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Susanrae

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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. 
  6. 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
  7. 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
  8. 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. 
  9. 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
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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
     
     
     
  16. Like
    Susanrae got a reaction from Jennedy in Side effects   
    Hi Tom and Jennedy,  I hopped on this site tonight but have not been around since June 2020 which is when my 3 weeks of radiation happened.  A few times I suffered from the "block" you described Tom, and I was given an Rx for Lidocaine Viscous HCL 2% which worked.  It numbed my throat temporarily so I couldn't feel the block and could eat.  The trick is not to get any of this liquid on your tongue so that does not go numb too!!  Hope this works for you!  Hang in there and take care, Susan
  17. Like
    Susanrae got a reaction from BridgetO 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
     
     
     
  18. Like
    Susanrae reacted to Claudia in Judi L   
    Hi Judi. I wanted to welcome you to the forums and I'm sorry you are here. Your story is similar to mine. I also have Squamous Cell and have been in treatment now for a year and a half so far.I also am an optimist and have found that it's a good thing to be. I try not to worry until there is something happening to worry about. I am mid-scan (2 months to go until my next one) and I am hoping for a clean scan for the first time. I mean, why not? Other people have clean scans so I can too.  It's nice to meet a fellow optimist . Please feel free to ask any questions you may have. We have some of the smartest people in the world here. I am doing well and I hope you will too. Peace, Light and great scans to all, Claudia
  19. Like
    Susanrae reacted to Claudia in New to Adenocarcinoma of the lung and new to here   
    Hi Molly, Welcome to the forum. Like you I was diagnosed with stage 4 NSCLC but mine is Squamous cell. The first few months were a blur of doctors, tests, biopsies and crying. Once I found my oncologist (who I am in love with, I mean I would marry him LOL) and started my treatment I felt better. Not that the treatment was fun but I felt like I was fighting back. That was about a year and a half ago. My cancer responded well to chemo (ugh) and Keytruda and I have been on just Keytruda for about a year. I finished SBRT in March and had a pet scan. My oncologist was very happy with the results and from what I understand I may have a really good scan in a couple of months. There is hope out there. There are many new treatments for lung cancer and the people on this forum are knowledgable and helpful as can be. Try to stop googling. Most of the info online is old and things have changed for the better. Hang in there and try to think positive thoughts. Yoga and meditation has helped me. Give it a try. Maybe it will help you too. Good luck and keep us in the loop. 
    Peace, light and great scans to all, Claudia
  20. Like
    Susanrae got a reaction from Tom Galli in 2nd Opinion   
    Hi Babs,  
    I haven't posted for awhile.  April of 2019 I was diagnosed with Stage IV nsclc, adenocarcinoma along with brain metastases at Mayo and have been very satisfied with my care.  I also worked there for about 25-30 years so that helps a great deal!
    During your visit to Mayo it is a good idea to get a business card from every physician you encounter during your care; if you are not offered a card it is simply an oversight, they are very busy people, so you just need to ask them for one.  Mayo is a teaching clinic so you will meet your primary consultant along with his/her Fellow, maybe Residents, etc., and/or other members of their team, which is why getting the business cards is very important.  Meeting all the different professionals is a good thing but also very overwhelming and impossible to remember all of the names.  When you leave Mayo at the end of your visit, you will be glad you have all of the business cards!!    They did come in handy when I was first reeling from the initial diagnosis and had contact information readily available for followup questions.  I still have quite a collection, just in case!
    It is a good idea to get a second opinion if that offers you a better comfort level of care.  As said previously, if you let your current provider know that you have an appointment to get a 2nd opinion and they are totally onboard with it, it speaks highly of that oncologist.  If they are not, it goes the other way.  
    If you have any questions, about navigating through the Mayo complex please do not hesitate to contact me.  Otherwise there are information desks and the people that work them are very informative.
    Hang in there!  
    Take care,
    Susan
     
     
     
     
     
     
  21. Like
    Susanrae got a reaction from Tom Galli in Side effects   
    Hi Tom and Jennedy,  I hopped on this site tonight but have not been around since June 2020 which is when my 3 weeks of radiation happened.  A few times I suffered from the "block" you described Tom, and I was given an Rx for Lidocaine Viscous HCL 2% which worked.  It numbed my throat temporarily so I couldn't feel the block and could eat.  The trick is not to get any of this liquid on your tongue so that does not go numb too!!  Hope this works for you!  Hang in there and take care, Susan
  22. Like
    Susanrae got a reaction from LexieCat in 2nd Opinion   
    Hi Babs,  
    I haven't posted for awhile.  April of 2019 I was diagnosed with Stage IV nsclc, adenocarcinoma along with brain metastases at Mayo and have been very satisfied with my care.  I also worked there for about 25-30 years so that helps a great deal!
    During your visit to Mayo it is a good idea to get a business card from every physician you encounter during your care; if you are not offered a card it is simply an oversight, they are very busy people, so you just need to ask them for one.  Mayo is a teaching clinic so you will meet your primary consultant along with his/her Fellow, maybe Residents, etc., and/or other members of their team, which is why getting the business cards is very important.  Meeting all the different professionals is a good thing but also very overwhelming and impossible to remember all of the names.  When you leave Mayo at the end of your visit, you will be glad you have all of the business cards!!    They did come in handy when I was first reeling from the initial diagnosis and had contact information readily available for followup questions.  I still have quite a collection, just in case!
    It is a good idea to get a second opinion if that offers you a better comfort level of care.  As said previously, if you let your current provider know that you have an appointment to get a 2nd opinion and they are totally onboard with it, it speaks highly of that oncologist.  If they are not, it goes the other way.  
    If you have any questions, about navigating through the Mayo complex please do not hesitate to contact me.  Otherwise there are information desks and the people that work them are very informative.
    Hang in there!  
    Take care,
    Susan
     
     
     
     
     
     
  23. Like
    Susanrae reacted to Lisa Haines in Can't stop worrying and reading up about lung cancer   
    CatLady,
      One thing that was advised to me very early on was to not rely on much of the information found online doing Google searches.  Dr. Google as many of us refer to is in the cancer world is not a very reliable or updated source of information.  Another thing is that I never allowed any of the statistic to really bother me, I knew they were not great for a Stage IV patient, but I tried to keep a very upbeat and determined attitude and felt that not matter what I was going to beat this and continue to hope every day that a cure will come for me in my lifetime, or if not a "cure" more treatments options, so that I can continue to treat this and Live life.  More and more Cancer Survivors are being treated like other with a chronic long term illness.  As long as we have options and have a good response, that's what matters most to me.    I have never asked for a long term prognosis and never will and quite honestly I don't then any doctor should really ever put a time frame on any life.  There is simply no way to know for certain exactly how each person will react to treatment and how well it may work for them.   
      If you want to find the more reliable informative, your'e much better off in one of the large and well established groups Ike LUNGevity.   I have learned far more from LUNGevity the another website and I'm very thankful and grateful for all the time and effort they put forth in trying to provide us with the most updated and current information relative to Lung Cancer.  One of your other best sources of information should be from your (or in your care, your Mum's) oncology team.   I find it vital to have a team I am confident in and one that I can openly and effectively community with.  I've been through the heartache of losing a beloved "Oncologist" who I adore and feel was my life saver.   She left my area for a wonderful new career opportunity and after she left I felt lost for well over a year.  I had an Oncologist in the same center take over my case, but I never liked him or feel I could easily communicate with him, even though he was not to be brilliant and had been practicing much longer than my first Oncologist.  I then went through two more "consults" to purse finding a new team, but because I also adored all the other staff and my hospital, it was a huge decision to ahve to leave ALL of them and go somewhere else.  In the end, my hospital had by then hired two new Onc's and after getting to now each of them over a few months, I ended up moving my care to one of the newer docs but was able to stay in the same hospital with the same nurses and other staff that I have now become very comfortable with.  I'm very happy again, but I know the struggle when you are now confident in your team an that's huge.  Luckily because I had such a close relationship with my first Onc, we still keep in touch via email and I can still go to her with any questions or concerns.  I feel she is the one that picked the best treatment plan for me and it's because of her that I'm still here 5 1/2 years later and Stable with Stage IV NSCLC.
      As for Immunotherapy for me it was my life saver and I think in my case and with my cancer it's been the best possible treament.  I started with Chemo and that was the standard at the time of my diagnosed in early 2015.  Back then the Immunotherpay drugs were still only in trails but were also showing good results.   I ended up having major progression my first year and by then they had been FDA approved, but were still brand new and it was hard to find a lot of info out them on them and even from doctors, because most had not tried them yet.  My Onc wanted to put me on Opdivo was was FDA approved as a second line regardless of PDL1 (which in my case had not been tested, because it was not a test done in early 2015).  She could have tried Keytruda, but that would have required a new biopsy and more time, so she felt the Opdivo was the best and fastest option and with and with an agressively growing tumor we needed to start ASAP.   And it was very frightened and the side effects all scared me even more, so much so that I at one point decided to decline it and went to see her to discuss other options, but after a long talk and follow up with my PCP, I gave in and went with her decision.    I was the VERY first patient at my hospital and I'm currently the longest survivor.   All we could go on was what we knew from Clinical trials and of course, we learn more and more every day still.  Immunotherpay is still relatively new, but when it does work it's amazing and I am certain if I had not taken it I would not be here today, so I think in my case it was not a drug that prolonged progression, it shrank my tumor dramatically in a matter of months, despite side effects.  And after only nine months I was Stable and doing well and have been ever since without further treatment. 
    As for long term stability, I'm a great example of someone who is doing very well.   I have been off Opdivo now for almost four years and have remained stable all this time and have not needed or pursed any other treatment.  I have scans every six months (Currently) and am due again in August.   According to my Oncolgist and from the latest trial updates, those who have had my type of response continue to do well and our long term outlook is very positive, they feel we will remain stable for many more years and that makes me very happy.   
    I hope your Mum does with with her treatments and also will soon be stable or NED.  I really don't even worry so much about what "term" they want to give me.  All that matters is that my cancer is under control, it's not growing or changing and that I'm doing pretty darn well considering when this all started I was in a hospital with a brain tumor, that turned out to be a met from Stage IV Cancer and I also had a pulmonary embolism.  ALL came on with no warning until two days of of neuro changes I thought was sudden vertigo.  ALL this also was only four weeks after having hip surgery and my chest xrays during and after surgery, as well as the pre op testing never showed any indication of Lung Cancer???
    Please take care and try as best you can not to let this overwhelm you...there truly are many living long lives even with Stage IV Lung Cancer -- the advances in treatment continue each day and now we need to spread the world that we are the leading cancer killer and the we need more funding and research...
     
       
     
      
  24. Like
    Susanrae reacted to Susan Cornett in Scan results   
    I had my latest scan last week and I continue to be NED! I've been stable for almost 2 years so Super Doc says I don't have to come back for 6 months. I'm a little nervous about that as I was going every 3 months, then 4 months, but he says it's time. Like a baby bird not quite ready to leave the nest......
     
  25. 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
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