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Curt

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  1. Like
    Curt reacted to Susan4 in I’m so happy I found you all!   
    Thank you Michelle and Curt for your encouragement.  I replied individually to each of you last night. But for some reason I cannot see my replies.  It sounds like both of you have an amazing attitude!  Your determination is inspiring! I will take your advice about trying not to compare what I can do now to what I could do before.  That comparing has brought me to tears and ended up discouraging me each time I’ve attempted a running plan since last March.  It’s that “reminder” you mentioned Curt.  And yes, it stings.  I have to say that one year later, I ONLY get that reminder when I am doing vigorous exercise.  I feel perfectly normal during typical daily activities.  So yes, there is hope!  I bet you’ll both be out there very soon rowing and biking, and enjoying everything you love doing. Persistence, perseverance & patience!  💪🏼🚣🏼‍♂️🚴🏽‍♂️🏃🏽‍♀️
  2. Like
    Curt got a reaction from Rower Michelle in I’m so happy I found you all!   
    Michelle I also had very high lung capacity.  I use to swim laps a lot when I was in college and my early 20’s.  I am at about 75% of my preop capacity.  The doctor said I won’t see my full potential recovery for up to a year and it would be 80-90%.  I’m determined to do better and quicker than that.  I may even take up swimming again.   
    I do practice breathing through my nose.  In through the the nose out through the mouth.  I have no idea where that was drilled into me but it was over the years.  Probably from the various sports I played.  I find it easier to control my normal breathing that way.  I still have a weird tickle in my throat that makes me gulp on occasion.  It’s really uncomfortable and embarrassing.  Breathing through my nose helps control that.  
  3. Like
    Curt got a reaction from LouT in I’m so happy I found you all!   
    Hi Susan.  I’m three weeks post op from an Upper Right lobe lobectomy.  I’m glad to hear you are doing well a year later.  It gives me hope. The day after the surgery the hospital told me I had to walk a mile a day if I wanted to go home.  I did that religiously while there.  Since home I’ve been doing 30 minutes on the treadmill (it’s too cold to be outside) slowly increasing my walking speed and incline.  I’m up to a mile and a quarter in 30 minutes on a slight incline.  It’s a long way from a 7 minute mile but who cares.   It’s more about how I feel afterwards, not how far or fast I went.  One bonus to having lower lung capacity is that you can get your heart rate going with less effort.  Higher heart rate equals more cardiovascular exercise, with less effort.  That’s the math I’m using anyway.
    I’m not sure if you feel this way but when I exercise it is a pretty strong reminder of the fact that I had cancer and lost a part of my body because of it.  That reminder stings.  I’m hoping it lessens with time but I can imagine a lot of frustration comes with those reminders.  I’m choosing to not focus on the why I’m not able to do what I use to and focus more on how much improvement I’m  able to achieve now.  I’m focused on recovering from the surgery and improving.  I’m obsessed with the spirometer and getting as close to my preop lung capacity as possible.   I hope I can keep up that perspective long term.  I’d like to get back in a Montauk bike this summer   
    Lungevity has some endurance events you may want to look into when you feel ready.   https://lungevity.org/events/team-lungevity-endurance-events
    Its awesome you are interested in getting back into running.  Go with how you feel during and after running, that’s what’s most important.  Not how far or fast you go.  
  4. Like
    Curt got a reaction from Roz in I’m so happy I found you all!   
    Hi Susan.  I’m three weeks post op from an Upper Right lobe lobectomy.  I’m glad to hear you are doing well a year later.  It gives me hope. The day after the surgery the hospital told me I had to walk a mile a day if I wanted to go home.  I did that religiously while there.  Since home I’ve been doing 30 minutes on the treadmill (it’s too cold to be outside) slowly increasing my walking speed and incline.  I’m up to a mile and a quarter in 30 minutes on a slight incline.  It’s a long way from a 7 minute mile but who cares.   It’s more about how I feel afterwards, not how far or fast I went.  One bonus to having lower lung capacity is that you can get your heart rate going with less effort.  Higher heart rate equals more cardiovascular exercise, with less effort.  That’s the math I’m using anyway.
    I’m not sure if you feel this way but when I exercise it is a pretty strong reminder of the fact that I had cancer and lost a part of my body because of it.  That reminder stings.  I’m hoping it lessens with time but I can imagine a lot of frustration comes with those reminders.  I’m choosing to not focus on the why I’m not able to do what I use to and focus more on how much improvement I’m  able to achieve now.  I’m focused on recovering from the surgery and improving.  I’m obsessed with the spirometer and getting as close to my preop lung capacity as possible.   I hope I can keep up that perspective long term.  I’d like to get back in a Montauk bike this summer   
    Lungevity has some endurance events you may want to look into when you feel ready.   https://lungevity.org/events/team-lungevity-endurance-events
    Its awesome you are interested in getting back into running.  Go with how you feel during and after running, that’s what’s most important.  Not how far or fast you go.  
  5. Like
    Curt got a reaction from PaulaC in I’m so happy I found you all!   
    Hi Susan.  I’m three weeks post op from an Upper Right lobe lobectomy.  I’m glad to hear you are doing well a year later.  It gives me hope. The day after the surgery the hospital told me I had to walk a mile a day if I wanted to go home.  I did that religiously while there.  Since home I’ve been doing 30 minutes on the treadmill (it’s too cold to be outside) slowly increasing my walking speed and incline.  I’m up to a mile and a quarter in 30 minutes on a slight incline.  It’s a long way from a 7 minute mile but who cares.   It’s more about how I feel afterwards, not how far or fast I went.  One bonus to having lower lung capacity is that you can get your heart rate going with less effort.  Higher heart rate equals more cardiovascular exercise, with less effort.  That’s the math I’m using anyway.
    I’m not sure if you feel this way but when I exercise it is a pretty strong reminder of the fact that I had cancer and lost a part of my body because of it.  That reminder stings.  I’m hoping it lessens with time but I can imagine a lot of frustration comes with those reminders.  I’m choosing to not focus on the why I’m not able to do what I use to and focus more on how much improvement I’m  able to achieve now.  I’m focused on recovering from the surgery and improving.  I’m obsessed with the spirometer and getting as close to my preop lung capacity as possible.   I hope I can keep up that perspective long term.  I’d like to get back in a Montauk bike this summer   
    Lungevity has some endurance events you may want to look into when you feel ready.   https://lungevity.org/events/team-lungevity-endurance-events
    Its awesome you are interested in getting back into running.  Go with how you feel during and after running, that’s what’s most important.  Not how far or fast you go.  
  6. Like
    Curt reacted to Rower Michelle in I’m so happy I found you all!   
    Hi Susan
    Welcome to our group!  I was a competitive rower before my diagnosis.  I would wake up at 4:30am be on the lake by 5:45am to watch the sun rise & bald eagles eat breakfast.  I rowed 10-12k in the am, ran 5k at lunch.  
    My doc thinks in about a year I’ll be able to manage longer distances.  I’m slowly working back to 2k.  
    Persistance, perseverance & patience is my framework.   I have learned to accept that I can not compare my split times to my pre-cancer diagnosis.  I set a new baseline & work from there.  Listen to your body- if you’re tired rest. 
    From my perspective- a little bit of rowing is better than no rowing.  As for the 5k run- bleh- never could get the runners high so I don’t miss that part.  
    I think the key is to keep your legs strong. You might want to try the boring recumbent bike (we also have recumbent trikes we found on Craig’s list)   Short intervals could also work for you.  Try walking for 5 minutes & running for 2-3 minutes then build.  
    There are lots of peeps who return to their sport after the LC diagnosis.  You will too! 
    Michelle
     
     
  7. 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.
     
     
     
  8. Like
    Curt got a reaction from Rower Michelle in Dana Farber INHERIT EGFR T790 Study   
    Thank you Michelle.  EMail sent.  
  9. Like
    Curt reacted to Rower Michelle in Dana Farber INHERIT EGFR T790 Study   
    This is an Addario Foundation trial. Why not try contacting them directly?  Here is the contact info:
    Kim Parham RN BSN
    Senior Manager Patient Navigation & Clinical Program Development
    650-779-8286 (cell)
    650-598-2857 ext 208 
    [email protected]
  10. Like
    Curt reacted to LexieCat in 3 Week Lobectomy Follow Up Tomorrow   
    My response was pretty brief last night--I was actually in between acts at a Pixies concert (one of my favorites--this is like the fifth or sixth time I've seen them live).  
    So my best advice is: go to concerts (or whatever floats your boat).  Enjoy life.  
    I spend relatively little of my time (apart from my posting on this forum) thinking about my own lung cancer and the possibility of recurrence.  I have a few things in place--for instance, during the open enrollment period after my diagnosis I switched to a health plan that permits out-of-network treatment, just on the off chance things go south at some point and I want to be able to go wherever.  I'm thinking about relocating, and I consider what kind of healthcare would be available if I need it.  But I don't dwell on it, other than for a couple of weeks when I go for my scans.  
    The way I look at it, I am lucky.  I know I have a potential health problem and the means to keep an eye on it before it gets out of hand.  Most people with lung cancer are blissfully unaware until they have symptoms, meaning that the cancer is well-advanced.  I, on the other hand, have gotten a heads-up that I'm at higher risk.  This does NOT mean we are fated to have a recurrence.  There are many lung cancers that are not particularly aggressive.  Look how long yours stayed pretty much the same.  
    I have a feeling that with time, this will sort of fade into the background for you, too.  Scan times are always stressful.  I've never had breast cancer, but my mom died of it, so I get a bit stressed when I go for my annual mammogram.  I had a scare last year in that department, but it turned out to be nothing.  So yeah, going for scans and waiting for results might remain a tense time, but it doesn't last that long for me.  And with each clean scan, I relax a bit more (though I will not take anything for granted).
    I hope you do something to celebrate once you're feeling up to it--you got a new lease on life!
  11. Like
    Curt reacted to Lisa L in 3 Week Lobectomy Follow Up Tomorrow   
    Curt, awesome news, I’m so happy that you found this early and stayed diligent...your story gives me courage that I also have to stay diligent even though I have been trying to just forget it.  I’m sure after a few clear scans it will hopefully get easier for you.  ❤️
    Lisa
  12. Like
    Curt reacted to Tom Galli in 3 Week Lobectomy Follow Up Tomorrow   
    Curt,
    Wonderful news! Scanziety will be easy with your clean surgery in mind but...
    Stay the course.
    Tom
  13. Like
    Curt reacted to LisaA in 3 Week Lobectomy Follow Up Tomorrow   
    Curt, great news on the staging! I hope that you are feeling well and gaining strength! 
  14. Like
    Curt reacted to Rower Michelle in 3 Week Lobectomy Follow Up Tomorrow   
    Curt thanks for sharing.  It’s great news!  I can understand the lingering feeling-this is such hard stuff to deal with.  
    There have been more advances with LC treatment in the last two years than in the last 30 years.  The EGFR driver mutation is one of the best studied with over 900 clinical trials underway.   Even with the remote odds- there are good treatment options with more coming.  
    Hopefully as time passes this experience will have less of an impact over time.  God is good every day!  
    Michelle
     
  15. Like
    Curt reacted to LexieCat in 3 Week Lobectomy Follow Up Tomorrow   
    GREAT news!  Pretty much how I felt. 
  16. Like
    Curt reacted to Golfman in Immunotherapy for SCLC   
    Beginning my second round of chemo today, with Tecentriq being the first injection. No results to share obviously, but wanted to post that the process is continuing. Really liked Rico's post. Maybe ther's hope after all. Keep the faith; golf season is on the horizon.
  17. Like
    Curt got a reaction from Suzanne Gibb 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.
     
     
     
  18. Like
    Curt got a reaction from PaulaC 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.
     
     
     
  19. Like
    Curt reacted to Rower Michelle in 3 Week Lobectomy Follow Up Tomorrow   
    Hoping you have a good appointment tomorrow.   Three weeks has gone by pretty quickly & I’m glad you have not dwelled on this too much.  Will keep you in our prayers. 
    Michelle
  20. Like
    Curt reacted to LexieCat in 3 Week Lobectomy Follow Up Tomorrow   
    Hi, Curt,
    I think the questions you want to ask the surgeon include asking for a copy of the surgical report (mine was about a three page narrative of everything that happened during the surgery) and a copy of the pathology report, what kinds of problems or symptoms you should contact him about, and what kind of followup he recommends.  I'd also ask how you can get in touch if you have questions after you've had a chance to read the reports.  My surgeon referred me to an oncologist on the reasoning that if there were ever a recurrence I would probably be looking at chemo or other drug treatment rather than surgery.  If you're Stage Ia, chemo will not be recommended.  If you're Stage Ib (like I was), you may have the option of chem or no chemo--it's not clear whether chemo helps at that stage (for Ia, I've read that chemo actually does more harm than good).  Either way, you will probably have regular scans to follow up.  
    Do your best to get a good night's sleep.  Everything's looking good so far, so you have every reason to feel hopeful.
  21. Like
    Curt reacted to Road bum in Third round, 2nd Treatment   
    Had my second round of Taxotere Friday and I must say it has been much better this time around. The Doc set me up with some pain meds. and I had the Magic Mouthwash ahead of time. They also increased my steroid intake which has helped a lot with the joint pain.
    Things seem to be looking up. My hair is already falling out, along with my mustache, but that is not a problem. I’m not very vain and I look at the hair loss as one more thing I don’t have to worry about. 
    Thats where I am right now. I hope you all are doing well and my prayers will still be sent out to all of you.
    Ron
  22. Like
    Curt got a reaction from ColleenRae in 1st Post-Op CT Scan Test Results... So Sad   
    Those sound like positive results.  I had the same procedure three weeks ago.  My surgeon DID say that a heart murmur was a possible side affect.  He said it’s rare but it does happen. I was told they often clear up on their own and if they didn’t they could prescribe medication for it.  
     
     
  23. Like
    Curt reacted to Rower Michelle in Starting chemo on Tuesday   
    Oh & I forgot about my broccoli soup recipe-
    3 tbs of olive oil
    4-5 cloves of garlic 
    1 cup chopped sweet onion
    1 bunch of green onions
    1 leek
    1 cup chopped celery
    1/2 head of cauliflower 
    2 large bunches of broccoli 
    Fresh flat leaf parsley
    Fresh Thyme  
    cover with low sodium organic vegetable broth
    cook it up until it’s slight soft & blend it all together.  It freezes well. 
    I have this three times a week. 
    Bon Apetite
     
     
  24. Like
    Curt reacted to Tom Galli in 1st Post-Op CT Scan Test Results... So Sad   
    Colleen,
    I like Lexie’s chacterization: nodule, removed, done, cured. In my case with 4 recurrences, NED is a more precise term. So grab good news anytime you can. 
    To your new heart murmur, why delve into a cause and effect analysis. If you have one, see a cardiologist to confirm and if necessary treat. 
    I see nothing but good news from your consultation. Celebrate!
    Stay the course. 
    Tom
  25. Like
    Curt got a reaction from Suzanne Gibb in Update from Suzanne   
    Suzanne it might help to remember that the anxiousness you feel during your visits is not the same anxiousness others are feeling.  For the doctor it’s their job.  They do it day in and day out.  If it’s a good doctor they want to make sure you are as comfortable as possible.  Making sure you have all the information you need will be important for a good doctor to feel like they are doing the best job they can for you. If you want the doctor to feel good about your visit give them the opportunity to do their job the best way they can.  Allow them to explain things to you and give them feedback.  For volunteers, what they are doing for you is a positive experience for them.  I know that sounds strange that your appointments, which are probably very stressful for you, make them feel good about themselves because they are doing something nice for you.  Allow them to feel that.  You are on a tough road.  There are good people out there who want to help.  The nicest thing you can do for them is allow them to help.  
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