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Susanrae

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  1. Like
    Susanrae got a reaction from Lisa B in Hello! Introducing myself.   
    Hi Lisa, 
    Good to hear from you!  I am stage IV adenocarcinoma with right lung involvement and a true Minnesotan.  Good luck to you on your scans!  Take care now, Susan
  2. Like
    Susanrae got a reaction from Lin wilki in Good scan!!!   
    Very happy for you Lin!!!😄
    Susan
  3. Like
    Susanrae got a reaction from G.A.M. in Stage IV NSCLC   
    Good afternoon, 
    Well, I met with both my Medical Oncologist and Radiation Oncologist and next week I start receiving radiation therapy (not sure if it is photon or proton therapy, as explained to me) next Tuesday which will occur for 15 consecutive days (excluding Saturday and Sunday).  Along with this I will be receiving weekly, partial doses of carboplatin and paclitaxel for these 3 weeks also.  Although, the radiation therapy is the "star" and the chemotherapies are "helpers."  Both my Radiation and Medical Oncologists seem very positive about my outcome, but the Radiation Oncologist did inform me that if 10 of them were sitting in one room, all 10 would probably have different ideas about the best treatment, especially considering my stage IV status.  Because my brain has been clean for a year and my cancer has not spread anywhere else in my body, the Oncology professionals stated that they have a better grip on the biology of my cancer one year out from initial diagnosis.  Optimally, my odds of NED are about 15 to 20%!  Although, they have assured me there will at minimum be tumor regression!
    Although I am somewhat scared and anxious (as you all know how it is), I am ready for this! I do feel that I am in good hands and am grateful that radiation therapy is an option along with the chemo cocktail and insurance will pay for it!  
    Thanks to everyone on this site for taking the time to read this along with your support, inspiration and helpful comments!  You all are a godsend!  Thank you, Susan Rae
  4. Like
    Susanrae got a reaction from Lin wilki in One year survivor   
    Congratulations on making the year!  More reason to enjoy your visit Lin!  It is always good to get away along with reconnecting with family and/or friends. It is a time of joy for you and yours.  Worry about the scans and treatment can wait until another day!  Take care now.  Susan
  5. Like
    Susanrae reacted to Lin wilki in One year survivor   
    I just passed the one year mark since diagnosis. It seems longer since it took months of testing and anxiety to finally get that horrible diagnosis Stage 4 adenocarcinoma!  So I’ve accepted it, I’m living with it but not happily. Can only hope my current treatment of Kadcyla is working since nothing has worked yet!  
    My dad just passed at 91. We had a small service at the funeral home with a priest that knew my dad — in better days. He said live life while you have it. That struck a chord!  My dad gave up when my mom passed 18 years ago!  What a waste
    It sure made me think I better take that to heart. With the struggles I’ve had with this disease it would be easy to give up. However I’m here I have family so I need to try harder to Live!  That’s what I’m trying to do.  HAPPY MOTHERS DAY 
  6. Like
    Susanrae reacted to Lin wilki in Stage IV NSCLC   
    Good luck on your new plan. I always say if they present you with options - go for it!  
    I think I’m always afraid of the day they say sorry no more options!
    Thank goodness the treatments are always evolving and there is something new to attack this disease
    You got this!  That is great news that they give you a chance for NED. 
  7. Like
    Susanrae reacted to Susan Cornett in Stage IV NSCLC   
    I had a similar therapy regimen in 2017. I highly recommend chemocare.com as a source for what to expect and how to mitigate some of the side effects of the chemo. Stay positive!
  8. Like
    Susanrae reacted to LouT in Stage IV NSCLC   
    Susanrae,

    You're in my prayers and thoughts and I'm looking for good things to come from your therapy.
    Lou
  9. Like
    Susanrae got a reaction from Susan Cornett in Stage IV NSCLC   
    Good afternoon, 
    Well, I met with both my Medical Oncologist and Radiation Oncologist and next week I start receiving radiation therapy (not sure if it is photon or proton therapy, as explained to me) next Tuesday which will occur for 15 consecutive days (excluding Saturday and Sunday).  Along with this I will be receiving weekly, partial doses of carboplatin and paclitaxel for these 3 weeks also.  Although, the radiation therapy is the "star" and the chemotherapies are "helpers."  Both my Radiation and Medical Oncologists seem very positive about my outcome, but the Radiation Oncologist did inform me that if 10 of them were sitting in one room, all 10 would probably have different ideas about the best treatment, especially considering my stage IV status.  Because my brain has been clean for a year and my cancer has not spread anywhere else in my body, the Oncology professionals stated that they have a better grip on the biology of my cancer one year out from initial diagnosis.  Optimally, my odds of NED are about 15 to 20%!  Although, they have assured me there will at minimum be tumor regression!
    Although I am somewhat scared and anxious (as you all know how it is), I am ready for this! I do feel that I am in good hands and am grateful that radiation therapy is an option along with the chemo cocktail and insurance will pay for it!  
    Thanks to everyone on this site for taking the time to read this along with your support, inspiration and helpful comments!  You all are a godsend!  Thank you, Susan Rae
  10. Like
    Susanrae got a reaction from Tom Galli in Stage IV NSCLC   
    Kristin, Michelle and Tom,  Thanks a bunch!  You all are always there for the Longevity group.  Much appreciated.  All the best, Susan Rae
  11. Like
    Susanrae reacted to LUNGevityKristin in Stage IV NSCLC   
    I'm so glad you have a plan in place and a great team of doctors supporting you!  Please keep us updated on how you are feeling during treatment.  
  12. Like
    Susanrae reacted to Rower Michelle in Stage IV NSCLC   
    Five years ago the odds of NED were 2%.  When you think about 20%, that’s a huge increase that doesn’t take into account the current scientific advances.  With each year the oncologist’s arsenal gets a little bigger.   
    Time to give that cancer a really hard time. It picked the wrong person.  Lock and load!  
  13. Like
    Susanrae reacted to Tom Galli in Stage IV NSCLC   
    Susan Ray,
    I’m impressed with your calm but complete description of your therapy. I can’t detect any fear or uncertainty in your writing. Therefore, you are of the right mind and attitude to engage your lung cancer. 
    Stand up, put on your battle rattle, lock and load, and proceed to engage and defeat your cancer enemy. 
    Stay the course,
    Tom
  14. Like
    Susanrae got a reaction from Tom Galli in Stage IV NSCLC   
    Good afternoon, 
    Well, I met with both my Medical Oncologist and Radiation Oncologist and next week I start receiving radiation therapy (not sure if it is photon or proton therapy, as explained to me) next Tuesday which will occur for 15 consecutive days (excluding Saturday and Sunday).  Along with this I will be receiving weekly, partial doses of carboplatin and paclitaxel for these 3 weeks also.  Although, the radiation therapy is the "star" and the chemotherapies are "helpers."  Both my Radiation and Medical Oncologists seem very positive about my outcome, but the Radiation Oncologist did inform me that if 10 of them were sitting in one room, all 10 would probably have different ideas about the best treatment, especially considering my stage IV status.  Because my brain has been clean for a year and my cancer has not spread anywhere else in my body, the Oncology professionals stated that they have a better grip on the biology of my cancer one year out from initial diagnosis.  Optimally, my odds of NED are about 15 to 20%!  Although, they have assured me there will at minimum be tumor regression!
    Although I am somewhat scared and anxious (as you all know how it is), I am ready for this! I do feel that I am in good hands and am grateful that radiation therapy is an option along with the chemo cocktail and insurance will pay for it!  
    Thanks to everyone on this site for taking the time to read this along with your support, inspiration and helpful comments!  You all are a godsend!  Thank you, Susan Rae
  15. Like
    Susanrae got a reaction from Rower Michelle in Stable!   
    Very happy for you Michelle!  Enjoy your summer!!  Susan
  16. Like
    Susanrae reacted to Rower Michelle in Stable!   
    To all my Lungevity Family, 
    Thank you for the continued prayers and support!  We are very blessed with another round of stable scans.  The oncologist said he was very pleased with the results thus far after 18 months on targeted therapy.   We're going to start spacing out the scans to about every 4 months.   I've got labs again in two months to reassess.  I wish I could say I'm breathing a sigh of relief, but you guys know how it goes.  Takes a while to come back down from the scanziety.   It's going to be a glorious summer!  
    Michelle 
  17. Like
    Susanrae reacted to Rower Michelle in Tumor progression   
    SusanRae, 
    I admire your strength!  I'm so sorry to hear about this update.   I've seen a few of my local group members have successfully gone through radiation which did a great job of stopping progression.  Prayers for you heading into the MRI.   You know the drill, we'll be here every step of the way.   Carry on. 
    Michelle 
  18. Like
    Susanrae got a reaction from Lin wilki in Tumor progression   
    Once again, thanks for your wisdom, support and guidance which is such a huge benefit for all who have been touched by you and others via Lungevity—an invaluable resource and support system.  Thank you.
  19. Like
    Susanrae got a reaction from Tom Galli in Tumor progression   
    Once again, thanks for your wisdom, support and guidance which is such a huge benefit for all who have been touched by you and others via Lungevity—an invaluable resource and support system.  Thank you.
  20. Like
    Susanrae got a reaction from Rower Michelle in Tumor progression   
    Once again, thanks for your wisdom, support and guidance which is such a huge benefit for all who have been touched by you and others via Lungevity—an invaluable resource and support system.  Thank you.
  21. Like
    Susanrae got a reaction from Tom Galli in Tumor progression   
    Rose, Thank you SOOOO much for your positive input.  It was good to hear of the 51% decrease in size of the lung tumor.  Take care now!
  22. Like
    Susanrae got a reaction from Tom Galli in Tumor progression   
    Good morning,  Well, my adventure with chemotherapy, specifically carboplatin and Alimta, then Alimta only for the past 4 months has left me with significant tumor progression.  Therefore, onto the next phase, which will either be radiation (not sure which type) or another type of chemo or two.  We shall see what the professionals have in store for me.  I have an MRI today to rule out any further metastases, specifically in my brain which for 1 year has been clean...Yay!  Then next week on Tuesday I meet with a Radiation Oncologist to see what he has to say about my situation and on Friday meet with my Clinical Oncologist to see what my next adventure will be in the lung cancer world!!  I have faith, and also am thankful that I have survived 1 year since my diagnosis and have felt quite well through it all.    Could have been so much worse!
    I hope all of my Longevity friends are doing OK with their lung cancer journey compounded with COVID-19.  I am seeing dust bunnies I have ignored for years (I am not sure if that is a good or bad thing.)  Take care now.  Susan Rae
  23. Like
    Susanrae reacted to Rose Kaiser in Tumor progression   
    So sorry to hear about your tumor progression. I have been on maintenance of Alimta and Keytruda for almost a year. My January scan showed some growth in my lung tumor but no growth in my bone metastases. I had SBRT radiation on the lung tumor and after 2 months it had decreased in size by 51%. Like you, I feel  pretty good while on maintenance and 2 of the 3 weeks between treatments life goes back to near normal - except since the COVID-19 pandemic. 
    Good luck with your upcoming appointments. Stay positive!
  24. Like
    Susanrae reacted to Roz in Covid-19 times   
    I just wanted everyone to know that I'm wishing you well as we deal with the virus.
    I know many of us are waiting for treatment and staying in our homes.
    My best to all!!!
     
    Ro
  25. Like
    Susanrae got a reaction from Lin wilki in Nerves   
    Hi Lin,  I hope you start feeling better soon.  I had my 3rd maintenance treatment of Alimta last Friday and have been experiencing chest pain and fatigue, hope it passes soon.  Will keep my fingers crossed and say a few prayers for positive scans for you.  Mine are coming up in a few weeks too.  Take care now.  Susan
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