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Susanrae

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  1. Like
    Susanrae got a reaction from LouT in Scanziety.   
    Hi Deb, I will be saying extra prayers for a good scan for you.  The anticipation of the scan and waiting for results is SOOOO hard.  You take care now, Susan
  2. Like
    Susanrae got a reaction from Tom Galli in Scanziety.   
    Hi Deb, I will be saying extra prayers for a good scan for you.  The anticipation of the scan and waiting for results is SOOOO hard.  You take care now, Susan
  3. Thanks
    Susanrae got a reaction from Deb W in Scanziety.   
    Hi Deb, I will be saying extra prayers for a good scan for you.  The anticipation of the scan and waiting for results is SOOOO hard.  You take care now, Susan
  4. Like
    Susanrae got a reaction from GaryG in Scanziety.   
    Hi Deb, I will be saying extra prayers for a good scan for you.  The anticipation of the scan and waiting for results is SOOOO hard.  You take care now, Susan
  5. Like
    Susanrae reacted to LouT in Christmas Hope   
    Tom, 
    Like Gary, I want to thank you for the courage you've shown, the vulnerability you allow us to experience and the common sense to keep our head when our emotions are flying out of control.  

    I also thank the rest of my Lungevity Family here for all you've given to me this past 1 1/2+ years.  You've taught me so much and even helped me to prepare me for what may lie ahead.  I wish you all a Merry Christmas and a great 2021 and NED for everybody!
    Lou
  6. Like
    Susanrae reacted to Susan Cornett in Scan results   
    Had my 6 month scan last week - everything is stable - NED! I was, as usual, nervous going into this but especially because this is the longest I've gone between scans. I've now had 7 stable scans over the last 2 years. Now I think I can exhale. 
     
  7. Like
    Susanrae reacted to Tom Galli in Turning 70; diagnosed at 53!   
    My birthday wish for everyone with lung cancer is hope: if I can live, so can you.
    Stay the course.
    Tom
  8. Like
    Susanrae reacted to GaryG in Feeling grateful   
    Grateful is good.
    No matter how bad you think you have it, there is always, always somebody who's got it way, way worse.  Vince Flynn.
  9. Like
    Susanrae got a reaction from catlady91 in Scared....   
    SamGirl50,  We are happy you found our group but sad because you have to be here, as said previously.  I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets.  The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it."  During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis.  Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now.  It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another!  As Lou stated, stay strong and keep us posted.  You take care now, Susan
  10. Like
    Susanrae got a reaction from JamesB in Scared....   
    SamGirl50,  We are happy you found our group but sad because you have to be here, as said previously.  I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets.  The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it."  During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis.  Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now.  It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another!  As Lou stated, stay strong and keep us posted.  You take care now, Susan
  11. Like
    Susanrae got a reaction from LouT in Scared....   
    SamGirl50,  We are happy you found our group but sad because you have to be here, as said previously.  I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets.  The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it."  During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis.  Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now.  It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another!  As Lou stated, stay strong and keep us posted.  You take care now, Susan
  12. Like
    Susanrae got a reaction from Deb W in Scared....   
    SamGirl50,  We are happy you found our group but sad because you have to be here, as said previously.  I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets.  The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it."  During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis.  Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now.  It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another!  As Lou stated, stay strong and keep us posted.  You take care now, Susan
  13. Like
    Susanrae got a reaction from Tom Galli in Scared....   
    SamGirl50,  We are happy you found our group but sad because you have to be here, as said previously.  I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets.  The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it."  During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis.  Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now.  It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another!  As Lou stated, stay strong and keep us posted.  You take care now, Susan
  14. Like
    Susanrae got a reaction from SamGirl50 in Scared....   
    SamGirl50,  We are happy you found our group but sad because you have to be here, as said previously.  I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets.  The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it."  During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis.  Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now.  It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another!  As Lou stated, stay strong and keep us posted.  You take care now, Susan
  15. Like
    Susanrae reacted to Sabacat in Hi! I'm new to the forum.   
    Welcome and thanks so much for sharing your story! Always great to hear about folks doing well as a result of clinical trials. 
  16. Like
    Susanrae reacted to BridgetO in Hi! I'm new to the forum.   
    Hi Buddy and welcome!
    Yes, your story gives real inspiration to try clinical trials! keep us posted on how it's going.
    Bridget O
  17. Like
    Susanrae reacted to Tom Galli in Hi! I'm new to the forum.   
    Welcome Buddy,
    Your trial success is a remarkable story and provides hope for all of us with this horrid disease. Thanks for joining us.
    Stay the course.
    Tom
  18. Like
    Susanrae reacted to GaryG in Hi! I'm new to the forum.   
    Welcome, Wow what a story. Your tenacity and will are very inspiring. Welcome to the forum and thank you for sharing your story. 
  19. Like
    Susanrae reacted to Donna G in Hi! I'm new to the forum.   
    Welcome Ed.  You been in the battle for 7 years!   You also show our crowd how many new treatments are becoming available ! 
    The really good news is YOU ARE STABLE..
    Thanks sharing your trip so far.  Please keep us posted on how you are doing.
     
    Donna  g
  20. Like
    Susanrae reacted to Ed or Buddy Cutler in Hi! I'm new to the forum.   
    I was diagnosed in July 2013 at age 67 with NSCLC-adenocarcinoma, with mets to my liver. At the time, there were only a few mutations that were known; my testing revealed that I had none of them (ALF, EGFR, KRAS negative).  I was started on chemotherapy - carboplatin, Avastin, and Alimta. After 16 months, a new tumor was detected and I was declared chemo-resistant. At that time, there were no FDA-approved immunotherapy treatments, so I was shown several clinical trials to review and discuss with my oncologist. The trial that we selected was a phase 1 combination of MEDI4736 (now known as durvalumab or Imfinzi) and tremelimumab. Unfortunately (as there was significant reduction in tumor size), I was able to stay in that trial for only 7 months due to side effects. Within a few months, I was accepted into another trial (phase 1, oral drug code named PBF-509), which I have been in since January 2016 with no side effects other than fatigue, and stable since January 2017.
  21. Like
    Susanrae got a reaction from Tom Galli in Not great news on PET CT   
    Lexie, Just saw your post, haven't logged in for awhile, and wanted to let you know I am sending positive vibes your way and also empathize with your situation.  You are in our thoughts and prayers,.  Take care now, Susan.
  22. Like
    Susanrae got a reaction from LexieCat in Not great news on PET CT   
    Lexie, Just saw your post, haven't logged in for awhile, and wanted to let you know I am sending positive vibes your way and also empathize with your situation.  You are in our thoughts and prayers,.  Take care now, Susan.
  23. Like
    Susanrae got a reaction from ColleenRae in Not great news on PET CT   
    Lexie, Just saw your post, haven't logged in for awhile, and wanted to let you know I am sending positive vibes your way and also empathize with your situation.  You are in our thoughts and prayers,.  Take care now, Susan.
  24. Like
    Susanrae got a reaction from Rower Michelle in Not great news on PET CT   
    Lexie, Just saw your post, haven't logged in for awhile, and wanted to let you know I am sending positive vibes your way and also empathize with your situation.  You are in our thoughts and prayers,.  Take care now, Susan.
  25. Like
    Susanrae got a reaction from LouT in New to Adenocarcinoma of the lung and new to here   
    Hi Molly,
    Welcome to our group!  This is a great bunch to be involved with to get you through the labyrinth of emotions, etc, etc, of a lung cancer diagnosis.  I am Stage IV NSCLC of the adenocarcinoma variety with brain mets, diagnosed April 2019.  It took me some time to "wrap my arms around" my lung cancer diagnosis and learn to live with it; so make sure to give yourself all the time you need to go through the various phases (crying, anger, etc, etc, etc).  Grant yourself the grace.  
    This group has been a godsend for me.  They DO know how you feel because usually someone out there has experienced or can totally empathize with how and what you are feeling.  I don't post or log in real often but truly appreciate those that do and all of the wisdom and support they offer.  For myself, there are times, especially when medical appointments aren't on my calendar for 2 to 3 weeks, I don't log in much.  I think it is a way for me to have a little "escape" from the cancer world; when I have a lot of appointments it seems to mentally drag me down. I have been very fortunate to feel quite well, except for some fatigue, since my cancer diagnosis.
    This group also has vast medical knowledge to help you navigate the choices for care you might encounter or how to ease some physical side effects and at no charge!
    You will find great support here and we welcome you!  
    Take care,
    Susan
     
     
     
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