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Curt

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  1. Like
    Curt reacted to Tom Galli in Nighteen Years!   
    Tomorrow (February 4th) I celebrate 19 years of life after diagnosis with NSCLC, squamous cell. I’m tapping this post out on a small screen while rocking and rolling in the middle of the Caribbean Sea, in route to Cartagena Columbia on our celebratory cruise. WIFI is spotty, thus the early announcement   
    Two points are relevant for our Forum community: celebrate life, and if I can live, so can you. 
    Stay the course. 
    Tom
  2. Like
    Curt got a reaction from Susan Cornett in 3.5 Years Post Lobectomy…Still NED   
    I had my 3.5 year follow up from a RUL Lobectomy.  The .5 was due to the COVID year delays.  The scan was without contrast.  Apparently their is a shortage of that too. Still NED.  Some numbness and muscle spasms on occasion.  No other issues. Lung capacity is back to what it was pre lobectomy.  I don’t visit the site much anymore but was happy to see a lot of familiar names still on here and providing support. I was sad to read of Lexi’s passing. She was very supportive to me during the lead up to and post surgery. I will always be grateful for that.   @Tom Galliyour tribute was beautiful.
  3. Like
    Curt reacted to Rower Michelle in 3.5 Years Post Lobectomy…Still NED   
    Wonderful news!! So great to hear from you.  Hope you are enjoying the boys and baseball this summer!  
    Michelle
  4. Like
    Curt reacted to Tom Galli in 3.5 Years Post Lobectomy…Still NED   
    Great news Curt.
    Stay the course.
    Tom
  5. Like
    Curt reacted to LouT in 3.5 Years Post Lobectomy…Still NED   
    Curt,
    So glad to hear from you again and SUPER GLAD to hear the NED News.  Glad to hear that you are doing so well.  I'll be getting my first annual scans next month and am trying not to think about them until I get them.  Lexie was one in a million and it hit hard when she left us.  I hope we'll hear from you more often, but understand that you are out living the life you fought to keep.  Enjoy my friend.
    Lou
  6. Like
    Curt got a reaction from Judy M2 in 3.5 Years Post Lobectomy…Still NED   
    I had my 3.5 year follow up from a RUL Lobectomy.  The .5 was due to the COVID year delays.  The scan was without contrast.  Apparently their is a shortage of that too. Still NED.  Some numbness and muscle spasms on occasion.  No other issues. Lung capacity is back to what it was pre lobectomy.  I don’t visit the site much anymore but was happy to see a lot of familiar names still on here and providing support. I was sad to read of Lexi’s passing. She was very supportive to me during the lead up to and post surgery. I will always be grateful for that.   @Tom Galliyour tribute was beautiful.
  7. Like
    Curt got a reaction from LouT in 3.5 Years Post Lobectomy…Still NED   
    I had my 3.5 year follow up from a RUL Lobectomy.  The .5 was due to the COVID year delays.  The scan was without contrast.  Apparently their is a shortage of that too. Still NED.  Some numbness and muscle spasms on occasion.  No other issues. Lung capacity is back to what it was pre lobectomy.  I don’t visit the site much anymore but was happy to see a lot of familiar names still on here and providing support. I was sad to read of Lexi’s passing. She was very supportive to me during the lead up to and post surgery. I will always be grateful for that.   @Tom Galliyour tribute was beautiful.
  8. Like
    Curt got a reaction from Tom Galli in 3.5 Years Post Lobectomy…Still NED   
    I had my 3.5 year follow up from a RUL Lobectomy.  The .5 was due to the COVID year delays.  The scan was without contrast.  Apparently their is a shortage of that too. Still NED.  Some numbness and muscle spasms on occasion.  No other issues. Lung capacity is back to what it was pre lobectomy.  I don’t visit the site much anymore but was happy to see a lot of familiar names still on here and providing support. I was sad to read of Lexi’s passing. She was very supportive to me during the lead up to and post surgery. I will always be grateful for that.   @Tom Galliyour tribute was beautiful.
  9. Like
    Curt reacted to AleHondaa in My updates (22 Years old, NSCLC)   
    Hey y’all,
    Happy New Years and happy holidays to everyone here! I want to thank y’all for being a support system that I didn’t think I needed until I tried this out. My latest scans show good results as more shrinking has taken place. Doc even says that it seems my lung is regrowing new and healthy tissue. It also seems that the spots in my back or decayed or dying off. If this keeps up I’m sure to be on a road to a clean bill of health hopefully. I tend to just live day by day appreciating whatever moments I get. I hope everyone else has had good luck in fighting their own battles and if it hasn’t my prayers are out for you to get better or get good news. 
  10. Like
    Curt reacted to LouT in Thoracic Surgery Tips and Tricks   
    Okay, your surgery is scheduled.  This post is meant to provide you with information and tips to prepare for thoracic surgery, what to do in the hospital, and when you return home.  I’m hoping that the information here will alleviate some of your anxiety and fears.
    You can do this; you will get through it!  Be open to the support of family and friends as well as the folks here at Lungevity.  We are here for you.
    Pre-Surgery
    o  Eat healthily, get sleep, and also do some physical activity.  It might just be walking, but the better your body works before surgery, the more quickly it can recover post-surgery.  
    o  Make sure you have someone to count on for your first few days at home.  You'll be tired and likely in some discomfort, so having someone there to assist you when you need it can be a real help. If you live alone and have Medicare, you can ask your doctor for a home nurse to visit, check on your progress, and change dressings.  In-home care also lets you ask questions about your recovery. 
    o  Get a wedge pillow.  It will allow you to sleep in a more comfortable position, take the pressure off your back, and improve your ability to breathe comfortably.  You may also want to keep a small pillow available to press against your body's surgery side when you cough.
    o  Arrange the nightstand with things you may need, so you have them within easy reach.  Remember stretching is something to avoid after surgery.
    o  Make sure to fill your pain prescriptions and take them as recommended.  Once you’re home, you'll need to be active, and it is harder to do to if you’re in pain.  The meds are not a "forever thing," but are necessary to keep you comfortable enough to recover faster.
    o  Have the numbers of your doctors readily available to call if you have questions or experience symptoms that concern you.
    o  Pack your “hospital bag” bringing only the things you’ll need.  Remember, a thoracic procedure requires a post-surgical stay of a few days before being discharged.
    In the Hospital
    o  Show up on time.
    o  On the day of surgery, after the surgery takes place, they will likely have you sit up, stand, or even have you walk to a chair to sit for a bit.  It is important to get you moving and exercise your lungs. Remember the surgeon likely gave you a pain block, so it’s unlikely you’ll feel pain.
    o You should be given a Spirometer (if not, ask for one).  Use it often; it will help to keep your lungs clear and rebuild lung capacity.
    o  TAKE YOUR PAIN MEDS AS INSTRUCTED.  The pain block will wear off within 12-20 hours after surgery, and without the additional pain meds, you will get uncomfortable quickly, so please take the pain meds as prescribed.
    o  The day after surgery, you, your IV’s and chest tube/pump will go for a walk around the ward.  Do not be an overachiever; do what is required and practice slow deep breathing when exercising.
    o  If you miss bathing, the nurse can provide towelettes as a substitute.
    o  Once you are stable, if your lung is not leaking air, and your body is properly absorbing post-surgery fluids, you’ll be set up for discharge.  They’ll remove the chest tube, IV’s, and other paraphernalia they’ve attached, and you’ll be ready to go home.
    Home Post-Surgery
    o  Have a plan to exercise. It should be walking; at first around your house and later outside (sunshine and fresh air are excellent tonics).  But take it easy--this is not a sprint but a long race that you will win with each increasing step over time. 
    o  Continue to use your spirometer; it is your best friend for increasing lung strength and function. 
    o  You will be sent you home with pain meds.  Take them as prescribed until pain is diminished.  Pain restricts exercise and prolongs healing. 
    o  REST WHEN YOU FEEL TIRED.  Sorry for the caps, but this is important. You've had major surgery and need time to heal, adjust to changes, and adapt to old activities.  Be kind to yourself and give yourself grace until you’re strong enough to manage your new normal.
    o  If you have any symptoms that concern you contact your doctor asap.  For example, some people may hear/feel gurgling when breathing while it may be nothing it might be a condition (subcutaneous emphysema) that your doctor should be aware of. It can often resolve on its own, but keeping the doctor updated is a wise choice. 
    o  When you're feeling up to it, update us on our forum. Let us know how you're doing and ask any questions.  We're here for you!
    Recovery differs for everyone; in my case it was about 6 weeks before I was almost back to routine activities after my Lobectomy. Please stop into the forum if you have questions.  A good group of people will be there for you.
  11. Like
    Curt reacted to DFK in Durvalumab   
    Happy Friday to All,
    February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕
    Questions I had for Oncologist
    1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.

    R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 
    2) What now? 
     
    R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
     
    Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.
    I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 
    Thank you everyone for your support. 
    Take care, DFK
     
  12. Like
    Curt got a reaction from Kate7617 in Mom newly diagnosed with Stage IV NSCLC   
    Hello.  I am sorry to hear about your mom’s diagnosis.  Lung cancer is a disease that grows quietly and is often discovered because of symptoms unrelated to the lungs.  It is usually a huge shock.  I am also a “mutant” with a Stage 1 NSCLC Adenocarcinoma with an EGFR Exon 19 deletion.   Like Lexi mine was caught early enough and was able to be treated with surgery.  I won’t have any follow up treatment.  The EGFR exon 20 mutation is one of the rarer mutations.   I do believe that the current TKI treatments, which Tagrisso is one, have been found to be ineffective with the exon 20 mutation.  I do believe there is a new TKI drug being developed called TAS6417.  This is all information you should consult with your doctor on.  Like Michelle said, research and treatments are moving quickly.  I found this link on TAS6417  https://www.biospace.com/article/releases/taiho-pharmaceutical-and-cullinan-oncology-establish-collaboration-to-develop-tas6417-novel-egfr-tyrosine-kinase-inhibitor/
    I’m glad you found this site (but sorry you had to), check back with questions and updates when you need to.
  13. Like
    Curt reacted to Opal in Durvalumab   
    DFK, you must be counting the days by now. I know I did. Time seems to fly except when you want it to. Just think, 2 weeks from now at this time Durva will be behind you. Congrats on a mission well accomplished.
    I vote you and Rower get together and  take your knowledge, encouragement and gift you both seem to have to help others with your words, and travel the world, or at least across the States, cheering others like us on.  
    Giving thanks,
    Opal
  14. Like
    Curt reacted to DFK in Durvalumab   
    Dear dear Opal, 
    What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder.
    As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. 
    As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along.
    Take Care, DFK
     
  15. Like
    Curt reacted to Barb1260 in Durvalumab   
    Merry Christmas and happy new year to my fellow Durvas. May 2020 bring us all to NED if not there already!!!  🎄
  16. Like
    Curt reacted to D iane in Small Cell Diagnosis   
    Hi.  Just dropping by to wish everyone a Happy Holiday!!!  Under a week away for the Big Man!  We aren't planning much.  
    I am happy to report that husband's 2nd cycle was uneventful.  Once again, though, the joint pain from the Neulasta shot knocks him down for a day at least.   I had a cold and was nervous he would get it but he did not.  So far so good.  He does have abdominal pain off an on which is a pain to figure out.  Is it cancer?  constipation?  something else?  At least today it is very mild and he is actually out working.
    Next up is the 26th going for labs and a check up.  If all is well 3rd cycle will start on the 30th.
     
  17. Like
    Curt reacted to Barb1260 in Durvalumab   
    CT results compared to a year ago-from 6.8x5.8 to 2.8x1.9cm. The 5mm found in Sept on left lung is now 2mm. Nothing new.  I guess this expensive stuff is working. Happy Holidays!!!!
  18. Like
    Curt reacted to Barb1260 in Durvalumab   
    Hey!  Are all us Durvas feeling so good we’re running around doing holiday preps? No posts for a solid week. I’m going to take that as a good thing!!🥳
  19. Like
    Curt reacted to D iane in Small Cell Diagnosis   
    Good morning.  We had a wonderful Thanksgiving and holiday weekend with friends and family.  
    Husband is doing pretty well.  He is eating good and he/we have figured out his abdominal pain is more from constipation than disease.  Once we took care of that he is feeling much better.  He has gained a couple of pounds back!  The heartburn has also resolved.
    Yesterday he had a port placed which went well. He also had an oncology appt. His labs are better than last week so 2nd cycle is scheduled to begin Monday.
    Some more good news.  No evidence of metastatic disease was found via brain MRI he had on Tuesday!!  👍
    Here's hoping all goes well with this round.  There's still going to be some trial and error involved, I just hope since we both understand a little more, it will help us stay ahead of any side effects.
  20. Like
    Curt reacted to D iane in Small Cell Diagnosis   
    There has been no mention of genetic markers.  I asked the pulm. about receptors and if that's how they treat this cancer on Day 1 since I saw nothing of the sort on the pathology report from biopsy.  They just threw the stain on the samples and said Yep, small cell.    He asked what I did, like did I have a medical back round.  As with anyone diagnosed with any type of cancer, you want to know all there is to know about it.  You're always looking for an answer as to why your body's cells start going stupid!  You're always looking for a way to out smart it from coming back or controlling metastatic disease.
    At this time, I am just grateful they are treating him and still holding out hope that this treatment will work for a period of time.  I won't hit the floor until: 1-He either gets too sick from these treatments, or 2- He makes it thru but the scans show bad results.
    The Neulasta shot has kicked his butt.  He's very achy and sleepy.  He is taking Claritin, advil, Tylenol.  I've been keeping bottled water around.  It seems he will drink it since it's right in front of him whether in the living room or bedroom.  I even put one in his van should he venture out.  My daughter took a sick day today and is at home with him.   What a great help!  I trust she will get some nourishment into him today.
    We thought we would have a quiet week next week, but after Dr. visit yesterday , he was instructed to have labs done on Wed. and he is going to have a port put in.  Consult with surgeon is on Tues.  We are on schedule to have that done before next cycle.  
    Thank you.  🙂
  21. Like
    Curt got a reaction from Tom Galli in Small Cell Diagnosis   
    @D iane the journal is a great idea!  Sounds like you are being a great support for your husband.  Please be sure that you are also caring for yourself during this time.  It’s very easy to forget that.  Cancer treatment is a marathon and you’ll need to be healthy to be able to continue to be a support to him.  It is very easy to get swept up in the patient/caregiver roles right now.  Make some time to put that aside and be husband/wife.  Both will be important to help you both through this.  I hope he gets good PET scan results today.  
  22. Like
    Curt got a reaction from DFK in Durvalumab   
    I got the flu shot.  I was warned I may feel some mild symptoms shortly after.  
  23. Like
    Curt got a reaction from DFK in Durvalumab   
    First I’d like to say that this topic and everyone on it is inspiring.  850+ posts and still going.  You are all amazing!
     
    I read this article in the Times today.  Seems relevant to @Rower Michelle post.https://www.nytimes.com/2019/10/24/well/eat/fiber-and-yogurt-tied-to-lower-lung-cancer-risk.html
    I dug a little deeper and found this article as well.  https://www.medpagetoday.com/hematologyoncology/lungcancer/82933

    I was briefly in to making my own Kefir.  I may get back into it.  It’s an amazing source of natural probiotics.  
  24. Like
    Curt got a reaction from Barb1260 in Durvalumab   
    I got the flu shot.  I was warned I may feel some mild symptoms shortly after.  
  25. Like
    Curt got a reaction from Charles in Durvalumab   
    First I’d like to say that this topic and everyone on it is inspiring.  850+ posts and still going.  You are all amazing!
     
    I read this article in the Times today.  Seems relevant to @Rower Michelle post.https://www.nytimes.com/2019/10/24/well/eat/fiber-and-yogurt-tied-to-lower-lung-cancer-risk.html
    I dug a little deeper and found this article as well.  https://www.medpagetoday.com/hematologyoncology/lungcancer/82933

    I was briefly in to making my own Kefir.  I may get back into it.  It’s an amazing source of natural probiotics.  
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