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Susan Cornett

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  1. Like
    Susan Cornett reacted to LouT in Question for my fellow survivors   
    Thanks Deb,
    After talking with my pulmonologist I was becoming convinced that his logic made sense.  Then I went and read some of the latest studies (including the NIH study) on post-lobectomy protocol and while they do say that the guidelines should be altered to fit the case data, the findings convinced me that a 6-month scan should be standard even for low-risk (stage 1a) cancer.  I'm waiting to hear back from the surgeon, but now believe that even without the need for chemo I do need an oncologist.  Thanks for your input.
    Lou
  2. Like
    Susan Cornett reacted to LouT in Question for my fellow survivors   
    Curt, Michelle,
    Thanks.  I was feeling that he wasn't making the best decision, but you both convinced me to get a scan from someone, if not from him  I'll go to my surgeon.  I never saw an oncologist, perhaps because they didn't believe I needed any chemo after the surgery.  So, I'll try again with the pulmonologist (who had been great up to this point) and if not successful I'll call my surgeon or even my PCP.  

    Thanks again for the input.  It solidified my resolve on the issue.
    Lou
  3. Like
    Susan Cornett got a reaction from LouT in Back on the Roller Coaster   
    Glenn,
    I can't give you medical advice but my experience with SBRT was quite good. It was painless, quick, and no side effects. I've been NED since I completed that treatment. 
    You also sound like so many of us with multiple "ologists" looking after us. I had the thoracic surgeon, two different oncologists, a pulmonologist, an ENT (due to mets to the thyroid AND thyroid cancer) and my primary. I am currently down to my medical onc, my primary, and my pulmonologist. My pulmo defers to the oncologist for the big decisions. We all treat him as the quarterback and he has been fantastic at keeping all of the docs in the loop.
    The balancing act is just another part of this journey.
  4. Like
    Susan Cornett got a reaction from Tom Galli in Back on the Roller Coaster   
    Glenn,
    I can't give you medical advice but my experience with SBRT was quite good. It was painless, quick, and no side effects. I've been NED since I completed that treatment. 
    You also sound like so many of us with multiple "ologists" looking after us. I had the thoracic surgeon, two different oncologists, a pulmonologist, an ENT (due to mets to the thyroid AND thyroid cancer) and my primary. I am currently down to my medical onc, my primary, and my pulmonologist. My pulmo defers to the oncologist for the big decisions. We all treat him as the quarterback and he has been fantastic at keeping all of the docs in the loop.
    The balancing act is just another part of this journey.
  5. Like
    Susan Cornett got a reaction from Rower Michelle in Scan Time (again)   
    Sending all of the good energy your way!
  6. Like
    Susan Cornett got a reaction from Tom Galli in Scan Time (again)   
    Sending all of the good energy your way!
  7. Like
    Susan Cornett got a reaction from Tom Galli in New Member   
    Hi Rose. I had SBRT in September 2018 for a tumor in my lower left lung. I've been NED since so I am definitely a fan of the treatment. I had already had my upper lobe removed and my doc didn't think I was a good candidate for surgery. By the time mine was found, it was in my lymph nodes and thyroid. 
    Please keep us posted on your progress and let us know if there is anything we can do for you.
  8. Like
    Susan Cornett reacted to Rower Michelle in Possible recurrence   
    Of course you feel wiped out- that’s perfectly “normal”.   One of the ways I look at this is that in the new world of treatment options, stage is just a number that drives the treatment plan since diagnosis is not prognosis.  
    I really don’t understand why doctors give average PFS to us anymore when the reality is they don’t know. Most of the clinical trials were done with people who had previous treatment with older generation targeted therapies. In other words living with the disease longer than someone taking Tagrisso for the first time.  
     
    While at some point the inhibitor will develop resistance, it really depends on the circumstances.  In many cases, there is another biopsy and diagnostic process again.  Today the most likely scenario is targeted radiation while continuing on a targeted therapy to provide the longest duration of Tagrisso.   One of our group members had shoulder pain which unfortunately was due to disease progression.  After an expert consultation at one of the big gun hospitals, targeted radiation was administered and this member continues to take the targeted therapy.  
    There are some clinical trials using immunotherapy with EGFR too.  
    At the current pace there will be additional options even though it’s hard, try not to worry about what’s next.  Dana Farber is one of the leaders in EGFR, providing your Mom the best available treatment.  
    Michelle
     
     

     
     
  9. Like
    Susan Cornett reacted to DFK in Scan Time (again)   
    Good one Curt......I'm sure Michelle appreciated the giggle as much as I did.
    “Any prayers, thoughts, ju ju or good karma is appreciated as I head into this next round.”
    I will be keeping you in my thoughts and prayers and will intent NED, NED and more NED.  In the meantime, your task is too look into his eyes and repeat after me, "You may be handsome, but I am NED". And as the Pharoah said, " So let it be written, so let it be done. 
     

    P.S. I tried to make this image smaller and couldn't figure it out, but on the other hand, not too shabby a pic to look at......Take Care, stay positive, DFK
  10. Haha
    Susan Cornett reacted to Curt in Scan Time (again)   
    Why did the chicken cross the road?  No one knows, but the road sure was pissed.   

    I figured a joke would go further than any of the advice I could give.  You’ve probably received or given it all at this point.  Prayers, positive thoughts, good ju ju amd karma all heading your way.   
    My wife and I got engaged on Amelia Island on the beach.   Cumberland Island is a great day trip.  Wild horses can be found on the beaches there.  We haven’t been back since but we talk about doing it at some point.   
  11. Like
    Susan Cornett reacted to Rower Michelle in Scan Time (again)   
    Hi All, 
    Somehow the last three months just flew by doing blissfully normal things.  I'm up for the semi-annual brain MRI and CT Scan next Wednesday afternoon results scheduled for Thursday morning.  I've got the usual activities planned to help pass the time.  Overall I'm feeling pretty good heading into this scan, which is 15 months on targeted therapy.  For some reason the scanxiety hasn't hit yet (am I getting "used to" this????).    I just started the LiveStrong Program at the YMCA so I'll probably be too sore and wiped out to have the worry monkeys take over.  
    Irrespective of the results we are heading to Amelia Island the last week of January for our normal winter trip which I am really looking forward to.   In the meantime, I've placed a call to the clinic this morning to obtain the Valium for the MRI so I am locked and loaded for this go round.  Any prayers, thoughts, ju ju or good karma is appreciated as I head into this next round.   I'll keep you all posted. 
    Michelle 
  12. Like
    Susan Cornett got a reaction from G.A.M. in I've decided   
    I presume you're talking about SBRT.  I had that treatment in September 2018 and have been NED since. I didn't have any side effects from that treatment. Surgery wasn't an option for me but thankfully SBRT was. 
  13. Like
    Susan Cornett reacted to TXCharmer in First Timer   
    Hello;
    Everyone, my name is Charmaigne and I have 1 daughter and a 9 year old grand daughter. I was diagnosed with Stage 4 lung cancer in September of 2015. I am on Tagrisso and is doing very well. I have faith in God and I give him all the credit for bringing me through thus far. My mom and I were diagnosed within a month of each other, she passed in 2018 and was symptom free until the very end. I am not sure what else to say. 
  14. Like
    Susan Cornett got a reaction from Tom Galli in I've decided   
    I presume you're talking about SBRT.  I had that treatment in September 2018 and have been NED since. I didn't have any side effects from that treatment. Surgery wasn't an option for me but thankfully SBRT was. 
  15. Like
    Susan Cornett reacted to St Michael in Possible recurrence   
    Thank you for the response Tom. I’ll post an update after tomorrows meeting.
    Be well.
  16. Like
    Susan Cornett reacted to Tom Galli in Possible recurrence   
    St. Michael,
    Could your mom have a recurrence after a lobectomy? Yes, unfortunately. My doctors are reluctant to give me test results telephonically. Now after nearly 16 years, the after scan email from my doc is “relax—more details at our consultation.” I’ve been fortunate but had 4 recurrences in my history. 
    I think you should steel yourself for a recurrence. Considering the PET, the biopsy, and the forthcoming MRI,  bad news seems likely. 
    Decisions lie ahead, but one thing is certain. Cancer or not, we have a life to lead. Encourage your mom in this regard. 
    Stay the course. 
    Tom
  17. Like
    Susan Cornett reacted to G.A.M. in WHY DO WE KEEP FIGHTING THE INEVITABLE?   
    I opted for a new technique in heart bypasses in 2003. No worries about the artery they used for the bypass. No open chest. I was 50 years old and wasn't ready to cash in. I had a three year old and a wife to care for. I took the risk and I'm still here.
    Fast forward to now. That daughter is a junior in college and our financial situation is greatly improved as I've moved to retirement. I've opted for SBRT with hopes that I can see my daughter graduate from college and love my family a while longer. I'm a selfish man.
  18. Like
    Susan Cornett reacted to Curt in WHY DO WE KEEP FIGHTING THE INEVITABLE?   
    Accepting the inevitability of ones mortality is one thing   Accepting when that life ends is another.  This reminds me of a phrase made popular by Arya Stark in the Game of Thrones series.   It goes something like.  “There is only one thing we say to Death, Not Today”.
     

  19. Like
    Susan Cornett reacted to DFK in WHY DO WE KEEP FIGHTING THE INEVITABLE?   
    Interesting thoughts.
    I suppose you would probably get more banter if you weren't on a website called LUNGEVITY, 
    as in LONGEVITY, 
    as in long life,
    as in the will to live,
    as in self preservation,
    as in finding value in my current life despite my cancer, 
    as in not fighting but utilizing science to improve the quality of my life,
    as in my disease can be currently controlled,
    as in not being powerless and nothing is inevitable until the fat lady sings,
    as in believing in hope,
    as in believing and looking forward to tomorrow,
    as in believing in joy when I see the innocence and wonder in my grandchildren’s eyes,
    as in the absolute beauty of every sunrise and the privilege of participating in that,
    as in riding a bike along a beautiful ocean coastline,
    as in the thanks and gratitude I feel every single day to be living,
    as in I will probably be the first in line to agree that life is a complex difficult process,
    as in I still want to live as long as my quality of life outweighs the challenges of medicine and my participation in it. 
    Comedy-drama 2019 Movie PADDLETON addresses some of your thoughts.
    Take Care, DFK
  20. Like
    Susan Cornett got a reaction from St Michael in Mom newly diagnosed with Stage IV NSCLC   
    Hi Katum and welcome. Not sure what part of H-Town you are in - I'm originally from Friendswood. Your mom's story is so similar to many others. One of my high school classmates called me in January with a similar story. She had hip pain that wouldn't stop; docs finally found a tumor and discovered it was lung cancer. She had radiation for the hip and is on an oral chemo for the primary. 
    Steff nailed it - lung cancer is just not the death sentence it once was. We've seen so many new treatments and it gives me hope. I'd like to see us get to the point of being able to treat this as a chronic disease. I strongly suggest ignoring the statistics - they just don't reflect where we are today. Stay informed and stay positive - that's the best way to move forward. We're all here for you and your mom. 
  21. Like
    Susan Cornett reacted to Curt in i DON'T CARE ANY MORE!!!!   
    @Robb6767 it’s not easy fighting lung cancer.  Some may argue it’s one of the hardest things a person could have to face.  I’m sorry you are having to do it.  The physical toll it takes from you has consequences on your emotional well being.   The emotional toll manifests itself in physical ways.   It is a difficult cycle.  Quitting drinking and smoking are both VERY difficult things to do during the good times.   They are even more difficult when going through what you are going through.  Having a local support system can  help.  A local lung cancer survivor group, a doctor or a religious leader you feel comfortable speaking with.  This site can put you in contact with someone who is going through the same things you are.  
     
    No one can do this alone.  Find ways to treat the emotional symptoms as aggressively as the physical ones.  I’m rooting for you.   Hang in there.      
  22. Like
    Susan Cornett reacted to Robert A. in 3rd Round of Chemo/Keytruda done.   
    My wife had her 3rd round on Monday. 1 more to go then a re scan to see the results. The blood work has been great so we are hopeful. Thank You to all who have advised and offered suggestions to make this journey less frightening. Robert.
  23. Like
    Susan Cornett got a reaction from Susanrae in Happy New Year   
    Cheers!
  24. Like
    Susan Cornett got a reaction from Tom Galli in Happy New Year   
    Cheers!
  25. Like
    Susan Cornett got a reaction from Roz in Happy New Year   
    Cheers!
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