an expert on this disease. There are so many things going on now in research that I could never keep fully up to date. I rely on my medical team to be the experts, to be up to date on SCLC and to do their thing exceptionally well. I ask tons of questions and still make the final medical decisions. But I think the most important aspect of this disease is attitude! Positive or negative, that's the only thing I can control. I see some patients who are so depressed they make me feel depressed. That's not a good way to go through this thing. I've experienced this depression and can say that it's really ugly. I've even heard that negative attitude can affect not just the patient but also the disease. So I'm in charge of my attitude and rely on the help of family and friends to keep me positive. Avoid negative crap always. So that's the extent of my SCLC experience. I suggest that patients and supporters stay focused on positive attitude. Do whatever is necessary to keep your wife's attitude positive. That's a very, very tough task, maybe even tougher than the treatment of this disease.

Barb ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track. Sillycat .. you may find this interesting https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/ I got #14 today, blood work all good ,most fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights CT says I'm still NED!! enjoy the season

Tom Is that valid at Wallmart for discount. lol I would like to take this opportunity to thank Imfinzi for supplying me the drug and clinic at no charge. I never thought this thread would become so popular this last year thanks to the people on this forum who contributed and all those that viewed over this time. Special thanks to Kleo who was a great support in the beginning of this journey and alas had to stop the drug.I believe it was because she did not receive the Durvalumab goody bag.😎 Thank you Kleo and all the best on your new path. Going forward thanks to everyone and it is my hope we all can benefit from this drug in the coming months and years. Going to take a break now and will update on my future scans ,The word is it could take up to eight weeks for the side effects of the drug to wear off. Bob

All my Durva friends are doing so good! Yay! I may not be taking the durva anymore but I still get to hang out here cause I had some....right? 😁 So I'm only at half way thru this chemo/immuno thing they are doing. Had to stop and do some tests on my digestive stuff because it's actin up. If it aint one thing, it's another. My onc is a lovely Indian lady....love her. But holy COW does she talk fast. And that accent....I usually just kinda nod at her. LOL This last time she was doing the exam and she kept saying...your balls are full. Said it 2 or 3 times...your balls are really full. I piped up...I don't have BALLS silly. She said no no...your balls...they are full. I just kinda stared at her funny...said ok...and went on my way. Got home and thought...do you think she was saying BOWELS? 🤣🤣

Hello- welcome to your new family. I’m one of those Stage IV healthy people. It’s more common than any of us could have ever imagined. You might want to check out Diana Lindsay’s “Something more than Hope”. She shares her survival story as an EGFR mutant which is so inspiring. Stephen J Gould wrote a very powerful essay- The Mean Isn’t the Message. It’s so on point! The internet is a scary place & the data points do not account or reflect the recent advances in LC treatment Another terrific resource is Anti-Cancer Living. Lots of great information in there too. In addition, Facebook has some great support for EGFR & the Exon 20. Knowledge is power & hope is the driver on this road. There’s so much hope on the horizon with all these clinical trials. Stay strong. We’re here for you! Michelle

This will be long so sit back relax and say I CAN DO THIS: 1. Had a long talk with the lord of course one sided, he choose not to speak. I explained that this cancer thing was alot bigger than I could handle and ask him to handle it. Said Lord, I know if I die that I will wake up and be in heaven and attend a real big family reuinon and I thought that was great. If I wake up here thats OK too. I have my wife, family, friends, my horses, dogs, cats, and maybe I can help someone else so you handle this. My promise to him was I would always talk to someone everyday about the lord, someone everyday about their cancer (not mine), and I would encourage people to quit smoking like me(3 weeks before I was told I had cancer). Well a friend gave me a coin with a cross on one side and the prayer from Mark on the other that said: With God ALL THINGS ARE POSSIBLE. Well I carried this coin in my pocket at all times and when I was scared, nervous, or unsure I would rub that coin between my fingers until I remembered that my faith was stronger than the cancer.Today I buy those coins by the box and pass one out everytime I go somewhere. Especially when I go and visit at oncology ward. 2. I had to realize that I wasnt punished just bad luck. I went to the hospital for radiation and chemo and I would sit in the lobby at Brook Army Medical Center and watch people come in without legs, arms, young kids from Iraq with their faces nose, ears burnt off. And I mean off. They are 19 and 20 and will walk the rest of their life with these marks. Hm can you see my cancer. Nope. So I would make it a habit to sit and talk with them over lunch and let them know that its whats inside that counts and again, the lord will take care of them. 3. Well after my pity thing was over I began to start a new life, a life with cancer living inside of me. Now you have a choice here: Let the cancer control your life or you control the cancers life. By now you know what I did.. 4. Now here is the plain facts and its so simple. I raise horses and cattle and I remembered a old saying of mine. Have you ever seen a fat cow die. NOPE. The skinny ones do all the time. So here I am with a fried throat from radiation and cant eat and the doc's want to put a tube in my belly. Hm, again not a chance that this is going to happen so for 4 1/2 months while I couldnt eat solid food I drank 4-5 ice cream shakes a day, bowls and bowls of ice cream, Nestle's milks of banana's, vanilla, 3-4 cans of boost and I went from 165 to 210 during that 4 months. Also and here is a biggie hint, I ate a half watermelon everyday. Has that old vitamin (Lycopene) that doc's are now figuring out that helps fight cancer. Gave me the water I needed also and is a natural stool softner for me and I love ice cream and watermelon so seemed like a wise idea to me. LOL. Boost has many many vitamins in it so that really helps. Now while I am talking about vitamins I asked my onc, if I take vitamins during chemo can you for sure tell me that the vitamins will not help to heal cancer cells like it does good cells. He said and I quote, no, I cant tell you for sure that it will not help cancer cells to come back. Well, Boost is made to help your system with vitamins so that is all I used. After chemo stopped yes then I went on to a multi-vitamin called Miracle 2000 wich just seem to have a good balance but also had high seleium which is good to fight cancer cells. Got it at GNC. During chemo you do not want to eat thin skin fruit. Like apples, grapes, and such. The dirt and pesticides can lay under the skin so if you have to eat them make sure they are cooked. Eat lots of bananas, cantalope, watermelon and thick skinned fruit. All meat should be well done and please eat more fish than red meat. When your counts are down from chemo you can get any infection there is and then some. After I could eat I had plenty of cottage cheese with green olives. Lots of salads, veggies, carrots, and made up for 53 years of not eating veggies LOL my mom loved it. 5. Drink one gallon of water everyt day. Each time you drink a glass think to yourself I am washing my cancer away. I am washing my cancer away. Positive mind picks up where the oncs leave off. I told myself that Cancer was a temporary inconvience and I believed it. 6. Lots and lots of green tea. Hot with orange blossom honey in it. Very tasty. Would drop a peppermint or spearmint candy in it now and then. At night I couldnt sleep like most of you so I would have a big cup of sleepy time tea then take my sleeping pill. Well after awhile you condition your body to go hmmmm sleepy time tea , lights out. Got off the sleeping pills that way. Condition your mind and body to work for you not the cancer. They also have a Lipton Green Tea out now. Its a cold drink that has citrus in it and is very tasty. Remember Green Tea, GOOD. 7. Your body heals best when you sleep so sleep away. I would get up in the morning so I could go lay on sofa and take a nap. Buy a big screen TV and rent lots and lots of movies. Take care of yourself, make yourself the number one priority in your life for a change. When you get better you can pick up where you left off or maybe change your life altogether. 8. A pet is always a good caregiver. Will lay with you and give you something in your heart that will comfort you 24/7. 9. Walking. When you can force yourself to walk and help them muscles. My wife and I would walk miles and miles when I could get up. Better to throw up outside than in the house anyway. By the way, after all this I am not on oxygen either and I believe its cause I walked alot even when it hurt. Well in closing this is not a commercial, ad or a must do. This is what I did cause I wanted too. I might die from a truck, a horse bucking me off, maybe a heart attack but I WILL NOT DIE FROM CANCER. Take care and God Bless, Don Feel free to ask me a question but ask it here where everyone can read it.

Update: I have received nine tri-weekly infusions (paxel / Carbo), and my scan results have revealed no evidence of disease! I am now on a monthly physical exam. My Oncologist says that I could remain clear for months or years. My prayers are for all of us to beat this horrific disease.

Here is a list of commonly used acronyms that are found throughout this site. I am SURE I missed a lot so I hope that as others come across more they will add them to this tread. Warmly Christine lc, lung cancer sclc, small cell lung cancer nsclc, non small cell lung cancer SOB, shortness of breath NED, no evidence of disease Dx or dx diagnosis Tx or tx treatment B-I-L, M-I-L, F-I-L, S-I-L, Brother, mother, father, or sister in-law SO significant other DH dear hubby ONC, oncologist PCP primary care physician METS, metastasis VATS, video assisted thoracoscopic surgery WBR, whole brain radiation SUV, "standardized uptake value," which is based on the amount of metabolic activity resulting from the pre-scan injection of irradiated sugar

Hello All... I thought I'd visit this really quiet support forum. I don't see questions coming from new Durva people or anyone telling us how their infusions are going and if they are having any side effects or questions. How is your blood work, fatigue? Are you having your TSH checked? Mine went up to 139 with no one testing, normal is .3 to 5 mU/L. Get your Pd-L1 checked too. I want to share my good news with my fellow travelers. Today is my 5 year canceranniversary. After all the tests I was diagnosed with Stage 3a lung cancer. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo. I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and lucky me after that I got to take Durva. I have been in remission for 3 years now. I want people to know there is hope and Durva does work for many. Stay safe. old joke ....My aunt’s star sign was cancer, pretty ironic how she died. – She was eaten by a giant crab

Happy Friday to All, February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕 Questions I had for Oncologist 1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero. R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators: Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 2) What now? R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months. I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. Thank you everyone for your support. Take care, DFK

Katum31, Hi and welcome. So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis. I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence. Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now). My mom was also a late-stage diagnosis. Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects. Here is what I can tell you about my experiences, maybe it will help a bit. Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it. The major side effect was tiredness. My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer. She's only in her 30's, but all she experienced was some tiredness. Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer). She was in intolerable pain from the bone mets. After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects. She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point. Luckily, non small cell lung cancer is not as aggressive. Chemo - my mom has gone through 2 different bouts of chemo. The first time she did great, the second time, not so great. One major determinant of chemo effects is the type(s) that your mom will be getting. Do you know what chemo(s) she will be getting yet? I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be. With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started. But my mom is a VERY strong person. She pulls through all of these health issues like a warrior. I am happy to hear that your mom is a warrior too. The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge. It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get. There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap. My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there. Also, reach out to us. There are so many survivors here that can likely answer just about any question you have. We are here for you. You are not alone. And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY. Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do. Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what. Take care, Steff

Hi there, and welcome. I'm sorry about your mom's diagnosis. Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it. It's great that she came through the brain surgery so well. We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope. Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with. But the others will be along soon. Glad you found us--this is a great place for information and support.

Isn't the shirt great? Got lots of smiles from my fellow baldies at the oncology center.

Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com You are not alone. xoxo Linnea

It has been quiet here. I check in daily, and hope the quiet spell is because everyone is busy living life. I have scans Friday and am more nervous than has been typical. On the other hand, we just made plans for a June trip of bicycling the Danube from Prague to Budapest, so I am choosing to think about that (when I can haha.) Otherwise, we've gone all out on holiday decorating and I'm baking up a storm. It's peaceful for now and for that I am grateful. K

I was diagnosed with Stage 1B Non-Small Cell Lung Cancer 10-years ago. Lung cancer was not my first diagnoses. I was missed diagnosed with Pneumonia and then Tuberculosis. I was told I didn’t have lung cancer because of my age. It wasn’t until 5 months later after a lung biopsy I received the diagnosis of Stage 1B Non-Small Cell Lung Cancer. It was a shock to me and my family as we do not have cancer in our family, and I do not smoke. I was 35 years old at the time and had my stepdaughter in her senior year in high school and two younger children in elementary school. My life changed the moment I received my diagnoses. Having to tell my husband and parents the diagnoses was the hardest thing to do. My kids were young and didn’t understand. Was I going to be around for my kids and grow old with my husband? Next was to just do what I needed to do to move on with life and live everyday to the fullest. I met with my surgeon and oncologist at UCSF a couple weeks after my diagnoses. Surgery was scheduled a week later. Going into surgery was the scariest and most unknown experience in my life. I was not sure I was going to wake up after the surgery to see my kids and not knowing if they would understand what happen to me? As you know I made it through the surgery and recovery. Recovery after having my lower right lung removed was painful. All I wanted to do was get home to my husband and children. I was told I was cancer free but it was still very scary to think I could get cancer again. And was told people that have had lung cancer and get the reoccurrence of cancer don’t have much success of survival. The most important thing and the reason I feel I just celebrated my 10 years of cancer free is because of Determa RX. I truly believe if I was not offered this test I would not be here today seeing and living all the milestones in my life and my children’s life. Determa RX has given me and my family a piece of mind that I have done everything possible to live a long life. To be offered this test was amazing and a no brainer to have it done. You have to do nothing. They use the cells they already have from your surgery. What this test does is determines if you need to have chemotherapy or not. If it comes by high, you need to have chemotherapy to kill all those cancer cells in your body. If it is low, the chances of you having the reoccurrence of cancer are slim. Of course, mine came back high. I had four rounds of chemotherapy after I recovered from surgery. It was not easy but I did it so I would not have to live and go through cancer again. Not just for me but for my family too. It was not just me that went through cancer my whole family lived through this traumatic time. There are things I don’t remember about it but if you ask my husband and mom they remember every moment. Determa RX is the reason I’m here today and why I can share my story.

Kristen, Nothing can take away that feeling of being gutted. But here are a few thoughts: I had a brain lesion that was fried by a gamma knife procedure; it’s gone. I met someone last summer who has had 29 brain mets, all successfully treated. One of the people in my local lung cancer group has been living with Stage 4 for 16 years. Your husband, with you, will get through this, one step at a time.. And together, you will find joyful moments, maybe as small as a hummingbird at a feeder, but find them you will. You can do this!

T, Welcome to our forums. You're not alone anymore. We are a group of lung cancer survivors who can understand all that you are going through. Like you, I lost my mother to lung cancer and was diagnosed with NSCLC myself in 2019. I had surgery, (lobectomy), and have had clear scans since. Unlike you my mother had passed away years before my diagnosis. So, while my fear, disbelief, and loneliness were much like yours I didn't have both tragedies so close together. I can tell you that even after my initial scans I was still scared and worried each and everyday about a recurrence and I was losing the joy of living. With the support of the great folks on these forums I came to realize that, there are many survivors out there and while this is still a deadly disease it was no longer the automatic death sentence that it once was. I also realized that I could choose to live or that my survival could just be a depressing, lonely time. So many here cherished each day of survival that I chose to follow them and live, determined to use my life dedicated to others in service. I reconnected strongly with my children, dedicated a large amount of time to supporting others with this disease, joined and am a leader in an Alzheimer's Caregiver Support Group (my wife is a sufferer presently in hospice), and I sponsor others in Al Anon. So, three years after my diagnosis I am still here. My last scans (August of this year) were stable and NED (No Evidence of Disease) and I'm enjoying my life again. I share all this with you not to say that this is easy, but with the help of others we who have suffered this disease can come to terms with it so we can enjoy life. We learn to take care of ourselves (eating, exercising, etc.), connect with others (such as you are doing here), and not be afraid to reach out for help anywhere. For example, my primary care physician was/is well aware of my disease and the psychological challenges I went through, and she helped me with a short-term medication treatment as well as suggesting I speak to someone for additional insight. I did both and each step I took put my life into a better focus, restored my psychological well-being and sense of well-being. You deserve the same. Last point; I'm aware that LC is a disease of high recurrence and lethality, but right now I am healthy and living a life of purpose with an acceptance of whatever the future may bring, you can have that as well. Please feel free to ask any questions and also take a look at some of the other information we offer here at Lungevity. Please take a look at our Lungevity Support Services by clicking here. Stay with us, join in the conversations, and reach out for the help you deserve. Lou

Yu-Tai, Welcome to our forums. Sorry you need to be here though. You don't mention if the tumor has metastasized beyond the lung, but I am making the assumption that you've had a full tissue or blood biopsy to confirm the malignancy. I sure understand how upsetting a diagnosis like this can be as I went through it myself (as have many others here). You really would do well to learn all that you can and there is some very good information from NIH regarding EGFR and it can be found here. Additionally we have some forums that focus on mutations including EGFR and they can be found on this page. Another important blog is titled "10 Steps to Surviving Lung Cancer; from a Survivor"...you can find that at this location. Please update us with as much information as you can so our folks can offer knowledge from their experiences with you. Also feel free to ask any questions you may have. Lou

Hi all, thought I'd finally post something after 18 months of fighting stage IIIa NSCLC. It may offer hope for those in despair. I'll try to make it short and sweet. I was a 49-yo runner, cyclist, and avid skier/ski patroller, and a non-smoker with no other comorbidities. Was ski patrolling December 12, 2021 and felt like crap, was having a lot of trouble breathing, which had progressed from faint wheezing a year prior. Saw 3 doctors on December 14 (an ENT--he thought I had post nasal drip; my husband--he thought I had an upper respiratory infection; and my pcp-she thought I had allergies.) I asked my pcp for an x-ray because I KNEW something was terribly wrong. Went immediately for an x-ray, and when I was at the grocery store an hour later to buy Flonase (per my pcp suggestion), my husband called and said to come back to the hospital immediately and get an MRI. There was a HUGE mass in my left lobe and all of my mediastinal lymph nods were ginormous. Turns out it was a 7cm x 6cm x 6cm malignant tumor in my ULL with a 70% PD-L1 expression. Had connections to a surgeon at MD Anderson who was hoping to do surgery, so I flew back and forth for these appointments. Did 3 rounds of Cisplatin, Alimpta and Keytruda at home in hopes of shrinking it for surgery. It didn't work (might have been inflamed from the Keytruda instead of tumor, but who knows). Then did 7 rounds of Taxol, Cisplatin, and Imfinzi every 3 weeks. Also did 35 rounds of radiation. Tumor responded to these treatments and shrunk by about 50%. Started Imfinzi every 2 weeks for 2 years (just finished a year), and did a PET scan this past April that showed NED. I'm still in disbelief. My next CT scan is this Tuesday. I am hopeful I am still NED, but am still scared, as I am coughing a TON after last week's infusion. Coughing so much it's giving me a headache. For my treatments I cold capped (for the Taxol one) and didn't lose any head hair, but the other side effects were hand and foot aches (neuropathy), 30 pound weight gain (145 to 175), cough (!!!), headaches, and overall fatigue. My ears are much better, but loud noises still bother me. My labs have been pretty normal, never had a problem with thyroid or kidneys. I even started ski patrolling again this past winter! So anyone reading this....DON'T give up hope. I did, I was in deep depression and despair, as I had 14 and 17-year-old daughters. But western medicince can work. Immunotherapy can work. I still have trouble with thinking about the future--I have read too, too much on longevity for cancer patients, but I'm really trying not to freak myself out. I'm also incredibly private and don't talk to anyone about it. Like NOBODY. Here's to hoping that it's dead and that it doesn't come back. Will update later this week. Stupid fricking cancer! Good luck everyone.

Hi June, Sorry you have to be here, but if you have lung cancer, you won't find a better group to hang out with. I hope you got some good info from the conference. I learned some helpful things. And the upward trajectory on treatment options and research is amazing. One thing I learned is the benefit of having both a liquid and tissue biopsy. As one doctor said, tissue is the gold standard, but sometimes that's not possible. The benefit of a blood biopsy is that it yields results much more quickly-- days, instead of weeks-- and may give information to speed the development of a treatment plan. I don't think it's possible to feel anything but scared, overwhelmed, and angry at the beginning, so if you don't feel hope yet, just let us have hope for you. For example, I'm also a Stage 4 person, and was pretty sick for a while. But I just finished a week's vacation on the Olympic Peninsula in Washington, where we hiked and rode bikes. I've been working consistently on building toward my former levels of fitness and was happy to be able to hike upwards of 8 miles a day. And, after a year of being off of my bicycle, I did a a 20 and a 30 mile ride. So, onward. There is life with stage 4 lung cancer and we can make it worth living! Hang in, we're rooting for you. Karen

Hi Kelvin, I am 52 years old and I was diagnosed with Stage 3b NSCLC on April 26th, 2021, making TODAY my one year cancerversary. Wowza, I just realized that fact as I was typing this, and I don't know how I could have forgotten. I'd better get to the kitchen and make a cake! Last summer I had four rounds of cisplatin/pemetrexid and 30 days of radiation with curative intent. I got through those treatments without too much trouble, except for about 10-12 days I spent with esophagitis from the radiation. I did not lose my hair, and mostly had energy to live my life as normal. I've been NED since the first scans after my initial treatment. My fingers are always crossed. The original biopsy revealed a Ros-1 gene mutation, which is very rare, but there are several effective targeted therapies that I'll be able to try down the line should I need to. You will definitely want to find out of she has any of the known mutations. For now I'm just trying to live my life between scans, working, traveling, and feeling quite good. There are incredible gains being made in lung cancer, but I understand how worried you must feel for your mom - I am worried for her too. I'm worried for all of us, but what we do is hang in there and put one foot in front of the other. I know you'll find the strength to do that! Keep us informed. K. Hillham

Hi Justin My thoughts are with you and I wish you all the best and it sounds really promising. I have just started my journey getting the first news that I probably have LC 2 days ago. I have no idea of the journey ahead but reading your experience has given me a great deal of hope but also an expectation that there may be many hard times ahead. Your thread is one of the most valuable on this forum as you have kept it going and keep the updates going. I am desperate to see peoples progress over time and there are so many threads that start and then just finish with no updates. I thank you for continuing your updates over time which gives me information of the journey you have been through and I can see it has not been an easy one. The way you have spoken openly about your feelings of despair have been extremely powerful. I don't even feel sick but am preparing for a journey ahead that may take twists and turns that I haven't even contemplated! I hope mine has been detected early and can be easily controlled but I have no facts yet so am preparing myself for the worst. I think I have a new buzzword for the future and if I end up in despair and wondering if it is all worth it ' I will just say to myself 'JUSTIN, JUST THINK OF JUSTIN'! Thanks for your frankness and for keeping the thread going to tell the entire story. Being still married in a loving relationship after 35 years and with three adult sons of my own, the comments from Izzy and Cody bring me to tears. I have to go and tell my mother the news tomorrow, six years after she lost my elder sister to Ovarian cancer at age 56. I'm dreading it. All the best to you and your family and thankyou for sharing.

Dad, you've done so well, you should be so proud of how far you've come and how much you've over come. Everything you've gone through is just another hurdle, which you have successfully jumped. Youve smashed every treatment they have thrown at you. You will be a survivor. And your becoming a helper to others who are sadly on the same journey as you are on. The treatment will be successful and we will be us again, I promise you. You are going to get better dad. I have so much faith in the treatment and in you. I love you dad. X Cody x

Hi everyone I got the results from the CT scan today the lung tumor is continuing to shrink and there is no other spread of the disease to anywhere else, they said they were hoping for just being stable but that this is even better than they could have hoped for, it is definitely a relief to have some good news for a change and has made me feel a bit better about the future hopefully all will be good with the gamma knife radiosurgery and they can get rid of them aswell thank you to everyone for the support Take care Justin x

Lizzy I wanted to wish you the very best and try to offer some inspiration!. I was diagnosed almost 7 years ago (this month) with Stage IV NSCLC Lung Cancer that had spread to my brain. I never had any warning or symptoms of Lung Cancer ,so it was a huge shock. It was the brain tumor and edema that caused me to see my PCP and have an urgent head CT Scan. Today thanks to ALL my treatments (Stereotactic Radiation for the brain tumor), the Chemo, following by Radiation to my chest and lastly Immunotherapy. I am now Stable/NED and doing well. I have been off ALL treatments for over 5 years and continue to remain stable. I did take Keppra for about six month while in treament for my brain tumor and it was very effective in keeping me seizure free. I was also on Dexamethasone (steroids for several months to keep the brain edema down and also help with chemo side effects. It too, worked well. I also have severe claustrophobia so the treament was a uge challenge for me, but I got through it. ❤️ I am happy to know you opted for a Port and always recommend them to folks who are having infusions. I still have mine and love using is for labs and contrast for my scans. I go in every 6 weeks for flushes! I was the same age as you at diagnosed and am very thankful and blessed to be a long term survivor and HOPE the very same for you. I never ever could have imagined I would be where I am today at that time -- and I'm so grateful to my team for finding the best possible treatments for me. Take care and be well. I wish you the VERY best! ~ Lisa PS: When I was diagnosed I did not have any grandchildren - something I had always dreamed of. Thankfully I have now been blessed with 3 beautiful grand-daughters and they have become my "littlest inspirations" and were a huge milestone in my life. They are pure JOY and LOVE!

Hi Lizzie, We’ve all been there. Although it might sound odd, you’re one of the fortunate people who had a physician that made an accurate diagnosis. Many of my friends were in physical therapy for months (and in some cases over a year) before their lung cancer was finally diagnosed. There are many different types of adenocarcinomas- treatment is tailored to what Tom pointed out- the biomarker. It’s not unusual for women under 60 to have one. It’s important to remember that diagnosis is not prognosis, I received a stage IV diagnosis three years ago and I’m in remission (no evidence of disease). In the beginning we all feel like the Twilight Zone, brighter days are coming so hold onto your hope. Michelle

Exactly one year ago I had my 26th and last Imfinzi infusion. So far so good!!

Good Morning Durva Club! It seems we have a lot to celebrate! Congrats SillyCat on completing your Durva, I hope your scans come back excellent, please update us once they are back!!! I just made it to the halfway point, and I'm so excited, it seems to have gone a lot faster than I anticipated. Mind you, I'm only going once a month, so I don't feel my life has been THAT interrupted. (Thanks COVID) I'm also happy to report that I've had very minimal side effects which has also been a blessing, I'm hoping these next 6 months don't change that. I'm curious what the next steps have been for some of you after you've completed treatment. I've talked with my onc about it, and it seems that it depends on how much of the tumor is gone/dead. I'd love to hear some real life stories of what to expect next.

Tomm, CONGRATS! Welcome to the I'm done my Durva club. Barb will be coming around the corner very soon. Seems like just yesterday we were all embarking on this Durva journey one by one. With 😎 Bob the leader. Stay positive and stay well. Hey Tomm, the K9s are asking why humans are wearing muzzles..

Good Wednesday to everyone #22 Infusion is history. Blessedly uneventful, All labs remain within normal parameters. I have been fortunate As I wind down with just 4 more infusions, I'd thought I give a run down of my personal experiences and side effects for the new initiates who may find themselves on Durvalumab and are learning from our forum. I've only included symptoms that were never present prior to my NSCLC and initiation of Durvalumab. Itchies-Broke out in a rash to my back about 6 months in. The rash quickly resolved but my itchiness to my back remains. I've had good luck in treating it with Hydrocortisone 2.5% cream and an antihistamine as needed. Pneumonitis- Diagnosed about 4 months in. From radiation therapy. Had to skip/postpone two doses of Durvalumab and was treated with Prednisone. Durvalumab was resumed, pneumonitis resolved and my pulmonary function tests improved and remain normal. I will be getting all 26 doses of Durvalumab. Generalized Aches and Pains primarily to my back and thoracic area- Very disconcerting as my chest muscles ache, my ribs ache, my lower back aches. Was told this is due to post chemo/radiation and Durvalumab. Tylenol works but if the pain really hobbles me, Motrin is my go to pain relief. Got my medical marijuana card and purchased some THC/CBD tincture......didn't work for me. Maybe I didn't titrate dosing properly but I just got really stoned and loopy and my pain was still present. Joint Pain and Joint Muscle stiffness- I've really noticed an "awareness" of finger, toes, ankle and knee pain about 8 months in to my infusions. To be fair, I've had a few tumbles where I have hurt myself but the healing has been delayed and joint pain more pronounced. Again, Motrin seems to help. Had a fall from my bike couple weeks ago. I called it a soft landing since the bike just got out from under me in a mud bog. I've never bruised so extensively. Fortunately, the bruising was the worst of it and my injuries were minor. Headaches- I mention this because I rarely suffered from headaches prior to Durvalumab infusions. Currently, it's a rare day if I don't have a headache for an hour or two. I do not treat with medications since it abates by itself. Skin changes- My skin bruises easier and little cuts and wounds take a lot longer to heal. My skin texture seems more fragile and my skin is definitely a lot drier. Weight Gain- Been a skinny whinny all my life so a 25lb weight gain is significant. My appetite has increased so I've had to pump up my physical activities which has been challenging since... Faitgue- Has plagued me from chemo/radiation to today. Unrelenting presence, I do the best I can do by maintaining my physical activities and pacing my responsibilities. Peripheral Edema to ankles, shins and fingers- After months of watching my ankles swell, I finally obtained some Lasix to use on an as needed basis. I had my wedding ring resized prior to my diagnosis so I am absolutely positive that my fingers were swelling and it was not weight gain. Fortunately, the swelling in my fingers subsided and I haven't had and ankle swelling since I obtained my Lasix Rx. I have been fortunate and have dodged the more serious side effects. Update on voice hoarseness and ENT appointment- Official diagnosis; Left vocal cord paralysis. Most likely caused by lung tumor impinging on my laryngeal nerve. Though, and here's the rub, usually if tumor is on the right, right vocal cord nerve affected and vice versa, if tumor on the left, left vocal cord affected. Well, I had to be different as my tumor was in my right lower lobe but my left vocal cord is paralyzed. I did have subcarinal lymph node involvement and that may explain why my left vocal cord is affected BUT, to be on the safe side, my ENT MD and Oncologist are now in discussions about either a Pet Scan or Cat Scan to rule out any progression in my left lung. In the mean time, I am scheduled for surgery next week Thurs to mediate my vocal cord paralysis and hopefully, allow me to get my voice back. Abdominal Ultrasound to rule out ascites- Results from yesterday pending. I will see my PCP next Tuesday and all my tests and "to do's" should come together before my surgery. What a journey huh.....one day you're skipping along fine and then BAM, you're slammed and get warped into this medical world of tests, procedures, adverse events, side effects and advocating for your own well being, for your LIFE. My son is a Navy SEAL and he told me I got this, that it was my fortitude and dealing with adversity that allowed him to be the man he is today. Nice words when your world is falling apart, and you sometimes feel overwhelmed, defeated and just plain tired. So to all my peers on this journey, hang tough, advocate and carry on. We can do this. We are doing this. Take Care all, DFK

Thanks Michelle Just heading out the door for the last one, Twenty six consecutive infusions and now Durvalumab will be a thing of the past. What next.😎 Que Sera Sera Bob

Hello Forum posters! These forums are a good place to share information, support and hope, Please keep in mind that what you post here can be seen by anyone.. For that reason we have a guideline against posting personal contact information like your address or phone number. If you want to send a personal message to a member, you can do that by using the little evelope icon at the upper right of the home page. Those messages can only be read by the intended recipient, so they can include personal contact information. Be aware that Lungevity doesn't check out members to be sure they're who they say they are, so when positing or personal messaging please have your personal safety in mind. Please keep on sharing and supporting each other. It really makes a difference. Bridget O

I have officially been infused. LOL I was pretty nervous. I ate a bag of cheesy poofs during the infusion....nervous snacking I guess. I got the orange cheesy powder all over everything. On the blanket and the chair....the nurse. It was even in my hair.🤣 Picture Pigpen from Charlie Brown..only orange. LOL Infusion was an hour, prep was an hour...so not too bad. Kinda nice to only get ONE bag-o-drugs after all the bags of stuff they had to give with chemo before! They didn't weigh me prior though. But I'd been weighed the week before. Recommended dosage of this stuff is 10 mg per kg.... I got 475 mg so that sounds about right I guess! So far so good...🤞 -

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.

Hi luvs2crossstitch, I was recently diagnosed with adenocarcinoma in early February, I learnt it was stage 4 on the 28th. I am only 33. I understand what you are feeling. I am currently in residency, studying in Internal Medicine. I have spent my entire life being healthy, no smoking, hardly drinking, working out, studying. I feel like I've focused my whole life on the proper order of things, getting my career, that to have this diagnosed now, I know I am not ready. I am currently in the process of harvesting my eggs, since I have no children, and then i have to start lifelong targeted treatment, I have an ALK mutation, which I've been told is rare, especially in my age group. If you want feel free to message me, we can go through the stages together

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.

Hi Justin, Welcome to the club that nobody wants to be a member of. Let me first tell you something you need to hear; "Lung cancer is NOT the automatic death sentence it once was!". We have members here with as much as 16 years since diagnosis with cases starting in Stage 3. Now, the other thing I can tell you is; stay away from Dr. Google, it is not your friend and the data they use is averaged over a 5-year period so it does not reflect what is happening on the ground right now, today. We all have a lot of experience to share with you and will be happy to answer your questions. Just know that from now forward You Are Not Alone. One of our leading members wrote an excellent treatise called "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find that here. As you learn more of your diagnosis and develop questions please share them here and we'll provide the best responses that we can for you. Receiving a lung cancer diagnosis is overwhelming, but do your best to stay calm and focused on learning more about this disease, spending some time here and getting involved with your treatment team. Also, if a biopsy is taken (surely it will be) you need to advocate for biomarker testing to see if there are any genetic anomalies that would make you eligible for immunotherapies now or in the future. Hang in there, and I look forward to hearing more about your case and any questions you have. Lou

UPDATE: as of Tuesday March 30. 2021 After meeting with Thoracic Surgeon and Med Onc I have a game plan. Surgeon made it Stage 3A. He is doing a Mediastinoscopy Friday to make sure everything is clear and nothing missed on the PET. Then do Chemo - Once very 3 weeks with 4 treatments total. Break for 4-6 weeks then Lobectomy (RLL) Depending on EFRG, maybe a medication daily forever. Note: Chemo will be Alimta and Cisplatin I still feel fine, except a bit anxious that my PCP noted. LOL OH and in the folder of support information from Hershey Med Center, there was a thing about Lungevity for support. ~Kris