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  1. 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
  2. MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS Step 1 – Invest in sophisticated diagnosics before diagnosis If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, n
    11 points
  3. LexieCat

    Cheer me up

    It's 2020, so...
    11 points
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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 a
    10 points
  10. 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 c
    9 points
  11. 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
    9 points
  12. 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
    9 points
  13. 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 a
    9 points
  14. 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
    9 points
  15. There's a game on Sunday?
    9 points
  16. 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 f
    9 points
  17. 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
  18. 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 ca
    9 points
  19. 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
    9 points
  20. 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 leve
    9 points
  21. 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
  22. Hi, and welcome. I'm a Stage IV cancer survivor/patient, and haven't had much problem at all with chemo. Surgery is never indicated for Stage IV, but there are a lot of very effective treatments--including chemo, radiation, targeted therapy, and immunotherapy. There are people on this site who have lived 15-20 years from their advanced cancer diagnosis. So the point is, he won't necessarily suffer much, if at all, from his chemo. The exact treatment will depend on the results of those tests he's getting. Lung cancer is serious--no doubt about it--but it isn't hopeless the way it onc
    8 points
  23. 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 hi
    8 points
  24. Jennedy

    Family Response

    @islandgirls i was diagnosed in June 2020 with Stage IV adenocarcinoma with mets to my right clavicle. I started with a targeted medication, Tagrisso, but it didn't work for me. I have since started on chemotherapy Carboplatin, alimta, Keytruda. Before those meds are started I get an IV of steroids and Zofran to help with side effects. Everyone is amazed that I am doing as well as I am. I have had very little nausea. I am tired. I'm not myself. But I am here and feeling pretty darn good. I can enjoy time with my daughters, grand daughters, friends, siblings, mother and husband. My daughters
    8 points
  25. Hi Curry, I just wanted to pop in to say welcome to our group. I'm sorry you had to find us. I was also diagnosed as stage IV NSCLC. Mine was Squamous Cell which is a little less common than Adenocarcinoma. I was very lucky in a couple of ways during my journey. First off I went to a local Oncologist?Hematologist that I was referred to by my PCP. He is brilliant and an out of the box thinking guy which I love. Finding my Dr was my first lucky break. I also had an 80% PDL-1 score so Keytruda was in the mix for me. A high PDL-1 score was my second lucky break. After 2 years of chemotherapy,
    8 points
  26. 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) s
    8 points
  27. I’m in recovery and it’s mostly going smoothly. I’ll be wearing a mini chest pump for a few days but it’s fine. Pathology is back early as well and it was a strange but benign finding of “infarcted fat”. I want to thank everyone for all your great advice, including the surgical recovery tips, and wish each of you the best on your cancer survivor journeys. ❤️❤️❤️
    8 points
  28. TJM

    I wish..

    I wish to see my Sons married. I wish to see my pup grow old. I wish to outlast COVID. I wish to have a nice dinner with my wife at a nice restaurant. I wish to invite 50 friends over for a BBQ. I wish to go see a football game in a full stadium. I wish to take a cruise I wish to visit foreign countries. I wish all of you have a great holiday season. Peace Tom
    8 points
  29. 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
    8 points
  30. 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
  31. 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 fai
    8 points
  32. She's in recovery now. So healing has began!
    8 points
  33. 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
  34. 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
  35. 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 durva
    8 points
  36. 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 perio
    8 points
  37. Susan Cornett

    5 Years!

    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. Looking forward to marking next year's cancerversary with all of you.
    7 points
  38. Deb W

    Brain MRI

    Thanks so much for your well wishes! I did get the results and there are no mets to the brain! I can't even describe the relief I feel today! The Tabrecta should be delivered today. Thanks again everyone. Deb
    7 points
  39. Shella677

    Introducing myself

    In a selfish sort of way it’s nice to hear from people that are in the same boat as me. All my adult life I have been scared to death of something happening to my children, never did I think I would be the one causing them to go through something at such a young age. This is the hardest part for me so far. They are unaware at this time so I may reach out when it’s time to tell them whenever that is for advice. I will fight, and Waiting to see what it is I’m going to be fighting is the hardest part as mentioned. Sorry for the rambles, I will update more once I have more info and I’m su
    7 points
  40. LouT

    Family Response

    Islandgirls, You've gotten some great input from the group and I agree with all of them. Early in my diagnosis I had no idea if my treatment would be surgery, chemo, radiation or a combo of all three. I did speak with my children and my one adult daughter "spoke for the group" when she said, "if you die we'll kill you". That was all I needed to hear. The patient is the one who makes the decision and the family can choose to support them or not. But, I'm sure your boyfriend's daughter wants her dad to be with her. If she doesn't want to see him suffer, she certainly wouldn't want to
    7 points
  41. Hi Curry, My apologies for the belated welcome. We can all relate to the gut punching phone call upon receiving this dreadful news. I was 51 and a "healthy" competitive athlete that spent months in and out of multiple PCP offices before getting properly diagnosed. You've receive a lot of great advice here. I also had a broken rib from the cough spasms, and bone mets. That was 2 1/2 years ago, today, my cancer is No Evidence of Disease (new way of saying remission). Filing for short term disability, then long term disability for me, worked out very well. My employer had a gen
    7 points
  42. Dear Curry, My heart goes out to you and everyone who is diagnosed with Stage IV NSCLC (even hard to hear it in your case because you are so young). Sadly, Lung Cancer can strike anyone at any age and more and more of the newly diagnosed patients are young and healthy with no know risk factors. If you have lung you can get Lung Cancer. I can tell you that I am a Stage IV survivor and will be celebrating my 6th Cancerversary in March of 2021. if you lock on my icon/name you can read my story. I had a very grim outlook, but I'm doing well and as of my last scan I am now NED (N
    7 points
  43. We are spending gobs of money on COVID research. The pandemic death toll in the US just passed 400,000 souls and that is bad. Or is it? Saying something is bad begs a point of comparison: as in bad compared to what? Let's say deaths from lung cancer. According to the National Institute of Health (NIH), 152,977 perished from lung cancer in FY 2020. Well that is certainty less than COVID deaths but COVID has been killing for only 1 year. Lung cancer has been killing forever. Hopefully a COVID vaccine will take hold and arrest the death rate. I wonder what arrests the lung cancer death rate.
    7 points
  44. Dec 9 Wednesday This will be a short update. I thought it was surprising how quickly symptoms increased in the 2 weeks the oncologist gave us to decide on if we want to continue treatment. Because of thanksgiving holidays, all the infusions that would have happened the second half of that week got scheduled to the week after so dad had to wait another week to yesterday to get the new chemo. Towards the end of the wait, his cough came back and he got new aches in his back. For Sunday and Monday, saying more than 2 sentences would trigger some coughs. However, his cough is gone
    7 points
  45. Hello and Welcome To your new family here where it is safe to say anything. You’ve elegantly articulated what almost everyone here has experienced to one degree or another. The loss of a support system is quite common however no one really ever talks about it. I had a similar experience and what I’ve done over the course of the last two years is rebuild my support network starting with a Lungevity Life Line Buddy. The phone buddy is a great resource who really understands. Another face to face resource is our Zoom Meet Ups https://lungevity.org/for-patients-caregivers/support
    7 points
  46. Claudia

    Happy Thanksgiving

    Hi Everyone. I hope you all had a peaceful Thanksgiving. I realize that sometimes it's hard to find things to be thankful for. I am thankful for all of you, all your knowledge, your uplifting words and your speaking truth to power. I want to thank everyone who helped me through my journey. I am still recovering from surgery and last week my husband's gall bladder threw a fit and had to be taken out so we are recouping together. I hope you all can find something to be thankful for. Gratitude is a wonderful thing. Peace, light and great scans to all, Claudia
    7 points
  47. Patrick Star

    Upcoming lobectomy

    Thanks Judy, Gary and Lou! I’ll be glad when the morning gets here and we can get this show on the road. The waiting seems to be the worst part for me. Another hour and it’s bed time. Getting up at 7 and heading to the hospital at 9. Surgery is scheduled for noon. As soon as I can and my heads on straight I’ll let ya all know how it went. Thanks again for all your encouragement! Patrick
    7 points
  48. TJM

    Freinds

    Cut me some slack as I am feeling somewhat mauldin. But you spend a lifetime investing in friendship. And now that investment is paying dividends for me in spades. I am blessed to have so many caring friends. None more precious than my wife and kids. I know. Way too sentimental for an Engineer. Dont care The freinds I have made on this board are even more special. Y'all dont know me from Adam yet you have accepted me into the fold. Like I said. Cut me some slack. I'll go back to being a hardass soon enough Peace Tom
    7 points
  49. Tom Galli

    Scream Screening!

    November is our month. We need to add something to our advocacy agenda--low dose screening. We know that lung cancer found early is lung cancer treated successfully and extended life. Low dose CT scans find lung cancer early. But, did you know that only about 2%* of people eligible for low dose screening actually get screened? Only 2-percent! If you are on this forum, you understand the devastation of late-stage diagnosis. You are living the treatment mayhem. We need to rise up as a community and scream "Get Screened". We need to move the dismal 2% number dramatically. Early finds mean ea
    7 points
  50. Lisa Haines

    Covid and me

    https://lungevity.org/news-blogs/blogs/living-with-lung-cancer-during-covid-19-0 Thanks Lungevity for sharing my story
    7 points
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