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Curt

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  1. Like
    Curt got a reaction from Tom Galli in Had my lobectomy   
    Hi @LyndaT   I had an upper right lobe lobectomy just over a year ago.  Same circumstances as you.  Five days out it still hurt for me too.  It gets better.  Keep waking, doing breathing exercises and resting.   Things will improve for you.   
  2. Like
    Curt reacted to LUNGevityKristin in Let's have a virtual coffee date!   
    Hey everyone, since everything is cancelled/postponed and everyone will be spending more (if not all) time at home, let's pick a time to come on and talk.  I can start a new thread on Mondays and we can decide on a time that works well for everyone to jump on and talk about ANYTHING.  Please let me know what time would work best and what time zone you are in and we can get started next week!
  3. Like
    Curt reacted to TJM in Coronavirus risk   
    Bridget
    My two cents....I wouldn't risk it if it were me. You have survived so much, why expose yourself to more pain and suffering.  Let the younger generation step up for this battle.
    Peace
    Tom
  4. Like
    Curt reacted to Tom Galli in COVID 19 shopping   
    Virus Worries:
    After sixteen years of survival, I still have twice yearly consultations with my medical oncologist and one CT scan every year. At my September consultation, my oncologist told me my high risk medical concern is pneumonia, regardless of cause. He's prescribed 20 doses of Levaquin (750 mg) as an emergency supply of antibiotic that I am to start if my sputum starts to darken. This was done in coordination with my GP. If I start symptoms of chest congestion with darkened sputum, I start the Levaquin and report to my GP or medical oncologist, depending on who I can see soonest.
    I am also up to date on all my vaccinations, including flu, pneumonia, and shingles. I don't have a compromised immune system but with about 30-percent lung capacity, anything I catch that moves to my lungs is dangerous. But, I haven't put my life on hold, and I don't fret about catching the flu or Coronavirus. I do, however, practice some common sense actions that thus far have kept me in the game. These include:
    Steering clear of folks coughing or sneezing Rigorous hand washing Wiping down shopping carts with Lysol wipes Our modern connected world seems to hype everything that happens into a world-ending emergency. Yes, we have global connectivity and participate in a global market, but the US and Canada have vastly different in population densities than far east countries and European cities. We also have a world class CDC that is backed up by the best pathogen research facilities in the world---the Armed Forces Research Institute of Medical Sciences. Both are working hard to identify, track, treat, and develop vaccines for pathogens that pose a threat to the US.
    Here is some interesting data on Coronavirus. How accurate are these statistics? I wouldn't know but the US data as of today shows 103 total cases and 6 deaths. These numbers seem to square with news reports. Review the current statistics on lung cancer, here. I conclude, lung cancer is clearly our primary threat.
    Most of us here choose treatment for our lung cancer. The objective of treatment is to extend lives. How long? I wouldn't know but while in treatment, I worried away my extended life by fretting about recurrence. That amounted to about 3 years of wasted life extension. I don't worry anymore. I try and live in the day, exercise common sense hygiene, and follow my doctors advice. 
    Stay the course.
    Tom
  5. Thanks
    Curt got a reaction from Deb W in One Year Today   
    Happy one year Deb.  Here’s to many, many more.   
  6. Like
    Curt got a reaction from Tom Galli in One Year Today   
    Happy one year Deb.  Here’s to many, many more.   
  7. Like
    Curt got a reaction from May2 in Surgery March 12   
    @LyndaT apparently the French are overly cautious.  What a terrible thing to have happen before your surgery.  I can tell you that is not the norm here in the state’s.  You should plan for as many massages as you want after you recover from surgery.  I had a lot of the same questions you had before surgery.  I was also terrified.  Don’t be.  You have already gotten some good insight and advice. 
     
    I had a VATS surgery exactly (Yes exactly To the date) one year ago today. Robotic surgery has a lot of the same benefits as VATS in terms of it being minimally invasive, having a shorter recovery time and being an affective treatment.  It is preferred for surgery where lymph nodes are involved.   The biggest difference is VATS uses instruments to assist a surgeon where robotic is done more by the robot and assisted by the surgeon.  The biggest reason it’s not done more often is because it is more expensive than VATS (so less hospitals can do it) and less surgeons are trained on it.  It is worth knowing how many of these types of surgeries your surgeon has performed.   If it’s quite a few you should feel pretty good about being able to get it.  I know this in no way feels like you are lucky, but when it comes to how to treat lung cancer you are considered lucky if you can get surgery.    
     
    When I woke up from my VATS surgery I felt great.  No pain at all.  I had the surgery at 7 pm, woke up around 10 pm, went to sleep that night, woke up the next morning, ate some breakfast and went for a walk around the hospital wing.  The walk was a slow gingerly walk but it was a walk.  I was very scared to get too out of breath but was really supposed at how little my breathing had changed.  I felt so good that I let my pain medication laps later that day.   It turns out the pain meds were the reason I was feeling so good.  When I went longer than I should without taking the meds I was in pain.   They got it under control but I got a good talking to from the nurse about letting them know if I was feeling ANY discomfort.   They had to give me some pretty powerful narcotics to knock the pain back.   Once it was back under control I was ok and didn’t neglect to tell them after that.    
     
    The most uncomfortable and painful part is the drain tube that you will have in.  That tube will drain fluid from your chest.  It can be removed as quickly as the following day,  I’ve heard of others going home with it in.  Your chest cavity being clear of air pockets will determine when that happens.  Mine was removed Friday morning, I had surgery Tuesday night at 7 pm.  I went home 6 hours after it was removed.  I was really afraid of getting it removed.  The nurses kept telling me it was nothing but I was still scared.  It turned out to be really minimal.  The sensation is weird, not painful.  I felt almost immediate relief when it was out.  
     
    Coughing and sneezing will hurt.  I carried around a small firm pillow and squeezed it whenever I had to do either.   Coughing is good for your lung recovery.  You’ll need to do it.  I also slept with the pillow so it propped up my arm off my incisions.  
     
    I was exhausted after surgery.  More tired than I’d ever felt before.  I went home on Friday and for Saturday and Sunday I would go from my bed to an arm chair next to my bed.  I’d walk up, have breakfast, walk, sit in the chair for a little bit then go back to bed.   I took a lot of naps the first ten days.  I normally don’t nap.  I was able to go back to work after about two weeks but I would get tired after a few hours and go home.  My energy level was back to normal within a month to six weeks.  Give yourself the time and rest you need to recover.  
     
    I found it comfortable to sleep proppped up.  Either with a firm foam wedge pillow in bed or a recliner.  If you are going to be home alone being in a recliner may make it easier on you.  Getting in and out of bed was hard the first few days.  I’d say if you go home for the weekend have someone there with you the first day or so.   After that you’ll be ok to do normal things.  You won’t be able to lift heavy things for a few months so you’ll need help with laundry and heavy shopping bags.  
     
    I know this is scary.  I was petrified.  I had visions of waking up with a tube down my throat on a ventilator and walking around the rest of my life wheezing and on oxygen.  None of that is even remotely the case.  My breathing is back to pre surgery levels.  I have some numbness around where the tube was.   I’m told that may or may not go away.  When I sneeze it still feels tight.  Overall I feel great and am cancer free one year later.  It was nowhere near as bad as I thought it would be.  You’ll do fine.  
     
    Any other questions...or fears just ask. 
     
      
     
     
     

     

     
     
  8. Like
    Curt reacted to Deb W in One Year Today   
    Dear friends,
    One year ago today I was diagnosed with Stage 1B Adenocarcinoma lung cancer. After my diagnosis, I had an upper left lobectomy on March 22, 2019.  I didn’t have chemo or radiation because as far as they could tell, they were able to get it all out with surgery. Thank you for being such a wonderful support system during this chaotic time in my life.  Lung cancer is not any easy topic to talk about.   This group has been so helpful to me.
    As I began to educate myself on lung cancer, I realized that I was lucky to have been diagnosed at Stage 1b – it was an incidental finding – I had no symptoms.   I’ve had two post surgery CT’s and one looked iffy and I had to go through another PET…but ultimately I was told that at this time there is no evidence of disease – and I am grateful. Like many of you, I wait with anxiety at each 6- month scan.  I’m due for one again in April.
    I’m  contributing to research by participating in studies related to identifying a gene that may have contributed to getting lung cancer.  I had a brother and a sister who passed away from lung cancer at ages 54 and 59 and lost another brother at 52 with a different type of cancer.
     Since my diagnosis I’ve become deeply aware of the fact that life is precious, and I’m becoming really good at doing things now rather than waiting as if I have forever to do what I want to do. It's a good way to live even if you haven't had a cancer diagnosis!  I’ve learned some things too…the importance of recognizing the people who were there for me and telling them how much I appreciate them… and then there were those who disappeared which was painful but still an important lesson.
    Thanks for your wisdom and support.
  9. Like
    Curt reacted to Brenda F in Intro   
    Welcome Wes Turner, My husband has Stage III-C NSCLC. IF I CAN HELP ANSWER ANY OF YOUR QUESTIONS I WILL BE GLAD TO .
  10. Like
    Curt reacted to Tamkow in Surgery March 12   
    I am 64 y/o and had upper right lobectomy via VATS 3/2. I woke up with some upper right shoulder pain (due to the drain tube), but the medical staff immediate took care of that. The drain tube was removed the next day and I was discharged the following day 3/4.  I too live alone and understand your anxiety. I take only Tylenol and ibuprofen for pain. The incisions are annoying, but felt worse with  non cancer related issues. I do my breathing exercise often. I just took a quick walk outside this afternoon. I'm am taking it one day at a time. You'll be fine. Having prep your meals is good idea, but you'll be able to  do lots more. Keep that positive spirit.
  11. Like
    Curt reacted to Terry S in First visit to nodule specialist   
    Hi Scruboak:
    I had the same surgery, lower left lobe, done by VATS on December 16, 2019.  My nodule was also spiculated.  I was staged at NSCLC 1a...the lobe was removed and I have had no further treatment.   After 8 weeks, I felt pretty much back to "normal".  Best wishes for your PET scan.
    Terry
  12. Like
    Curt got a reaction from Kate7617 in Scared   
    @REG Definitely not a death sentence!  You’ve already met plenty of people who are proof of that.  Initial phases before definitive diagnosis are very scary but there are good treatments available and things will settle down once you have a plan in place. Hang in there.
  13. Like
    Curt got a reaction from Tom Galli in First visit to nodule specialist   
    Yes that is the preferred treatment for early stage lung cancer.  There are some other variables.  It’s location, is it localized to just one lobe, etc. They will want to make sure you have sufficient lung function and can handle the surgery but it is the most affective treatment for early stage.  
  14. Like
    Curt got a reaction from Tom Galli in First visit to nodule specialist   
    Hollow @Scruboak   I had an 8mm spiculated nodule in my upper right lobe that we watched for a year.  PET scan was negative but I have a pretty significant family history of lung cancer.  That and the doctor didn’t like the way it looked.  I went in for what was called a wedge resection to just remove the nodule and tissue around it for testing.  They tested it while I was in surgery and it turned out to be NSCLC.  They proceeded with removing the entire lobe (lobectomy).  I have not require any follow up treatment.  I was pretty shook when I was told I should do the surgery, and relieved I was finally doing something about the nodule.  Waiting and watching was stressful.  Surgery was not as bad as I imagined.  I’m a little of a year out from it and doing great. 
  15. Like
    Curt got a reaction from Scruboak in 1 Year Today   
    @Rower Michelle baseball practices started in January 😡 .  I need to start a whole other board for my thoughts on that.   A years has made quite the difference.  Kind of hard to believe it went by as fast it did.  
     
    @Lisa L yours have to be benign.  There is no way both of us are in the minority.  If it weren’t for my family history I’d probably still be watching mine.  
     
     
     
  16. Like
    Curt got a reaction from Scruboak in 1 Year Today   
    Exactly one year post lobectomy and cancer free.  It’s strange how scared I am to write those words for fear that I’m going to “jinx”it.  One year later I still have a little bit of numbness on my side and it still feels tight when I cough and sneeze.  Minor given the circumstances.  I feel grateful for where I am.  I have a follow-up CT scan next month and I’ll be nervous.  Part of my new normal.
  17. Like
    Curt got a reaction from Scruboak in First visit to nodule specialist   
    Hollow @Scruboak   I had an 8mm spiculated nodule in my upper right lobe that we watched for a year.  PET scan was negative but I have a pretty significant family history of lung cancer.  That and the doctor didn’t like the way it looked.  I went in for what was called a wedge resection to just remove the nodule and tissue around it for testing.  They tested it while I was in surgery and it turned out to be NSCLC.  They proceeded with removing the entire lobe (lobectomy).  I have not require any follow up treatment.  I was pretty shook when I was told I should do the surgery, and relieved I was finally doing something about the nodule.  Waiting and watching was stressful.  Surgery was not as bad as I imagined.  I’m a little of a year out from it and doing great. 
  18. Like
    Curt reacted to TJM in Shout out to LUNGevityKristin   
    As some of you may remember my cancer diagnosis was changed after the pathology report on the tumor to being a LCNEC stage IIIA. I have struggled finding much good information, including an oncologist who has extensive experience with large cell.
    So I reached out to Kristin to see if she could help. She came thru like a champ. I don't know if I will find what I am looking for or not, but I do know that I am a lot closer to finding it than before Kristin sent me a couple of great resources to check out. 
    Regardless of the results, I just wanted to recognize your effort Kristin. I owe you a beer...😁
    Peace
    Tom
  19. Like
    Curt got a reaction from REG in Scared   
    @REG Definitely not a death sentence!  You’ve already met plenty of people who are proof of that.  Initial phases before definitive diagnosis are very scary but there are good treatments available and things will settle down once you have a plan in place. Hang in there.
  20. Like
    Curt got a reaction from PaulaC in 1 Year Today   
    Exactly one year post lobectomy and cancer free.  It’s strange how scared I am to write those words for fear that I’m going to “jinx”it.  One year later I still have a little bit of numbness on my side and it still feels tight when I cough and sneeze.  Minor given the circumstances.  I feel grateful for where I am.  I have a follow-up CT scan next month and I’ll be nervous.  Part of my new normal.
  21. Like
    Curt got a reaction from Tom Galli in Scared   
    @REG Definitely not a death sentence!  You’ve already met plenty of people who are proof of that.  Initial phases before definitive diagnosis are very scary but there are good treatments available and things will settle down once you have a plan in place. Hang in there.
  22. Like
    Curt reacted to TJM in Oncology visit   
    Good visit today. I think my oncologist now understands what I am requesting regarding a diagnosis and prognosis for LCNEC. Will see.
    Slight change of plan tho. We all agreed that an IV is better than a pill so since no radiation at the same time as Chemo makes it possible to get all my Chemo via IV. Means I will postpone my first Chemo till Monday. No big deal.
    Great conversation with the Nurse and she is both professional and upbeat. Hard to imagine actually feeling good about life after a visit for Chemo...yet I do.
    I love politics so looking forward tonight to watching the returns. 
    All in all a good day.
    Peace
    Tom
  23. Like
    Curt reacted to Petra in Early confusion   
    Peeps!: Thank you for not saying I shouldn't be here since I haven't yet been diagnosed. I feel the need to prepare myself (my age and history gives me some crappy odds) and I was feeling very anxious. I read a lot of posts on here...you are great folk with amazing stories...awesome good cheer...and more compassion then I have felt in a long time. Thank you. I probably won't post much but will just lurk and read. Happy Valentine's day to a bunch of people who really know the meaning of big heart!!! Special thanks and congrats to the blue toed frog....I mean...the blue toed TOM for his leadership, courage, and amazing tale of survival. Congrats to you all for being survivors and veterans and soldiers!!!
  24. Like
    Curt got a reaction from LouT in Hello from the Forest of WNY   
    Hello and welcome from the island of ENY.   
  25. Like
    Curt got a reaction from May2 in Inflamation/side effects?   
    I haven’t taken Keyruda so I’m not sure of the side affects.  I will say that when you have cancer it feels like all ailments must be because of it.  They should definitely be pursued but hopefully it’s just a cold that will pass.  I had one a few months ago that felt exactly as you describe, though my joint pain was not so bad that I had to ice them.   
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