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  1. This link is to an article in O Magazine. I am beyond thrilled to see a mainstream publication pick this up. http://www.oprah.com/health_wellness/new-treatments-helping-lung-cancer-patients-live-longer Every day is good.
    13 points
  2. islandgirls

    Family Response

    Update: Today he told me and I quote: ”I am doing the treatment no matter what (daughter) says.” I burst into tears, jumped up from the table and ran around to kiss him. Then I made him pinky swear. I am still cautious until the port is in and the first infusion happens, but ladies and gentleman, I applaud and thank you for your assistance!
    12 points
  3. Lenny Blue

    Lung For Sale.

    Fifteen months ago a few weeks after my lung cancer diagnosis, I had a four hour surgery to remove a tumor in my femur. A 15” titanium rod was inserted in my femur to prevent breakage. On Jan 1, 2020 I awoke that morning in my private room shivering . A nurse walked in and I asked “ what happened, its freezing in here, is this the morgue? “ She laughed sheepishly noting someone set the thermostat to 63. Lesson 1; it feels better to laugh and make people smile. As the months went on I had high dose radiation to my brain as well as as my femur. A year later between chemo/immuno, surgery & radiation, I’m thrilled I’ve been able to keep the illness from progressing with lung tumors reducing 75%. No head or femur tumors. This spring I was able to tend my vegetable garden and do outside chores that I love doing. I also was able to enjoy my local pool with Elaine and soak in the sun & play my guitar and harmonica. I also was able to visit my cousins and aunts to brighten the summer. Lesson 2 : Don’t count the days, make the days count. Being a lung cancer survivor, ( one year plus ) I also decided to volunteer @ Cancer Hope Network as a mentor to people that need help , support and have questions in regards to their illness. Its very rewarding and I thank my mentor, Pat Tawes , RIP. Lesson 3; Do what makes you happy. To say I’m grateful is an understatement. For me personally 2020 was a win with my current health. Even having to be treated every three weeks with chemo ( for life ) with scans ever three months, numerous blood test and side effects ,I’ve adapted to my reality. I did have to go through the sadness of losing my aunt to COVID and my cancer mentor, as 2020 was difficult for so many. I hope and pray for my FB family and friends that we can be reunited again soon with warm hugs and kisses. ( not virtual ) Lesson 4; Cancer didn’t bring me to my knees , it brought me to my feet. Be kind to one another. Be safe, be healthy. Enjoy life.
    11 points
  4. LexieCat

    Cheer me up

    It's 2020, so...
    11 points
  5. LouT

    Happy Thanksgiving

    I just want to wish everyone in the USA a Happy Thanksgiving. There are many things I'm grateful for and this group is near the top of my list. I hope you have a fun, comfortable and safe day today. Lou
    11 points
  6. Steff

    Keytruda, 1 year later

    Hi all, Since my other discussion thread was getting quite long and it's been 1 year since my mom started Keytruda, I decided to start a new thread here, where it might be better seen by those who are looking for information on immunotherapy. So, the 1 year update on my mom....she survived and lived to talk about it!!! She got her CT results yesterday and it was all good news....area around the cancer is stable and may look better (inflammation-wise). We have not been able to see the mass on the back of her trachea since October (2 months after beginning chemo + Keytruda). It still could be there, but it is not causing any problems. I don't know if the term NED will ever be used with her since we cannot get a perfect picture of where the mass was, so we are just using the term "stable". So, for us, "stable" is great news!!! There is a "shadow" that is showing up in her left lung that appeared out of nowhere. Her pulmonologist thinks it is most likely some inflammation or infection - he will keep an eye on it, but is not alarmed by it. Her shortness of breath still persists, she has 1 more heart test to do to see if that is the problem. If it is not, we are to the point where we will likely accept shortness of breath as a new normal for her. Luckily, her pulmonologist does not believe that Keytruda is the culprit, so we plan to stay on it as long as possible. Keytruda side effects: severe itchy skin - it drives her crazy especially at night. She currently takes Benedryl at night if itching is out of control and she has also found an Aveeno excema cream that relieves itching for a bit. Although the itching is bothersome for her, she would rather deal with it than cancer. Other side effect, but it is controlled by meds is her thyroid. She had a slow thyroid to begin with. It got slower, she just increased her meds and it is now controlled - no big deal. Docs keep an eye on it and increase/decrease thyroid med dose when needed. This time last year, I felt hopeless. My mom's lung cancer recurrence was a punch in the gut. I was heart broken when we were told that due to the location of the mass, it could not be surgically removed, nor was it recommended for the first treatment attempt to use radiation (some of the mass was in the original radiation field from her previous bout of lung cancer). So came the recommendation of Keytruda + Alimta/Carbo. I was unhappy and scared of this new "immunotherapy stuff". But this"immunotherapy stuff" is the best thing that has happened for my mom's lung cancer. If you are a newcomer to lung cancer and/or immunotherapy, do know there is hope. My mom has more hope now of surviving cancer than when she was originally diagnosed in 2015. And it is all due to continued lung cancer research and development of new treatment options. My main take away from this last year is: 1) My mom is tough as nails, 2) Even in the darkness of a lung cancer diagnosis, there is hope. Take care, Steff
    11 points
  7. Hello and Welcome. Unfortunately your post is all too familiar, no one wants to join this club. Everyone is reeling when the words lung cancer are spoken. You’ve done some homework which is good. The “survival” statistics from Dr Google are way off. These days lung cancer isn’t necessarily a terminal diagnosis. Smoking is a risk factor for lung cancer not a cause. Anyone with lungs can get lung cancer. Most often it is diagnosed in late stages as there are no symptoms. It’s hard to wade through all the emotion while quickly coming up to speed with what seems to be like learning a foreign language. This is a process, one step one procedure at a time. For the practical getting started, yes biomarker testing is the next step, as long as it is a comprehensive panel that tests for all genetic mutations not just a few of them. Be sure a brain MRI is included as part of the evaluation too. Regarding access to care, there are resources available. Many of the National Cancer Institute designated centers will do a second opinion via telehealth. You might have to advocate for this (which is a polite way of saying really push for it). I’ve also taken advantage of Angel Flights, it’s a free service. Cancer centers also make arrangements for low cost or free lodging as well. It all depends on how well your Dad feels. Lungevity has a help line staffed with social workers to assist with resources. As for the how to move forward, it’s one hour, one day at a time. Try and keep your relationship as it was pre-diagnosis. If your kids were around, then by all means proceed. Ask your Dad about what you can do to be helpful- is it meals, shopping or a household repair that’s been hanging over his head (even if it seems irrelevant to you). Hope is what we all strive for since there have been more scientific advances in the last three years than the last fifty for lung cancer treatment. Upon diagnosis I was told I had about six months to live. That was almost three years ago. For me personally, I didn’t want anyone tip toeing around me as if my funeral was around the corner. All I wanted was to try to establish a sense of normalcy in what was a tornado of emotions. As you can see there’s a lot of really terrific people here. Please feel free to ask us about anything. Nothing is too trivial. Michelle
    10 points
  8. TJM

    NED is NED.

    A dear friend just got her tests back for Breast cancer. She is NED! NED is NED and I could not be happier! Peace Tom
    10 points
  9. GaryG

    Family Response

    If my family is not there for me through bad times, then they are not my family. Risking putting my family through suffering? Well sorry about the inconvenience but this is not about them. It is not like I have decided to have cancer. As for the odds, as long as there is a glimmer of hope, there is a chance to beat the odds. That said, going through the cancer journey is a sure way of weeding out the caring from the uncaring, the true friend from the false one and a close family member from a non family member.
    10 points
  10. So I checked my mailbox yesterday and saw Lungevity uh, magazine? sitting there (don't know why I started getting these - it's the 2nd one I received). Flipping through and glancing at the content... and this caught my eyes! I read it through and yup, as always, very well said, Mr Galli, good on you! (I said that with a virtual pat on the shoulder, obviously) 😁👍
    10 points
  11. LexieCat

    Chemo Screamo

    I don't know what kind of condition/test results would persuade me that eating liver is an option. Some things are simply unthinkable.
    10 points
  12. Hi Everyone! It has been a few months since I have stopped in to see how y"all were doing in these crazy, scary times. I hope you are all staying safe and not taking any undue chances. I know I'm very nervous about going out anywhere. I haven't been out of the house other than going to the doctor's office for my Keytruda every 3 weeks for months. I've been watching LOTS of TV and doing a lot of yoga as I am not only a yogi but I'm a yoga teacher and had been teaching for over 10 years when I got my diagnosis. A quick story of my stage 4 lung cancer is it was caught in pre-ops for an upcoming shoulder replacement surgery in January 2019. I was in shock and petrified as most people are when first diagnosed. The universe sent me to this website where people like Tom, Rower Michele and so many others treated me with kindness but also with truth. Yes, I was scared but I was told not to freak out, try to think positive thoughts and as Tom signs off "stay the course" (maybe the best advice I ever got). Chemo was hard but it took 85% of my cancer away. That's about a year ago and I have been on only Keytruda ever since. I had a PET scan in January 2020 that showed the "nodule" that was left in my lung had grown slightly and the SUV went up a few ticks. My oncologist (the best EVER) sent me for SBRT radiation treatment in hopes of, in dr's words, "zapping it." I went for 5 treatments and it was easy peasy. My favorite of treatment of all I have been put through. Now, the wait. I had to wait 3 months before I could have another scan which I had in the middle of the whole Covid thing. The results were great. My oncologist was thrilled. The nodule was zapped and although there is still something (like a smushed up thing) there my oncologist thinks that my next scan will be really really good. I'm not out of the woods yet. I guess I'll never be but my hopes are high. I hope not too high. As I said before I am a yoga teacher but I was down to teaching one class a week because of not knowing how I would feel from day to day, the extreme fatigue from the Keytruda and of course my mind telling me I wasn't really a teacher I was really Cancer Girl. Once Covid hit I started taking online yoga classes and I realized that online classes could be something that I could do. I wouldn't have to leave my house and even if I was tired I could make it though teaching an hour and 15 minute class. It actually takes my mind off it. So I decided to give it a try. I contacted some of my old students and I started teaching 3 Zoom classes a week. 2 gentle mat yoga classes and one chair yoga class. I started classes up at the beginning of June and have been shocked at the attendance by my old students. They were thrilled to have me back. So, here is the reason for this whole long story. I will be making a donation to LUNGevity monthly from my yoga classes. As of today this month's donation will be $50-$100 based on student attendance.I will make this donation after the 1st of every month. You guys and gals have helped me so much I can't even tell you and I know I haven't contributed much to the website. Now I can pay you back for all you have done and continue to do for me. Thank you all for how much you have helped me along this journey. I love you all and my hopes for you are good scans, a long happy life and much peace and light in your lives. Namaste, Claudia
    10 points
  13. BridgetO

    Scared

    Hi REG, Being over 65 doesn't mean you can't deal with lung cancer, or any cancer for that matter. I was 70 when I had my lower right lobe removed due to non-small-call lung cancer. Admittedly, my tumor was smaller than yours. However when I was 66, I had a non-lung cancer that was advanced and aggressive, I had a BIG surgery, followed by radiation and chemo. Despite some long term side effects of that grueling treatment, I'm fine today, with No Evidence of Disease (NED). At 74, I work part time, travel when I can afford it, and generally have a good quality of life. Hang in there and don't despair, REG. Bridget O
    10 points
  14. Rower Michelle

    Durvalumab

    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
    10 points
  15. Had to draft an email last week discussing the longevity of the firm where i work. With every draft and change, I typed lungevity, not longevity. We know what's foremost in my brain!
    10 points
  16. Susan Cornett

    NSCLC Round 3

    You know you are a cancer survivor when you get excited that you only have one tumor!! Got PET and MRI results this morning and the nodule in my lung is the only thing that lit up. Will meet with radiation doc and get started with SBRT soon. That loud swoosh of wind you heard today? A collective exhale from Texas.
    10 points
  17. Mally

    Ct scan results

    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
    10 points
  18. 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
    10 points
  19. Tom Galli

    Family Response

    Islandgirls, Have I faced the choice of treatment, knowing odds were not in my favor but chose to do it anyway? Yes. Note I did not include the portion of your boyfriend's question "risking putting your family through suffering". I pondered that statement for a long time before attempting this answer. My life, like all others, will end someday. My family will grieve my passing. Despite my best efforts, I cannot postpone my expiration date nor the associated grieving. These two realities seem to be an unalterable fact of life. I've experienced many gruesome treatments and side effects and unplanned effects in my battle to stay alive. My family kept a close vigil. They were saddened by my condition but did they suffer? I asked my wife and daughter this very question and their answer was an unqualified no. My daughter was upset because she was unable to influence outcomes. My wife wanted to ensure I was not in unnecessary pain. I was on death's edge on several occasions but there was no suffering. The drugs administered while in a medically induced coma erased my short term memory so I have no recollection of the plight that rushed me to the ICU. As best as I can determine, we only get one chance at life. If we choose treatment for lung cancer, we get a chance at life extension. If we don't choose treatment, we'll experience a shorter lifespan. This is the decision I faced. I believe the mathematics principal of simplifying the equation before solving applies in this situation. Simplified, the equation resolves to life or no life. Stay the course. Tom
    9 points
  20. LexieCat

    Family Response

    My family, small as it is, has been very supportive. My daughter came out from Colorado (where they all live) to stay with me the first few months. I didn't really need the help, but I did appreciate the company and the support. My son drove her out here, so I got to visit with him before all my treatments started. My daughter moved back home right before Christmas. I'm very close with their dad (my ex) and his wife, and they check in with me and give me moral support, as do my brother and his wife. If my cancer/treatment become terribly involved/complicated, I'd consider moving back to be closer to them. Or maybe one of them would come back out here. As others here have noted, if I were to run out of options that would give me at least a shot at a decent quality of life, at that point I might re-assess and decide to forgo further treatment. But I'm a ways out from that right now--I've been having a good response to the chemo/immunotherapy. Know what my response would be to a family member who wanted me to forgo treatment because they didn't want to see me suffer? Then stay away. Seriously. I'd sooner deal with it on my own, with people who will support MY decisions, not impose theirs on me.
    9 points
  21. Judy M2

    Family Response

    Of course everyone supported my decision to undergo treatments! My oncologist wanted to be aggressive, and boy was it ever. I suffered severe side effects from radiation and chemo and almost died last year, but I believe my case was extreme. I have stared death in the face and came through it stronger and unafraid. Quite frankly, my decision to go through treatments was mine and no one else's. Yes, my husband of 29 years suffered too, and so did my sister. But this is MY fight. Their job was to be there for me, as I would be for them. My husband was an excellent caregiver, for which I am grateful. Would I do it again? Yes, but I'd be smarter and engage palliative care at the beginning. They are experts at managing pain and other side effects. Had I done so, I could have avoided really painful and unpleasant abdominal surgery and protracted recovery from that. At the very least, have your boyfriend speak with a palliative care team so he can get an idea how they would treat chemo side effects. They are so nice and really listen to their patient. Good luck.
    9 points
  22. Curry, Welcome here. One can spend time pondering the why of a lung cancer diagnosis. I believe time is far better spend moving down the diagnosis path towards a treatment plan. These days, there is substantial life after lung cancer, thankfully! You've had a biopsy (indicated by your mentioning of NSCLC) but you don't disclose the subtype of NSCLC. It comes in 3 flavors: adenocarcinoma, squamous cell and large cell. Of these, targeted therapy only applies to a small population of those with adenocarcinoma. Immunotherapy, however, is our Stage IV treatment godsend! It may treat all NSCLC flavors; it thankfully is showing results with deadly small cell lung cancer. Here is information on targeted therapy and immunotherapy. The genetic screening or as we refer to it, biomarker testing will disclose which of these methods will produce the best results. At Lungevity, we do not comment on specific treatment providers except in a general sense. These three general categories might be termed as: neighborhood clinic, hospital, cancer research hospital. The first principal of treatment is that you feel comfortable and trusting of your medical oncologist. At Stage IV, your medical oncologist (also called a hematologist and oncologist) will be the quarterback of your team. Also playing will be a radiation oncologist and a pulmonologist. Some medical oncologist who specialize in lung cancer treatment are rebranding as thoracic oncologists. The results of biomarker testing might also influence your choice of a treatment location. If you have a rare biomarker, then you might seek out a cancer research hospital. If you don't have actionable biomarkers, you might be better served at a neighborhood clinic. In our disease, lines of treatments (method & type) are governed by what is termed a National Standard of Care. So if one has vanilla (my term) lung cancer (a type not having actionable biomarkers or immunotherapy suitability), you will receive the same method and type of treatment at a neighborhood clinic as in a cancer research hospital. I'm a long tenured Stage IV survivor. Here are my suggestions for surviving lung cancer that includes information on choosing physicians. To your disability question. During my first line treatment (30 sessions of fractional radiation with concurrent weekly chemotherapy), I chose to use short term disability. My first line treatment purpose was to allow surgery and though successful, I endured many complications. After removal of my lung and resolution of complications, the Social Security Administration declared me disabled. I sent the check back and returned to work while undergoing chemotherapy to address a metastasis after surgery. I continued employment for 9 years until stress, chronic pain and difficulty sleeping combined to make my life miserable. Then I sought and obtained disability. As a Stage IV patient, Social Security Disability is normally an easy determination. Here is information on applying. But be mindful that if you are employed with health insurance benefits, there is a 24-month delay in the start of Medicare when one is found to be disabled by the Social Security Administration. For me, work was an outlet that allowed me to feel productive and engaged in society. I liked the challenge of my job until the challenge started gnawing at my chronic pain. But, I've found that lung cancer is a disease of life. I've learned to embrace living over worrying. Likely you've consulted "Dr. Google" about survival statistics. You might read and ponder this instead. Welcome here. I think you'll find this is a good place to learn about lung cancer and realize that life after diagnosis can be rich and meaningful. Stay the course. Tom
    9 points
  23. There's a game on Sunday?
    9 points
  24. Conor, incurable does NOT mean untreatable. We don't know yet what kind of cancer you have, so I may be saying something inapplicable to your situation, but I (and many others here) have Stage IV "incurable" cancer. Some are 15-20 years out with no evidence of disease. They don't use the word "cure" for Stage IV, but the longer you get out from your diagnosis without a recurrence (after treatment), the less likely you'll ever have one. So yeah, your situation is scary and I don't blame you for feeling down and scared. But try not to write yourself off too soon, or your plans for a great future. You might just get that.
    9 points
  25. Tom Galli

    I HATE THIS CANCER!!!

    Welcome also. Yours is a compelling story that matches the pain and anguish of all of us here. I can only offer my experience as a measure of hope. I had 5 recurrences, after chemo/radiation, 3 surgeries, more chemo, then more again, and finally precision radiation. I was diagnosed in February 2004 and progressed to Stage IV. If I can live, so can you! Stay the course. Tom
    9 points
  26. jack14

    CT scan results

    Well, I saw my Onc today and got the results of yesterdays CT scan. She had told me last week that she was not very optimistic that the Keytruda was working for me. She based that on the one lymph node that she can palpate which didn't feel as though it had shrank any, but had maybe even grown some. She added that we would probably be switching to chemo therapy a day or so after the scan. I had my first taste of "scanziety" and I sure didn't like it. So, I get my blood drawn for my tri-weekly labs and vitals taken. And she walks in the room and, we are both wearing masks so I can't see her expression. Her eyes seemed to shine though and I was hopeful. She sits down in front of me and says, "I have some good news", and tells me that the scan showed moderate but definite tumor regression in the primary lung nodule and in the two lymph nodes. So, we will continue with the Keytruda regimen. whew.....thank you God. Please project this blesswing to my cancer brothers and sisters as well. amen
    9 points
  27. Lisa Haines

    Keytruda

    May and Jack I have KRAS (12v) and currently there is NO FDA approved drug for this mutation. There are two Clinical Trials for KRAS 12C that seem to look promising, but they would not work for me, as I did not have that Variant. As a follow up, I met with my Oncologist last week, after my scans for results and happily I am still stable and my GGO (Ground Glass) continues to improve. He is thrilled with my results and feels based on my long term response and data from the clinical trials, that I should continue to do very well for many years. He also said that at this point (now over 4 years stable without any treament) that IF I did develop cancer it would MOST likely be a totally new cancer and may not even be KRAS+. And IF I do have any signs of any new cancers they would do a new biopsy and full genomic profile. That was very interesting and exciting news. NOW I hope I am going to remain stable, and if for some reason I do develop a secondary LC, I'm going to hope it's not KRAS again. As for NSAIDS, I can no longer take them or aspirin, due to GI issues from long term use for many years for pain due to Fibro and long term degenerative disc disease and also because I'm on blood thinners. I am now on a pain patch which is opiate based, but it's necessary for me and I've adjusted to it at this point. Hoping once I get through my upcoming hip surgery I can slowly taper off it or at the very least decreasemy dose. I spent years trying to find the right meds for the most significant pain management and it was a Palliative Care Team that was able to help me figure out the best options. I do not like to take a lot of meds (even though I'm on quite a few), but sadly with some illnesses it is necessity and if that's what it takes to have the best quality of life, I'm fine with it. Best wishes to you!
    9 points
  28. Tom Galli

    First Time Out

    Today, I ventured out of the house for the first time since March 2nd. It is 86 degrees, no wind (reduced pollin), and I’m sitting in a lawn chair in my front yard overlooking a verdant green cul-du-sac. There is hardly any noise except for the birds and what might be the first chirping of cicadas. This is supposed to be a loud summer. It doesn’t sound that way yet. It is the dinner hour for most so the quiet stillness is expected. Still, it is abnormal in my experience. I read a news piece that Rush Limbaugh is having a tough time with first line treatment. Lung cancer is the great leveler. King or surf, prince or pauper, everyone gets the same stuff. Most of us don’t get celebrity attention. I’d venture most of us don’t want it. Can you imagine having to get all gussied up for an interview two days after an infusion? No thank you! But Rush is notable in some circles and his plight (the stuff we all quietly deal with) somehow becomes newsworthy. On reflection, I can think of a number of notable persons among us who ought to endure our “plight”. If they did, I bet the lung cancer world would be vastly different. Did you know Hope Summit alumni are having a Friday zoom-meeting. Let me know if you are interested and I’ll ensure you get an invite. It is great fun. No news from me is good news. Stay the course. Tom OBTW—am well socially distant. Closest thing to me is a male cardinal who is slightly pissed off with my intrusion!
    9 points
  29. Tomm

    Durvalumab

    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
    9 points
  30. Robert Macaulay

    Durvalumab

    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
    9 points
  31. Kleo

    Durvalumab

    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? 🤣🤣
    9 points
  32. 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
    9 points
  33. wwroam

    Good CT scan results

    Yesterday I received the results of the CT scan from a week ago. Still in remission. My oncologist seemed quite pleased /confounded as I have never had surgery , only chemo ( Gemzar+ Carbo and Taxol + Carbo) and radiation. He had played a small trick on me by leaving the scan from his previous patient on the light screen. it looked pretty awful but he did say that it wasn't mine and that mine was a lot prettier.
    9 points
  34. Laurel

    PET SCAN

    On Tuesday, January 29th, I had my first PET scan following the end of radiation treatment in October. I was a mess....stressed... nervous. I received results today. No evidence of disease....No Cancer! Wonderful! My next PET scan is in June. I hope I handle it better.
    9 points
  35. I'm going on vacation Wednesday, and won't be back until after Thanksgiving. I'm going to Vietnam! I'm really excited (though always a bit stressful taking care of final details before I leave)--this is the same tour company I went to Morocco with a few years ago and they are AWESOME. They do a lot of culturally-oriented activities, including spending time with local families. A colleague of mine went on a trip there several years ago and LOVED it. I've done my own research and it sounds like it will be a fascinating place to visit. I'm taking my iPad, and apparently wifi is readily available most places we'll be, so I may pop in from time to time, but probably not as much as I normally do. Unlike Tom, I am not likely to be posting long, detailed posts on my iPhone, lol. Just didn't want anyone to think anything's wrong.
    9 points
  36. Linnea Olson

    Shocking news

    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
    9 points
  37. KatieB

    Hi, I'm Paula

    it's ok to be a realist. Be prepared and share with others how you're feeling and the reality of your diagnosis. Death is imminent for us all whether or not we have lung cancer. Not looking sick is both a blessing and a cure- I know! HA! Talk to your family about your wishes and hopes...and fears too. After you've done that- it's time to live. Whether you have 1 year or 50 years- it's about quality of life. How is your quality of life? How can it be made better? Are you adequately supported? Is your pain being managed? Do you have a good medical team and support from family? Yes there are people who pass away from this disease- no one is promised tomorrow- but there are survivors too. As long as you are breathing you're surviving. Today, more than any other time, there are more options for people with lung cancer. There are more people surviving and living quality lives with lung cancer- many of them are right here to connect with you and encourage you. it's OK to be afraid, uncertain and sad. We are here for you., Counseling and/or a support group may help too. People who get it will understand the ups and downs of this disease. How are you feeling? what is your treatment plan? Do you have a support system? Keep posting. I look forward to getting to know you. Much hope and many hugs for you-
    9 points
  38. Hi there, and welcome from me, too. Michelle has given you great advice. Nobody--not even his doctor or the best oncologist in the world--can tell you how much time he has. I do know there are a few folks here who are 15-20 years out from a Stage IV diagnosis. And the new discoveries and treatments are coming out every day. I started out with a tiny tumor, easily removed by surgery. But three years later, it came back, in the other lung, and spread to one of my bones (along with several lymph nodes), making me Stage IV. I did well on chemo/immunotherapy for a few months but then the cancer stopped responding and started to grow. So right now I'm preparing for a clinical trial of a new, cutting-edge treatment. It's iffy whether I can do it--it will depend on the tests I had done this morning--but if I can't, there are two other trials I'm eligible for--all within a half hour's drive. So there is plenty of reason to be hopeful. You'll know a bit more after all the testing is done. But I agree with Michelle, follow your dad's lead in terms of what he needs or would be helpful to him right now. You might tell him about this forum, too--I've relied on the folks here since I was first diagnosed four years ago. It's a great place to meet other people going through the same stuff you are.
    8 points
  39. AleHondaa

    NSCLC 22years old

    Update for my people’s lol I had my appointment with the neurosurgeon and it seems that there’s growth on my c2. Good thing is radiation feels like it’s being effective since I’ve been feeling a good amount of relief recently. If that’s the case then I don’t need surgery and the bone will be able to heal on it own. I haven’t had any pain recently which is good and it’s really just discomfort now. Thankfully things seem to be going in a good direction. If anything I’ll be needed more radiation but we’ll see. 🙏🏼
    8 points
  40. Rower Michelle

    Family Response

    Hello and welcome, You’ve already heard from the amazing people here in how they approached the first round of treatment. I was diagnosed at the age of 51, the initial biomarker studies yielded nothing targetable. I still remembered how my Grandmother suffered through chemo when I was a child and my initial reaction was to not go down the chemo path. We had spoken to a few close friends who were devastated but no one pressured us into doing treatment because they held the same misconceptions about lung cancer treatment I had. The next appointment with my oncologist I told him I didn’t want to do chemo. His response surprised me “I think it’s going to make you feel better”. I couldn’t get my head wrapped around it but at the same time nothing was helping that cough and I didn’t want to break any more ribs. After a B12 shot I started Folic acid and the following week I received the triplet combo. The team was very proactive in managing the potential side effects, with a little bit of constipation from the steroids. There has been more progress in lung cancer treatment in the last three years than in the last thirty. In 2020, there were 11 (possibly more) new therapies approved by the FDA. The treatment pipeline is a big one. While every treatment decision is personal, I’m glad my oncologist gave me a little push... Michelle
    8 points
  41. Our medical world grows in complexity. There are now doctors with titles like thoracic oncologists and interventional radiologists. All this specialization has a place in our increasingly convoluted world of unpronounceable drugs and obtuse procedures. Amid this world of complicatedness toils the general or family practice physician. In my mind, they are the most important physician in the medical system. Why? Last night at about 7:30 PM, I was notified that my first dose of COVID vaccine would arrive at my GP's clinic today. Moreover, the practice nurse would contact me today (and did) scheduling my injection. Think about that. An after hours call from a real human being (my GPs wife) who was making many phone calls getting the word out. One won't get that kind of care and attention from a "Minute Clinic." General medicine is an important resource for everyone; it is vital for lung cancer survivors. Audition one soon! Stay the course. Tom
    8 points
  42. teesqr58

    I HATE THIS CANCER!!!

    I’m a 62-year old man with Stage IV Non Small Cell Lung Cancer (NSCLC) In May of 2017 I was diagnosed with Stage 1 Non Small Cell Lung Cancer (NSCLC) in my left lung, and I was scheduled for surgery within the next 2-weeks. It was devastating news for me and my partner Bob of 30-years and we had much difficulty accepting the news, not to mention my 26-year old nephew who lived with us and whose own mother had died from lung cancer some 10-years prior. On the scheduled day, I got up at 3 AM and showered with surgical soap as instructed, and by 5 AM I was making my way across the still dark hospital parking lot as the sun began to barely rise above the horizon. Once in the hospital, time seem to accelerate and before I knew it I was waking up in the recovery room while being told that the surgeon had removed an entire lobe of my lung. My healing from the surgery went well and in follow up scans 3-months later I was free from cancer and given a good prognosis. Thank God I had dodge the cancer bullet. Then in May of 2018 routine scans showed the cancer had returned in the same lung and so I spent the summer on chemo and radiation with luckily very little side effects. By fall my scans showed that the cancer had disappeared and I was now considered in remission. I couldn’t believe my good fortune and that I had now twice dodged the cancer bullet. Everything moved along fine and follow up scans still showed no sign of cancer throughout 2019. We were so relieved and thankful to God for this blessing. Then in May 2020 my CT scan showed the cancer had returned again in the same lung, but this time had also spread to my right lung, lymph nodes in my chest, and my liver. I was diagnosed Stage IV and told that without treatment I had only 6-9 months to live. I don’t cry easily but I just broke down in the doctor office and couldn’t stop crying. How was I going to tell my partner and my nephew this news? Would I have the courage and strength to be able to do it? Would they have the courage and strength to handle it? I left the doctor office in a daze and when I got to my car I immediately called my brother and broke the news to him and my sister-in-law. They were so stunned that they didn’t say anything for the first 10-minutes of the conversation. Finally my brother spoke and told me he was so sorry to hear this and that he and his wife would do everything they could to support us through it all. I then left and went to my partner’s work and broke the news to him. In disbelief all we could do was hold each other and cry. Neither one of us knew how to process such awfulness. I left there after some time and went home where I sat down and talked to my nephew. Since both of his parents have been deceased for some time I am more like a father to him. He did not take the news well at all. It opened up all the old emotional wounds of his mother having died of lung cancer. The news left him emotionally wrought and he has been unable to adequately deal with it in the months since. I started chemo and immunotherapy in May and will have to continue the treatments until told otherwise. My last scans showed the cancer hasn’t shrunk nor grown and we are thankful for that. However, side effects from treatment have left me very sick some days and very fatigued other days. Over several months and through palliative care the doctors have managed to get my side effects under control and I am physically doing a lot better. Unfortunately I have days that I deal with a lot of depression and anger because of how cancer has changed my life and the lives of people I love. I have friends that were supportive at first but then have gradually slipped away until I no longer see them. I have family members I am close to that I hardly ever hear from anymore. My family that has stuck around and my own partner treat me like I am going to drop dead any minute as they are constantly buying me things or trying to do too much for me. Don’t get me wrong I appreciate the love and concern but it is as though they have already dug my grave and are prepared to put me in it. But the biggest blow came from my own nephew who broke down one night crying saying over and over “everyone I love dies.” My heart broke in pieces over that. Things were so hard for him that he left October 1st to go live with his brother in another state. I miss him so much as he was here with me every day while my partner works so now I am home alone all day. I truly miss his company and have been so depressed over him leaving. I hate this cancer and what it does to all of us that have it, and the caretakers and loved ones that have to deal with it. I know cancer isn’t easy for any of those involved and I know some folks have a much harder path than I have had. It breaks my heart especially to see the children that are suffering with this wretched disease. I don’t mean to sound like I am complaining because God has truly blessed me and continues to, but this is the hardest road I have ever been on in my life because of the emotional aspects and believe me my life wasn’t easy from the beginning. I just needed to sit down and type this out because I can’t really share any of these feelings with people I know. I have always been the strong one that people come to and now I am not so strong anymore. May God bless all of you that reads this and know my heart goes out to you and your loved ones for your cancer journey.
    8 points
  43. Banana

    Covid

    Hi Everyone. I just wanted to report that my Dad came back home after a week and has been doing ok. Covid remained asymptomatic and he was treated for his other issues (low wbc and colitis). He got well enough for doctors to start him back on his Chemo treatment this past week. Praying this cycle will be a lot smoother than the last. Thank you for helping me remain calm.
    8 points
  44. GaryG

    I HATE THIS CANCER!!!

    Glad to see you join us. You certainly had your share of disappointments and bad surprises like many of us but were very good at describing them and getting them of your chest. I have a unique experience because I was a care taker of my first wife who died of colon cancer after 2 1/2 year battle. During that period I was completely ignored by some of my best friends and family members. I am also a lung cancer patient and have been for 7 months. I learned a lot from my first encounter with cancer. I can see both sides of your story. We can get emotional. We can be disappointed. We can lose faith. We can feel sorry for ourselves but there is one very truth that never goes away. We must first and foremost beat cancer. Our emotions, goals and efforts must all go toward surviving because without surviving nothing else matters. The best thing that happened to me is joining this group. It put life in perspective for me and I found friends I never thought I had. I can complain, vent, ask questions and most of all get inspired each time I feel weak. I look up to many survivors here and say if they had the courage and wisdom to beat cancer so can I. So my friend I invite you to do the same. Make it a mission to get better and concentrate first on beating cancer. We are here to help. I wish you the best.
    8 points
  45. biker90

    Remission - finally

    I had surgery and chemo for lung cancer in 2008. in 2017 an MRI found a brain met. After open surgery and two gamma knife procedures I had a clean MRI this past March. So I am clean and good to go till next March 2021. Thanks to all of you who offer support.
    8 points
  46. Hi again, Tegan, One more thing: I do think these forums are a pretty nonjudgmental place. Regardless of race, religion, politics, sexual orientation, personal history or whatever else, we're all iin this together. Cancer is a great leveler. We're here to support you, so say or ask whatever you want.\ Bridget O
    8 points
  47. I was diagnosed in July 2013 at age 67 with NSCLC-adenocarcinoma, with mets to my liver. At the time, there were only a few mutations that were known; my testing revealed that I had none of them (ALF, EGFR, KRAS negative). I was started on chemotherapy - carboplatin, Avastin, and Alimta. After 16 months, a new tumor was detected and I was declared chemo-resistant. At that time, there were no FDA-approved immunotherapy treatments, so I was shown several clinical trials to review and discuss with my oncologist. The trial that we selected was a phase 1 combination of MEDI4736 (now known as durvalumab or Imfinzi) and tremelimumab. Unfortunately (as there was significant reduction in tumor size), I was able to stay in that trial for only 7 months due to side effects. Within a few months, I was accepted into another trial (phase 1, oral drug code named PBF-509), which I have been in since January 2016 with no side effects other than fatigue, and stable since January 2017.
    8 points
  48. Judi L

    Judi L

    Thank you all for your welcoming messages. I wanted to respond to each of you directly but have not yet figured out how to do that. I’m new to blogs/forums so it’s a guessing game right now. I’m not even sure if I used the right icon to “like” each reply. My cancer was inoperable bc there were 4 tumors of varying sizes which had totally collapsed my lung...they were so intertwined that they couldn’t even be measured accurately. The diagnosis seemed to come out of nowhere...a long story. I opted for an aggressive treatment (SWAG) of chemo and radiation, simultaneously over an 8 week period...5 days/week. I’d lost my brother, mother-in-law and a few friends to LC so I wasn’t playing around. Looking back, I got through those 8 weeks like an out of body experience. I don’t think I broke down until they were over and every now and then I’ll get a flashback and wonder if that was really me needing to use my knuckle to turn on the microwave bc my finger wasn’t strong enough. One month after SWAG I began what was to be one year of immunotherapy infusions, every 3 weeks. One year turned into 2 and now I’m in year 3. They can continue as long as the cancer remains stable, my body tolerates the treatments and insurance covers it. So far, so good. After my initial treatment, the tumors shrunk dramatically although not as much as the Drs had hoped for and there were lots of complications along the way. I have radiation induced pneumonitis in one lung which has closed the bronchial tube. I developed a severe infection in a cavity that formed where a tumor had been...it took 3 months of mega doses of antibiotics for that to clear. Next came a met brain tumor...talk about scary. Gamma Knife Surgery ( not actually surgery) and a month of heavy duty steroids took care of that. Next was a pulmonary embolism...apparently fairly common with LC. After a few months on Xarelto it shrunk, only to be followed by the discovery of another brain tumor....much smaller though since I was having MRIs every other month. So...another Gamma procedure. The great news is that my brain has been clear since May 2019! There have been other minor speed bumps along the way, mostly effects of medications. WHY AM I TELLING YOU ALL THIS????? To encourage every one that there is SO much hope and to never give that up! I never imagined ever going through all this and being able to say that I’m doing well....a different kind of “well” than before but well nonetheless. I will admit that Covid has me more freaked out than the cancer. My heart goes out to Lisa not being able to see her son! I can’t wait for the day when I can hug my kids and grandchildren again. I’m fortunate to see them....outdoors, masked and 6’ apart...but in person. As the numbers go down and others are out and about, I’m even more fearful. We live at the shore so there’s an influx of people for the summer months and I won’t go near the beach or boardwalk which I’ve always loved. Home has become the only place I feel safe. NJ is definitely in a better place than many other states right now but I fear getting complacent. The stakes are too high with such damaged lungs. All of you get that for sure!! It’s crazy how I rarely talk about my “situation” and found myself rambling on to people I’ve never met. I apologize if I bored you all! Be well!
    8 points
  49. Steff

    Keytruda, 1 year later

    Hi friends, I have a great update on my mom...get your happy dance shoes on! After being on a "treatment break" from Keytruda since October, she received her first CT results since the break - NO evidence of active disease! She will remain on a "treatment break" as long as she continues with no active disease. Although I was not surprised to hear this, it's always a time to celebrate how far she has come. It's a positive reminder how celebrating life's day-to-day activities is important. Unfortunately, dealing with lung cancer and it's side effects are a day-to-day activity, so spending time to celebrate is important to us. While she does not have evidence of active disease, she does have evidence of scar growth in her trachea (where the tumor was). The "junk" in her lungs that is being called pneumonitis has gotten much better. So by the looks of her CT, she should be breathing much better. With the growing scar in her trachea, it could be closing off enough to cause her shortness of breath, so we will pursue that option at her next pulmonologist appointment in a few weeks. Here is also an important update on where she is at for side effects from Keytruda and some of what we learned yesterday: -My mom is still having trouble from the areas that are inflamed in her GI area. She has weaned herself down to 20 milligrams of prednisone with her doctor's urging. She attempted 10 milligrams, but was too nauseous. She continues to wake up at about 2am with severe stomach cramping. She takes her prednisone and it calms down within an hour. If the pain continues and she can't wean herself off of the prednisone her doc will take a look to see if anything else is going on. -Her bad rash is nearly gone (probably due to the help of steroids) -She began to have trouble with her vision. We both assumed it was a new side effect from an overactive immune system. Her oncologist is 99% positive that it is due to the prednisone. She already had an appointment with her ophthalmologist scheduled, so she will look into this issue a bit more with him. For those of you reading this and are still reeling from the trauma of a lung cancer diagnosis, I hope you can take the message of HOPE from this post. While my mom has been put through a lot of the past 3 years, she is winning. She is still strong, she still smiles everyday, and she is still doing the things she loves. And we are taking a break from all of the stress in our life and travelling to Idaho to see Elton John on Friday (going to concerts is our thing 😊). And while I will be bawling because this is supposedly his farewell tour, I will also be celebrating that my mom is here to see it and can cry with me! Take Care, Steff
    8 points
  50. Mally

    Mally

    Well I'm over the moon with scan results showing all clear and blood test excellent too so opdivo is doing a good job with me and it was my 19th infusion today and I've been helping my immune system even more by eating a whole food plant based diet and feel really good ...my emotional health I thank all of you on here for your uplifting positive support since I started my journey October 2016....xxx
    8 points
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