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Showing content with the highest reputation since 03/22/2019 in all areas

  1. 6 points
    I was 44 when I was first diagnosed with NON SMALL CELL Lung Cancer in my left lung it was 1998. It was a year after my Dad passed with the same thing. Everything changed..within 3 months. Business closed, husband left and I was looking at Thoracic Surgery. I knew then I was stronger than I ever thought possible. I wasn't diagnosed again until 2014 when I had a second Lobectomy on the left lung. Six months after my Sister passed from the same thing. In 2016 it was back in the lung and spread. I was given massive Radiation on my Pericardium and also had RFA-Radiofrequency Ablation on my lung. I was told I had less than 6 mths. Me being me..fought and got a Medical Onc...who suggested a new treatment that may give me a year at the outside. I had been on 6 Clinical Trials and this would be my lucky 7th. I believe in being a piece of the cure....try what you can ..maybe someday in the future something will work to irradiate Cancer for good. It is now 2019...I've been on Keytruda for about a year and a half. The tumours on my Pericardium and heart are no longer there and the tumours in my lungs have shrunk considerably. I still have Kidney and Uterus to be concerned about but...all in all.....I think there may be something to this. Next month it will be 21 years and 3 lung cancer diagnoses....I think its a mixture of Research and Moxie, Guinea Pigs are tough animals and I'm proud to be one..
  2. 6 points
    Renee1215

    Introduction

    Hi! My name is Renee and I was diagnosed with Stage 4 nsclc in August 2017. I'm glad to have found this site as I've already gained information and read many inspiring stories. I was originally given a very poor prognosis...months to live. It has now been over a year and a half and I've been cancer free for about 8 months now. I feel as if I'm lucky because, as my friend Michelle says, I'm a mutant. I expressed a high level of PDL-1 and was almost immediately put on Keytruda. To me this is a wonder drug. I've thankfully had no side effects, other than some tiredness, and my response has been good. I live in Kansas City and feel that I have doctors I can literally trust with my life. I'm a huge dog fan, and have four of my own. I'm married with no children, but numerous nephews and nieces. I just recently returned from Washington D.C. where I was a "lung force hero" representing Kansas as the American Lung Association advocated with congresspeople to increase funding for NIH, and to ensure that reasonable insurance with protections for pre-existing conditions remain in place. I had a bad experience with the sleazy insurance policy I had when first diagnosed, and I've benefited from all of the research and trials that led to treatment of lung cancer patients with Keytruda. Some of the ALA people said I was a poster child for advocacy day. I came home with some new friends, and lots of good memories. I hope to be an active participant on this forum, and hope to be able to share and learn much from others. Thank you for letting me be a member!
  3. 4 points
    We are "locked and loaded" for our fifth Transatlantic cruise since I was diagnosed with lung cancer. This Sunday, we depart from Ft. Lauderdale and fifteen leisurely pamper-filled days later, arrive in Southampton, England. Along the voyage, we'll visit Bermuda (a first), the Azores (an other first), Lisbon (been there), Bilbao, Spain (a first), and Le Harve, France (been there). And best of all -- no jet lag! We are serious cruisers and are thrilled to cross the pond in a brand new ship (Celebrity Edge christened in Dec 2018). Once we arrive in Southampton, we'll pick up a rent-a-car and proceed to get lost driving on the wrong side of the road as we explore England's picturesque Cotswalds region. We really do love getting lost in countries where we can almost understand the language! Then, after a week of land touring, we fly back home to usher in our summer. Vacations are important for everyone; they are vital for lung cancer survivors. I find I need about 7 days of state change that removes me from day-to-day life and stress. On the eight day, I float in a mental sea of serenity and on this trip, I do hope for calm seas throughout our voyage. Stay the course...we will! Tom
  4. 4 points
    Hi Karen! I'm new to this site myself and still have to introduce myself. But, I was excited to read you story and wanted to respond. You are one encouraging woman. I was diagnosed in August 2017 with Stage 4 NSCLC. I'm also a Keytruda patient and have been cancer free now for about 8 months. It's a good feeling and I agree that this immunotherapy is amazing. I was originally given a few months too, then my genetics results came in and I'm almost 100% PDL1 positive. Thanks for sharing your amazing story. I believe in research and am relying on future findings to get me through to being a long term survivor like you.
  5. 2 points
    LexieCat

    Introduction - Isabelle49

    Hi, Isabelle, I've got a slightly different take on it. At this point, you haven't been officially diagnosed. Maybe, rather than getting everyone alarmed, you could wait until you've been diagnosed and know for sure what you are dealing with. When you say, "large mass," how large is it? The one nodule in the left lobe might be nothing. The majority of nodules are not cancer. A PET scan should be able to indicate the likelihood of any metastasis. What I'm trying to say is that assuming the "large mass" is cancerous, it might be possible to have a surgical removal that will have little impact on your life--that was the case for me and several others here. Granted, my tumor was not very large, but if yours is confined to the one lobe, surgical removal is not very complicated. I had my upper left lobe removed almost two years ago and I'm fine--I do go for regular scans to be sure it stays that way, but right now it's looking good. When I was told that I had probable lung cancer, I shared the information on sort of a "need-to-know" basis. My close family knew but I didn't tell my elderly dad because he would have worried literally for the rest of his life. He wasn't nearby and I didn't see any point in upsetting him. My kids and a few other close family knew, as well as the people I worked with and a few other colleagues/friends. If I'd had a more serious diagnosis and would be undergoing chemo or radiation treatments, then probably a few other people would have to be told. I think it's a very individual thing. My point is that if you wait till your diagnosis is more certain, you might be able to give your family the news within the context of having some idea about what the game plan will be. If there's no metastasis and you're a candidate for surgery, that is very reassuring news. Even if it has spread, though, or surgery is not an option, there are a lot of people here with positive treatment results, so you can present the news in the context of, "Yes, I have cancer and it's not great news, but there are effective treatments, so there's hope." Bottom line, do whatever feels right to you. Every person, family, and cancer is different. Glad you found us--hope you are able to enjoy your trip!
  6. 2 points
    Rower Michelle

    Introduction - Isabelle49

    Hi Isabelle- When I was diagnosed, a nurse strongly recommended sharing my diagnosis with people as soon as possible as there will never be a “good time”to share this news. Yes my friends and family were totally devastated by the surprise diagnosis however we’re adapting to the new normal. We received support from the least expected places. This is a marathon you will need a strong support system in place to carry you through the rough patches, uncertainty, & celebrations. Keep us posted, Michelle
  7. 1 point
    Tom Galli

    Introduction - Isabelle49

    Isabelle, I'm not sure I have anything to share on telling family and friends about your diagnosis. Lexie makes a good point: you don't have one yet! I'd at least wait till you did because so many other questions become answerable once a diagnosis is determined. A reveal now might needlessly heighten uncertainty and lung cancer is already uncertain enough. I do like your priorities: travel first then complete diagnosis. I wish I held that attitude when I was in the diagnosis and treatment zones. I put my life on hold and ended up wasting 3 years fretting about lung cancer. I'd forgotten the purpose for treatment is extended life and I was wasting my extension! You are not and I say well done! Stay the course. Tom
  8. 1 point
    PaulaC

    Cursin' On a Sunday Afternoon....

    Tom, I forgot to tell you to have a great time and enjoy for all of us. 😁
  9. 1 point
    LouT

    Introduction - Isabelle49

    I have two daughters as well and I wondered about telling them about my situation, but my wife told me that they'd be pretty angry to have to hear about it later so I did share with them. In my case, while it was a shock to them, they're very supportive and I find that very comforting. Each family is different, so you need to decide for yours, but their strength may surprised you. Lou
  10. 1 point
    Isabelle that’s a terrible way to treat any patient and yes I would push for another doctor. I’m not a doctor but have to wonder way she was so upset you were waiting a couple of weeks. Did she say? It all seems so harsh. Enjoy your trip and based on my experience nothing moves quick when it comes to testing, results and treatment.
  11. 1 point
    PaulaC

    Cursin' On a Sunday Afternoon....

    My husband and I fellow cruisers and for us it’s just being on the ship. I’d love to to a transatlantic cruise one day. We missed cruising last year with the cancer stuff but won’t miss again. Have fun and enjoy!!🛳
  12. 1 point
    Karen.athome

    First Post Lobectomy Cold

    Green Tea.....I don't know how it works...but, nothing works better for the lungs after a lobectomy...I've had two...and each time...it was Green Tea that was my miracle...The real stuff … if you have an Asian Store close by....can't hurt to try it. Cheers ! …..and just to let you know...it does get better !
  13. 1 point
    Steff

    Introduction

    Hooray Renee! Thanks for advocating with our lawmakers and thanks for being a thriving cancer warrior! Glad to hear Keytruda has kept your lung cancer at bay, it has helped so many people, including my mom. Happy you have found us! Take Care, Steff
  14. 1 point
    Curt

    First Post Lobectomy Cold

    Thank you for the advice @Rower Michelle My mother is a fellow tree hugger. I’m all set up with oils and spraying Thieves in the back of my throat.
  15. 1 point
    Rower Michelle

    First Post Lobectomy Cold

    Hi Curt- Wow- given the odds I’m surprised you made it this far without the creeping crud. At the risk of sounding like a tree hugging hippie- you might want to consider diffusing essential oils at night. DoTerra makes something called On Guard. We added some Frankensence with orange oil in the evening. My cousin also uses this with reported good results. We have a nurse at the clinic that runs classes which she believes is vital for the immune system. Either that or a simple humidifier will help plus lots of green tea. Get well soon!! Michelle
  16. 1 point
    Lisa L

    Cursin' On a Sunday Afternoon....

    Yay Tom, I’m with you sweets I am a traveling fool and nothing is going to stop that. This is an exciting trip. Hope you have a blast and keep us posted.
  17. 1 point
    LouT

    My Introduction

    It sure isn't offensive to me, thanks. I pray for the folks I've met here as well. Lou
  18. 1 point
    Isabelle49

    My Introduction

    Hoping this is not offensive to anyone, but for LouT: I will keep you in my prayers.
  19. 1 point
    Tom Galli

    First Post Lobectomy Cold

    Curt, Musinex is a good approach and I use it also. I'm very happy to learn that coughing is not painful. Stay the course. Tom
  20. 1 point
    Rower Michelle

    Introduction

    Rock on my fellow mutant! Welcome!
  21. 0 points
    My first interaction with the pulmonologist did not go well at all. She was very aggressive, kept referring to “your cancer”. I have only had one CT and no biopsy yet. She was very annoyed that I wanted to put off the biopsy for a week or two for a trip to Europe, told me I would probably be dead by November (granddaughter’s wedding), if I don’t die on the trip from a blood clot. As an RN, I felt she was completely off the wall and disrespectful. I have asked to be assigned to another pulmonologist. I never have and would never address a patient as she has addressed me. Thanks.
  22. 0 points
    Curt

    First Post Lobectomy Cold

    I’m almost 8 weeks out from an upper right lobe lobectomy. I’ve been terrified of getting any kind of repository infections or colds. Unfortunately I caught a cold. Three young kids and a teacher wife, my days were numbered. I have to say as with a lot of this experience it’s not as bad as I was worrying it would be. I’ve got a lot of sinus congestion and tons of coughing from a post nasal drip. Lungs are generally clear. The coughing hurts a little, but just a little more than it would normally. All the coughing actually feels like it is strengthening my lungs (looking for the positive). I’ve taken some musinex but stayed away from the cough suppressants I want to make sue I’m coughing up anything getting into my lungs. I’m adding colds to the list of things that didn’t change much after surgery for me. They suck just as bad as they did before surgery.
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