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Curt

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  1. Like
    Curt got a reaction from Lisa L in Ugh Scan Time   
    I’m hoping there is no change.  Check in here if you need some distraction.  
  2. Like
    Curt got a reaction from Mally in 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.  
  3. Like
    Curt got a reaction from ColleenRae in Introduction - Isabelle49   
    I can speak from both sides of the equation.  My father was diagnosed with a soft tissue sarcoma when I was around 12.  He didn’t tell me until after he had his leg amputated, he knew for about a year.  I was pretty upset he didn’t.  I told him never to do that again. Fast forward 30 years and he was diagnosed with a stage IV LC. He called me on the way home from the doctor to let me know.  He said he remembered how upset I was when he didn’t tell me when I was 12.  I was glad he did tell me.  It was important to me to be able to help him in any way I could.  
    Now I was just diagnosed with Stage 1 LC 8 weeks ago.  I have a 10, 8 and 6 year old.  We chose to tell them that I had something in my lung that needed to be removed but not use the word cancer.  They haven’t asked for specifics.   I struggled a lot with telling friends, extended family, employees, customers and people I interact with through work.  I’ve found that it does help to share what you are going through in the appropriate moment.  If you choose to share it I’d practice the first few times on close family or friends.  I had to get through a few before I was able to do it without getting upset.  There is definitely  something therapeutic with saying it out loud for me. 
  4. Like
    Curt got a reaction from Karen.athome in Hi, I'm a Stage 4, 3rd time Lung Cancer Survivor since 1998   
    Welcome Karen.  Amazing journey and perspective.  
  5. Like
    Curt got a reaction from Karen.athome in Introduction - Isabelle49   
    I can speak from both sides of the equation.  My father was diagnosed with a soft tissue sarcoma when I was around 12.  He didn’t tell me until after he had his leg amputated, he knew for about a year.  I was pretty upset he didn’t.  I told him never to do that again. Fast forward 30 years and he was diagnosed with a stage IV LC. He called me on the way home from the doctor to let me know.  He said he remembered how upset I was when he didn’t tell me when I was 12.  I was glad he did tell me.  It was important to me to be able to help him in any way I could.  
    Now I was just diagnosed with Stage 1 LC 8 weeks ago.  I have a 10, 8 and 6 year old.  We chose to tell them that I had something in my lung that needed to be removed but not use the word cancer.  They haven’t asked for specifics.   I struggled a lot with telling friends, extended family, employees, customers and people I interact with through work.  I’ve found that it does help to share what you are going through in the appropriate moment.  If you choose to share it I’d practice the first few times on close family or friends.  I had to get through a few before I was able to do it without getting upset.  There is definitely  something therapeutic with saying it out loud for me. 
  6. Like
    Curt reacted to LouT in 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
  7. Like
    Curt reacted to Rower Michelle in 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
     
  8. Like
    Curt reacted to LexieCat in 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!
  9. Thanks
    Curt reacted to Rower Michelle in 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
  10. Thanks
    Curt reacted to Karen.athome in 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 !
  11. Like
    Curt got a reaction from Lisa L in Ugh Scan Time   
    Hang in there @Lisa L.  Glad to hear you’ve been living your life.  How was Hawaii?   
  12. Haha
    Curt got a reaction from Rower Michelle in 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.  
  13. Like
    Curt reacted to Tom Galli in 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
  14. Like
    Curt reacted to Rower Michelle in Introduction   
    Rock on my fellow mutant!  Welcome! 
  15. Like
    Curt reacted to Lisa L in Ugh Scan Time   
    Michelle thank you sweets and I am praying for good results on your upcoming scan...I keep up with all of you.  Curt I’m so glad you are doing well and healing nicely and it was not as bad as we thought it would be, you are an inspiration to me.  Tom my trip to Hawaii was everything, I ate a lot of good seafood, wonderful pineapple and some good wine.  I really took it in you know the waves, beach, smells it was perfect, gonna go back soon. Terry thanks for the advice I think you are so right, last time I had my bloodwork I got on mychart and diagnosed myself and thought welp this it and then my doc said my bloodwork was excellent, this after I spent 2 days on dr. Google.  No matter you all have been such a source of hope and friendship and I will let (as we say in Oklahoma) y’all know. Love and light ❤️
  16. Sad
    Curt got a reaction from Tom Galli in 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.  
  17. Like
    Curt reacted to Renee1215 in Hi, I'm a Stage 4, 3rd time Lung Cancer Survivor since 1998   
    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.
  18. Like
    Curt reacted to Renee1215 in 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!
  19. Thanks
    Curt got a reaction from Rower Michelle in Scan Countdown   
    Staying busy.  I like it.  Happy meds help.  
  20. Like
    Curt reacted to Rower Michelle in Scan Countdown   
    Hello My Friends! 
    Happy Monday.  Wanted to reach out and spool up the prayer posse.  I'm scheduled for the CT Chest Scan and Six Month Brain MRI next Monday.  Totally get that there is no real cure for scanxiety, however, I'm going try.  I've got the happy meds for the MRI,  spa pedi & massage, the usual acupuncture, and Tai Chi booked before results on Friday May 3rd.   At least the time for results won't be too long.   Overall I feel pretty good so not really worried as I'm on the TKI for six months, hoping for a very long ride.   Thanks! 
    Michelle 
  21. Like
    Curt reacted to LouT in My Introduction   
    Thanks Michelle. I've been reading some of your posts on recovery.  I'm not a runner or a rower but I do 4-6 miles 6 days/week and weights 4-5 days/week to try to stay in shape. My years of smoking (I quit over 15 years ago) have stolen some of my capacity (although I have pretty good capacity now) and I'm concerned about how much more I'll lose from a lobectomy, so I'll be watching how you and the others are doing for motivation. I'll also add my progress (when I make some).  😊
  22. Like
    Curt got a reaction from eric byrne in My Introduction   
    Best of luck Lou.  
  23. Like
    Curt got a reaction from LouT in 3 Week Lobectomy Follow Up Tomorrow   
    Staged 1A NSCLC Adenocarcinoma with EGFR exon 19 mutation.   No lymph node involvement.  Surgeon felt all went well.  Did not recommend any  follow up treatment, just CT’s every six months.   Gave me a 10% chance of recurrence.  I still can’t get my head around this all.  I feel incredibly lucky to have found it as early as I did, but also can’t shake the feeling that this is something I will worry over forever.
     
     
     
  24. Like
    Curt got a reaction from Rower Michelle in My Introduction   
    I had my surgery at 4 pm on a Tuesday.  I was up and walking slowly around the hospital wing the next morning.  They had me doing a mile of walking a day.  I went home on Thursday.  Going home will depend on when they can take your chest tube out.  I’ve heard of some people who went home with it in, I had to have it out before they would let me go home.  Walking and doing the breathing exercises speeds that up.   I continued walking in my house every day and doing breathing exercises.  I was told I could drive as soon as I stopped taking the pain meds.  I really needed the pain meds while I was in the hospital.  They helped with the pain but I felt like I was in the clouds and was also concerned about constipation.  I stopped taking oxy on the Saturday after surgery.  I switched to alternating Excedrin and Tylenol.  One side affect of the Tylenol and Excedrin was night sweats.  I would wake up drenched every morning.  I started to only take it as needed and tried to avoid it before bed.  They gave me nerve blocking medicine, Gabapentin, that was supposed to help with the nerve pain.  It looked like the northern lights in my head when I’d close my eyes.  My head also felt like I had a concussion.  I stopped taking that one on the Sunday after surgery.  The nerve pain bothered me, but I found the side affects of the meds worse.  They gave me  stool softeners. Between those, drinking a lot of water and moving around as much as possible I returned to normal bowel function in about a week.  I drove myself to get s haircut the Wednesday the following week after surgery and went into the office for a couple of hours on that Friday.  I was tired after doing almost anything.  I’d wake up, walk, take a shower, Eat breakfast then take a nap.  In the afternoon I’d wake up from my nap, walk, eat lunch, go do something like get a hair cut then take a nap.  It was a tired like I’ve never felt before. The kind of tired where I could fall asleep standing up.  The tired lasted three to four weeks.  The incisions under my arm hurt and had quite a bit of swelling.  I was not able to let my arm rest at my side for almost four weeks.  I carried a small pillow agains my hip and in my hand to keep the weight of my arm off my incision.  I was six weeks out this last Tuesday.  I still have some nerve discomfort, not pain.  I’m  told that could last a long time.  Internally I never experienced much pain with normal breathing.  I was really surprised by that.  It would only hurt if I coughed or sneezed   Sneezing was worse for me.  That small pillow I used under my arm doubled as something to squeeze when I had to cough or sneeze.  At this point I can do both without any pain.  There is a pulling sensation, but no pain.    
    The fact that you exercise a lot will be very helpful with your recovery and ability to regain your lung capacity.  I’m 43 and in average physical health.  I’d call myself dad fit.  I have three young sons and they keep me going.  I was able to max out the spirometer before surgery, 4000ml of lung capacity   I’m back to 3250ml.  I’m laser focused on getting all the way back.  I’m able to do light exercise with no issue.  I walk at a fast pace on the treadmill for a mile and a half.  I play in the yard with the kids and coach their baseball teams.  I do get winded if I elevate my activity to medium/high.  It is harder right now to catch my breath but I expect that to go away soon.  
    I went into my surgery not knowing if I had cancer and if it was going to be a wedge resection (what your are having) or a full lobectomy (what you will have if it is cancer).  I would figure after two weeks I was 60% recovered, four weeks 80% and after six weeks I’m 95%.  Lexi gave some great advice about planning ahead.  Hope for the best results but plan for the worst.  If you aren’t able to drive yourself you may be able to take an Uber with your wife.  Meal prep now so you have a lot of meals ready.  Order in.  Get your bed set up.  Have a chair set up you can sit in when you are tired.  Pay all your bills for May before hand and put yourself in the best position to have time to heal.  
    I completely understand not wanting to concede it’s cancer.  You should hold out hope it’s not.  I came to this site six months before knowing what it was.  It was the only place I could find answers.  If it is benign everyone here will be thrilled for you, if it is cancer everyone here will support you.  It sounds like you are in good health and will breeze through this.  Hopefully it’s just a biopsy.  
  25. Like
    Curt reacted to LouT in My Introduction   
    Let me start by saying Happy Easter, Happy Passover or just Happy Day to my new friends here.

    I just want to let you all know how much your posts (here and in other chains) have helped to keep me focused and calmer during this time.  I'm now 11 days away from my surgery (wedge and likely lobectomy) and, as you all surely know, it can be a trying time.  But all the stories I've seen here have really helped.  I have a Pulmonologist appointment tomorrow and pre-op testing next Tuesday.  I've written out a number of questions for the appointment and what I've read here has helped me to form many of them.

    Once I have the surgery I'll get an update to everyone here.
    LouT
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