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Curt

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  1. Like
    Curt got a reaction from Roz in Tumor not gone after Chemo/Radiation   
    Hi Net.  I’m sorry to hear about your moms diagnosis.  I went through something similar with my dad years ago and am going through my own cancer diagnosis now.  I was frustrated with the lack of communications from the doctors on what the goal of treatment was for my dad.  He was stage 4 when he was diagnosed.  I’ve come to learn now that the name of the game is to stop progression, prolong life and try and get to NED (no evidence of disease).  The word cure is not often used with progressed stage NSCLC.  It’s not that it isn’t possible, but advanced cancer treatment can be tricky.  Terms like NED (No Evidence of Disease), CFS (Cancer Free Survival), NSP (No Sign of Progression) , DFS (Disease Free Survival) and others are often used.  You should ask the doctors what results they would consider to be a positive outcome with any treatment they prescribe.  Some treatment regiments are intended to fight back the disease to improve quality of life, some are meant to prolong life.  Some have curative intent.  Just stopping the disease from progressing is a positive outcome.  There are a bunch of people on here who have had positive results with immunotherapy treatment.   
  2. Like
    Curt reacted to Steff in Wedding bells   
    After being "official" for nearly 17 years, buying a house, and having 2 cats, my "partner in crime" and I finally decided to take the plunge.  A shotgun wedding seems to be the fittest way to describe it - we made the decision Thursday night and got married on Saturday.  Our families knew, but we went ourselves since it was only a 5 minute ceremony.  Luckily, the Idaho border is only a few hours away, where we were able to get our marriage license and be married all in the same day. We got 3 photos, here's one of them. Hopefully it gives you a good laugh or smile.  Have a great day!!!

  3. Like
    Curt reacted to joysea50 in Post op   
    Thank you, all! I am so happy this forum was available to me. I will be praying special words to Our Lord for your continued recovery.
    Blessings,
    Joyce
  4. Like
    Curt got a reaction from Tom Galli in Post op   
    AMAZING Joyce.   Great results.  I get feeling like it can’t be, but it can.  The last thing my surgeon said to me before I went under was that he didn’t think it would be cancer.  I wasn’t that lucky, but I’m really happy you were. 
  5. Like
    Curt got a reaction from Roz in Post op   
    Hi Kinsbourgh.  I had a right upper lobe lobectomy on February 26.  It was done via VATS.  They get you up and walking in the hospital the day of or the day after.  The big milestone is getting your chest tube removed.  That provided a lot of relief for me and was when I was allowed to go home.  One thing I learned the hard way is to keep up with your pain medication.  I felt pretty good after my surgery and let my pain medication wear off without saying anything to the nurses.  Turns out I was feeling pretty good because the pain medication works.  It took a little while to get the pain back under control.  The nurses were not happy with me.  Mine was removed and I was discharged from the hospital after three days.  Once home I spent three or four days going from my bed to an arm chair next to my bed.  I found that a wedge pillow was helpful while I was in bed and that carrying a small pillow under my arm was helpful with keeping my arm off my incisions on my right side.  It also helped to squeeze it when I had to cough, sneeze or hiccup.  All three of those hurt, coughing is good for recuperation though.  I walked a lot before and after surgery.  I used the spirometer breathing device a lot as well.  It was a week before I stopped pain meds and just used Tylenol, two weeks before I was up and moving around, three before I went back to work for a few hours a day and four before going back full time.  Fatigue was a big thing for me.  I was really surprised with how tired I was.  I’d never felt that level of fatigue before.  I had a lump/tickle in my throat that made me cough for a few months.  I thought it would never go away but it did.  Ricola helped while I had it.  I do still have some muscular pain in my right chest when I cough, but it’s not bad and aim sure it will go away.  Generally I had visions of being handicapped by this surgery.  Always being out of breath and not being able to do the things I’d done before.  It takes a while but I’ve gotten back to it all.  I coach my kids baseball teams, play sports with them, swim laps in the pool, run, bike all without issues.  My lung capacity is back to where it was prior to surgery.  It is a slow recovery, takes time and some effort but you do recover.  What I imagined and the reality were very different.  It is not as bad as you are imagining.  If you work at it you will recover and be back doing the things you do now within a few months, unless you run marathons.  You may not run any marathons for a while.  Hang in there.  You’ll get through it.  Post any questions or concerns here.  
  6. Like
    Curt got a reaction from Lisa L in VATS Surgery After non malignant biopsy   
    I had an 8mm nodule discovered by accident and watched it for a year with no change and no PET activity.  I have a family history of lung cancer and it was a spiculated nodule.  After a year of no changes the doctor recommended having a lobectomy.  I was floored.  I was feeling really good about the no changes.   When I received the first recommendation for surgery the doctor used the term lobectomy.  I couldn’t understand why they would recommend a full lobectomy without knowing it was cancer.  I went for a second opinion and the doctor said that he would do a wedge resection to see if it was cancerous, if it was he would continue with the full lobectomy at that time.  I followed up with the first doctor and was told that was what they were recommending, they just didn’t describe it well.  I decided to go with the second doctor. The nodule turned out to be cancerous and I had the full lobectomy about six months ago.
    Watching it for changes is a perfectly reasonable approach in my opinion.  I was a bit more aggressive because of a significant family history and the fact that I was told it would be a very minor or no quality of life difference for me to have surgery.    
    Most nodules are not cancerous but things like family history, spiculated, ground glass, female, former smoker and multiple nodules increases the concern.   
    Recovery from a lobectomy is different for everyone.  It is not fun but many are able to make full recoveries with little to no quality of life differences.  I have in six months.  How far you can recover depends on your age, physical health and pre/post surgery routines.  
    I hope you are one of the majority of people who have nodules on your lungs that are nothing.  Know that if you are of the unlucky minority of us that it is cancer that there are treatment options and this community is here to help get you through it. 
  7. Like
    Curt got a reaction from LouT in Got a call on my first scan result   
    Good stuff Lou.  Hearing I don’t have cancer anymore doesn’t elicit nearly the same level of joy as the level of fear and remorse elicited from hearing I did.  I know I should be happy, but I’d describe it best as relief...then I take a nap.  Here’s to more clear scans, and other things to be happy about.  
  8. Like
    Curt reacted to LouT in Got a call on my first scan result   
    Folks,
    As you all know I had my first scan on Monday and was prepared to wait until my doctor appointment next Thursday for the results, but I got a call early this morning from his office to tell me the results and they were "Stable"... okay...what does that mean!?  I asked the woman and she explained that after my surgery they did a CT and found NED and this scan continued to indicate NED.  You can imagine my relief as I had never heard Stable before regarding a scan.  I thought I'd be jumping up and down happy, but that wasn't my reaction.  Don't get me wrong, I was very happy, but I think my anxiety had been higher than even I knew it was so I just felt exhausted.  Luckily that didn't last too long and the rest of the day was pretty joyous.  The woman told me that they would do another scan in a year and I'm sure I misheard her because originally I was told every 6 months for the first 2 years and then annual after that.  I'll get that clarified next week, but I thank you all for the wonderful support and feeling of family I have here and for your prayers.
    Lou
  9. Like
    Curt reacted to Pattymac in VATS Surgery After non malignant biopsy   
    Hi all, just wanted to let you all know that I am the topic of this discussion, my daughter (littlemissbags55) is my hero, always searching for the right thing to do with my situation! I can’t even tell you all how this has impacted my life, yours too for sure, but I am so greatful that so many of you on this forum have responded to her, I thank you from the bottom of my heart! God bless you all! Obviously, as my second opinion said, I will be scanned for many years, unless there is a change in the nodule on ct scan! Then off to surgery, probably!!
  10. Like
    Curt reacted to LouT in Going for First Post-Op Scan Today   
    Thanks Curt.  We'll have to track each other's progress since we had our surgery pretty close together.  Are you still walking and doing the coaching (yes, I think you can include that in your exercise)?  I really like getting the test on the same day as the office visit.  I'll try to get my next one closer.  I know they'll post it to My Atrium (our healthcare site) account before my office visit, but I won't read it.  Last time I did that I thought I was dying and the doctor had a good laugh and explained what all the "findings" were...this time I'll wait to hear directly from the horse's mouth.
    Stay well buddy,
    Lou
  11. Like
    Curt got a reaction from Irka in Surgery recovery going well, but auto accident sets me back   
    Uber and Lyft for rides.  I long for the day I don’t have to own a car anymore. I’m glad you are on the mend Irka.  
  12. Like
    Curt got a reaction from Irka in progression and update   
    Amgen has some positive results for KRAS mutations.  https://www.amgen.com/media/news-releases/2019/06/amgen-announces-first-clinical-data-evaluating-novel-investigational-krasg12c-inhibitor-amg-510-at-asco-2019/
  13. Like
    Curt got a reaction from LouT in Going for First Post-Op Scan Today   
    Hey Lou.  I’m glad to hear you are doing well.  I guess scans are something we have to get use to.  I was pleasantly surprised when I went  for mine that they read it and had my doctor consultation during the same visit.  That was an XRay, I don’t get a CT scan until September.  I’m hoping it’s the same process.  I also have some discomfort (numbness) on my side.  I’m told it goes away.  Given the whole experience I don’t give it any thought.  Really great advice you’ve given other.  
  14. Like
    Curt reacted to LouT in Going for First Post-Op Scan Today   
    My Update:   Well, this morning I'll be going for my first CT Scan since my surgery back on May 2nd.  Unfortunately, I don't get to see the doctor until next Thursday so there will be a bit of anxiety between now and then.  I'll make sure that my next scan will be closer to the appointment for sure.  Other than this I've been doing well.  My workout schedule is back to where it was.  I do my 5 miles and weights 6 days/week and am handling it pretty well.  I'm not back to my full weights yet, but about 80% there.  I rarely do get winded, although it's happened after some more strenuous workout activities and I seem fine going up and down stairs.  My only complaint is some areas on my ribcage that are still uncomfortable, but i haven't needed to take anything for pain in the last month and a half.  All in all the recovery has been much better than I feared it would be.
    For those of you planning surgery my advice is simple.  Read the forums here, many folks recount their surgical journey and give practical advice for how to maximize recovery and minimize discomfort (both in and out of the hospital).  Stay in the moment whenever possible, I took this advice from my Longevity Family and it saved me from hours of catastrophic thinking and worry.  Yes this is a scary disease and the diagnosis and treatment processes are equally scary, but many folks have proceeded you in this and can share their stories of survival that will inspire you.  Take time to enjoy those you love and the life you have, since nobody has a guarantee of a tomorrow this is the time to savor the gift of time we have been given.  Keep moving and keep breathing, the more you can do for yourself the quicker your recovery will progress.  Do whatever you can, but keep trying and you'll be surprised what you can accomplish.
    Well...once I get results I'll post them here.  I'm thrilled to see the results of others and the good outcomes many have experienced.
    Stay tuned,
    Lou
  15. Like
    Curt reacted to Rower Michelle in The Results are in!   
    All good news to report, before the doc closed the door, he said, everything is looking good.  My brain MRI is normal, the CT shows continued shrinkage, the spinal mets are healing quite nicely.  Docs literal words were "so we stay the course".  
    Next scan in three months, this time, my scheduler has the scan the day before the appointment, so NO WAITING.  Thanks for helping me get through this one.  I still have this ridiculous headache, so Flonase can finally get going.   
    Rowing for me this afternoon!  Woo hoo!   
  16. Like
    Curt got a reaction from LouT in Post op   
    Hi Kinsbourgh.  I had a right upper lobe lobectomy on February 26.  It was done via VATS.  They get you up and walking in the hospital the day of or the day after.  The big milestone is getting your chest tube removed.  That provided a lot of relief for me and was when I was allowed to go home.  One thing I learned the hard way is to keep up with your pain medication.  I felt pretty good after my surgery and let my pain medication wear off without saying anything to the nurses.  Turns out I was feeling pretty good because the pain medication works.  It took a little while to get the pain back under control.  The nurses were not happy with me.  Mine was removed and I was discharged from the hospital after three days.  Once home I spent three or four days going from my bed to an arm chair next to my bed.  I found that a wedge pillow was helpful while I was in bed and that carrying a small pillow under my arm was helpful with keeping my arm off my incisions on my right side.  It also helped to squeeze it when I had to cough, sneeze or hiccup.  All three of those hurt, coughing is good for recuperation though.  I walked a lot before and after surgery.  I used the spirometer breathing device a lot as well.  It was a week before I stopped pain meds and just used Tylenol, two weeks before I was up and moving around, three before I went back to work for a few hours a day and four before going back full time.  Fatigue was a big thing for me.  I was really surprised with how tired I was.  I’d never felt that level of fatigue before.  I had a lump/tickle in my throat that made me cough for a few months.  I thought it would never go away but it did.  Ricola helped while I had it.  I do still have some muscular pain in my right chest when I cough, but it’s not bad and aim sure it will go away.  Generally I had visions of being handicapped by this surgery.  Always being out of breath and not being able to do the things I’d done before.  It takes a while but I’ve gotten back to it all.  I coach my kids baseball teams, play sports with them, swim laps in the pool, run, bike all without issues.  My lung capacity is back to where it was prior to surgery.  It is a slow recovery, takes time and some effort but you do recover.  What I imagined and the reality were very different.  It is not as bad as you are imagining.  If you work at it you will recover and be back doing the things you do now within a few months, unless you run marathons.  You may not run any marathons for a while.  Hang in there.  You’ll get through it.  Post any questions or concerns here.  
  17. Like
    Curt got a reaction from Susanrae in Surgery recovery going well, but auto accident sets me back   
    Uber and Lyft for rides.  I long for the day I don’t have to own a car anymore. I’m glad you are on the mend Irka.  
  18. Like
    Curt got a reaction from PaulaC in Surgery recovery going well, but auto accident sets me back   
    Uber and Lyft for rides.  I long for the day I don’t have to own a car anymore. I’m glad you are on the mend Irka.  
  19. Like
    Curt got a reaction from Deb W in Post op   
    Hi Kinsbourgh.  I had a right upper lobe lobectomy on February 26.  It was done via VATS.  They get you up and walking in the hospital the day of or the day after.  The big milestone is getting your chest tube removed.  That provided a lot of relief for me and was when I was allowed to go home.  One thing I learned the hard way is to keep up with your pain medication.  I felt pretty good after my surgery and let my pain medication wear off without saying anything to the nurses.  Turns out I was feeling pretty good because the pain medication works.  It took a little while to get the pain back under control.  The nurses were not happy with me.  Mine was removed and I was discharged from the hospital after three days.  Once home I spent three or four days going from my bed to an arm chair next to my bed.  I found that a wedge pillow was helpful while I was in bed and that carrying a small pillow under my arm was helpful with keeping my arm off my incisions on my right side.  It also helped to squeeze it when I had to cough, sneeze or hiccup.  All three of those hurt, coughing is good for recuperation though.  I walked a lot before and after surgery.  I used the spirometer breathing device a lot as well.  It was a week before I stopped pain meds and just used Tylenol, two weeks before I was up and moving around, three before I went back to work for a few hours a day and four before going back full time.  Fatigue was a big thing for me.  I was really surprised with how tired I was.  I’d never felt that level of fatigue before.  I had a lump/tickle in my throat that made me cough for a few months.  I thought it would never go away but it did.  Ricola helped while I had it.  I do still have some muscular pain in my right chest when I cough, but it’s not bad and aim sure it will go away.  Generally I had visions of being handicapped by this surgery.  Always being out of breath and not being able to do the things I’d done before.  It takes a while but I’ve gotten back to it all.  I coach my kids baseball teams, play sports with them, swim laps in the pool, run, bike all without issues.  My lung capacity is back to where it was prior to surgery.  It is a slow recovery, takes time and some effort but you do recover.  What I imagined and the reality were very different.  It is not as bad as you are imagining.  If you work at it you will recover and be back doing the things you do now within a few months, unless you run marathons.  You may not run any marathons for a while.  Hang in there.  You’ll get through it.  Post any questions or concerns here.  
  20. Like
    Curt got a reaction from Tom Galli in Surgery recovery going well, but auto accident sets me back   
    Uber and Lyft for rides.  I long for the day I don’t have to own a car anymore. I’m glad you are on the mend Irka.  
  21. Like
    Curt got a reaction from Moonbeam in No Inherited Mutations?   
    I’ll include him in my prayers as well.  
  22. Like
    Curt reacted to MBinOregon in No Inherited Mutations?   
    Hey Curt,
    I have no cancer on either side of my family (the blood related ones, not the in-law kind), but I have a genetic mutation.  I was told this is an "acquired" mutation, not something I was born with.  I'm also a never smoker, so how on earth did I acquire this mutation?  No one knows, but I'm told my mutation is very common among female, non-smoker, young-ish people, so apparently it's trendy for folks like me, so I must've figured, oh yes, I'll take it! 😉😜
    Enjoy your weekend!
    MB
  23. Like
    Curt reacted to Moonbeam in No Inherited Mutations?   
    Curt - my husband doesn’t have any genetic mutations as well. He’s just had a metastatic recurrence and I have requested, which they were going to do, his new samples from his latest bronchoscopy/EBUS procedure re-tested. I’ve been doing a lot of research on course of action with no genetic mutations and there are some immunotherapy drugs out there that hopefully he will respond to. That is our new prayer! 
  24. Like
    Curt reacted to Tom Galli in Surgery recovery going well, but auto accident sets me back   
    Irka,
    One step forward and two back is at least movement and movement is life. Keep on moving. Driving is overrated with nightmarish traffic.
    Stay the course.
    Tom
  25. Like
    Curt reacted to LouT in Post op   
    Kinsborough,
    Welcome to the forum.  Sorry you need to be here, but glad you found us.  My situation is not too different from Curt's (including not taking my pain meds, so be vigilant and take them as prescribed).  In my case I had a lobectomy (VAT's) of the lower-right lung on May 2nd of this year.  Well, it's almost three months now and I am back to doing 5 miles/day on my treadmill along with a pretty good weight workout afterward.  I do notice some changes, but I had already been diagnosed with mild COPD (Gold, Level A, which indicates small impact and little chance of worsening) so I do sometimes feel a difference, but that seems to be diminishing over time.  I will say that for the first 5-6 weeks I had times when I needed to lay down and take a nap or just rest after doing anything strenuous.  I don't feel that need anymore and the most lingering thing I have is areas around my rib cage where I have numbness, occasional burning feeling, pain and/or some combination of the three.  My doctor had already told me to expect some of that and that it would take extra time (up to months) for all of that to go away.  Otherwise I feel very good.  I go for my first follow up scan in August (fingers crossed) and then a scan every six months for the first two years.  If no recurrence then it will move to an annual scan. 
    Hang in there and you may be surprised that the surgery is not as terrible as you expect it to be (that was my case).  Take your time recovering and stay as active as you can without overdoing it.  
    Let us know how it goes once you are able and I'll keep you in my prayers.
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