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Curt

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  1. Like
    Curt reacted to Barb1260 in wife diagnosed, don't know where to start   
    It’s always awful to hear this diagnosis in one so young. Hoping that the surgeon referral means all is needed is surgery which is wonderful. I’m north of Atlanta and considered Emory which is the best around here but went with Northside, also highly recommended, because they have outposts near me and my job. Didn’t think I could handle Atlanta traffic on top of it all. I researched Cancer Treatment Centers when this started in December-some of what I read sent up the red flags. Keep us posted. Ask questions here. This place has been great help and inspiration. 
  2. Like
    Curt reacted to Lisa L in Candy Trice   
    Hi Candy, I live in Tulsa Ok.  I have not been diagnosed with LC but I have a nodule  that is being monitored.  I found this site in December and I was a scared terrified wreck and the people on here are so wonderful they make you feel as though you are not alone.  If you are ever in Tulsa you can message me and I would love to have a coffee with you.  Love & Light ❤️
    Lisa
  3. Like
    Curt got a reaction from Rower Michelle in Candy Trice   
    Hi Candy and welcome.  I’m also an EGFR mutant.  Currently NED after a lobectomy.  This group is a great place to find support.  I did a google search and found a support service in OKC through the Integris Health Care System.  I don’t know anything about Integris or this particular group but it may be worth a shot.  Contact info is below   Here is a link https://integrisok.com/locations/specialty-clinic/troy-and-dollie-smith-wellness-center/services/patient-and-support-groups
    Lung Cancer Survivors and Caregivers Network
    Pam Billings, 
    405-748-4674 or 405-414-6907 
    Meets the second Monday of each month at various location 
     
    I also, thanks to @Rower Michelle,  find the Bonnie Addario Foundation Living Room sessions helpful.  They can be watched online.  The next one is the end of May https://www.lungcancerfoundation.org/patients/support/   
     
     
  4. Like
    Curt reacted to LexieCat in Survivorship Conference: Who's going?   
    Hope everyone at the conference has a FANTASTIC time.
    We expect PICS!
  5. Like
    Curt reacted to Rower Michelle in Candy Trice   
    Hi Candy,
    Welcome to your new set of friends!  I’m an ALK mutant taking Alectinib which is very similar to Tarceva & Tagrisso.  I live with the uncertainty of how long my ride is going to be before I need to switch to a new drug too.  Key word here is LIVE.  
    I’m located in the KC Metro.  When I was diagnosed at Stage IV in September, 2018 there were NO support groups for lung cancer survivors.  I am (by ancient history) also a clinical social worker.  I found it so appalling that I started my own group with my awesome team at Kansas University.   With the advances in lung cancer treatment we are now LIVING with a chronic disease.  I wanted a group to help me do that.  
    As an adopted mid-westerner, I sorta consider OKC in my backyard.  Before I was diagnosed, I was a competitive rower making a few trips a year down to OKC Riversport.  You’re more than welcome to come up to our group which is listed at www.turningpointkc.org   (Last page of the calendar).  We meet the second Friday of each month.   There is also a free restorative yoga class (see page 7 of the calendar) immediately following .  The social worker who manages our group is a ROCK STAR.    We are just getting off the ground now with 5 members, two people are EGFR mutants.   KC might be a haul- however we did the drive to OKC for a 4 minute race.  🤪
    If KC is too far, then I could also recommend Facebook, they have a robust EGFR community on line.  
    There’s a number of EGFR peeps in this forum as well.  
    This is a wonderful community where the Beatles “with a little help from my friends” brings on a whole new meaning! 
    Michelle
  6. Like
    Curt reacted to Deb W in Introduction   
    So glad I found this group.  Thanks so much for your advice.  Maybe the reason the surgeon said to follow up with him was because they have a multidisciplinary team that meets weekly and the oncologist is on the team so he/she would be looking at my scans.  Thanks for the warm welcome...thankful to  be on this forum🤗
  7. 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.  
  8. 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.  
  9. 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. 
  10. 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.  
  11. 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. 
  12. 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
  13. 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
     
  14. 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!
  15. 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
  16. 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 !
  17. 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?   
  18. 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.  
  19. 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
  20. Like
    Curt reacted to Rower Michelle in Introduction   
    Rock on my fellow mutant!  Welcome! 
  21. 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 ❤️
  22. 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.  
  23. 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.
  24. 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!
  25. Thanks
    Curt got a reaction from Rower Michelle in Scan Countdown   
    Staying busy.  I like it.  Happy meds help.  
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