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Curt

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  1. Like
    Curt got a reaction from judyb75 in Tick Tock - Scan Time   
    My first six month CT scan post lobectomy.  Not a thought crossed my mind until I put the robe on and sat down in the CT waiting room.  Then the anxiety begins.  Getting the IV provided some distraction.  I don’t mind needles and the  nurse who put it in was nice.  Then laying there staring up at the CT Machine all the “what if’s” start in.  On to the doctors waiting room.  I’m lucky that I get a CT Scan then meet with the doctor right after.  The hour in between is enough worry for me.  Sitting in the waiting room.  Tick Tock it’s like time is frozen.  From the waiting room to the exam room.  More waiting.  More wondering and worrying.  Is it taking so long because there is something wrong?  Are they reading my CT and trying to figure out what something is on there is?  Is my headache from the CT Contrasts or the stress?  The Doctor comes in.  We talk for five minutes. All clear.  NED.  Got there at 1:50 and was gone by 3:20.  I am so thankful they do it that way.  The hour and a half of worry is more than enough for me.  I really wish it was the same for everyone.  Next CT is March 2020.  
  2. Like
    Curt reacted to Moonbeam in Tick Tock - Scan Time   
    So thrilled for you Curt!!! Congratulations 
  3. Like
    Curt reacted to Lisa L in Tick Tock - Scan Time   
    Yay yay yay Curt....love hearing this!!!!
  4. Like
    Curt reacted to Tom Galli in Tick Tock - Scan Time   
    Curt,
    A NED scan 6-months post op! I'd say that calls for a CELEBRATION!
    Stay the course.
    Tom
  5. Like
    Curt got a reaction from Deb W in Tick Tock - Scan Time   
    My first six month CT scan post lobectomy.  Not a thought crossed my mind until I put the robe on and sat down in the CT waiting room.  Then the anxiety begins.  Getting the IV provided some distraction.  I don’t mind needles and the  nurse who put it in was nice.  Then laying there staring up at the CT Machine all the “what if’s” start in.  On to the doctors waiting room.  I’m lucky that I get a CT Scan then meet with the doctor right after.  The hour in between is enough worry for me.  Sitting in the waiting room.  Tick Tock it’s like time is frozen.  From the waiting room to the exam room.  More waiting.  More wondering and worrying.  Is it taking so long because there is something wrong?  Are they reading my CT and trying to figure out what something is on there is?  Is my headache from the CT Contrasts or the stress?  The Doctor comes in.  We talk for five minutes. All clear.  NED.  Got there at 1:50 and was gone by 3:20.  I am so thankful they do it that way.  The hour and a half of worry is more than enough for me.  I really wish it was the same for everyone.  Next CT is March 2020.  
  6. Like
    Curt got a reaction from PaulaC in Tick Tock - Scan Time   
    My first six month CT scan post lobectomy.  Not a thought crossed my mind until I put the robe on and sat down in the CT waiting room.  Then the anxiety begins.  Getting the IV provided some distraction.  I don’t mind needles and the  nurse who put it in was nice.  Then laying there staring up at the CT Machine all the “what if’s” start in.  On to the doctors waiting room.  I’m lucky that I get a CT Scan then meet with the doctor right after.  The hour in between is enough worry for me.  Sitting in the waiting room.  Tick Tock it’s like time is frozen.  From the waiting room to the exam room.  More waiting.  More wondering and worrying.  Is it taking so long because there is something wrong?  Are they reading my CT and trying to figure out what something is on there is?  Is my headache from the CT Contrasts or the stress?  The Doctor comes in.  We talk for five minutes. All clear.  NED.  Got there at 1:50 and was gone by 3:20.  I am so thankful they do it that way.  The hour and a half of worry is more than enough for me.  I really wish it was the same for everyone.  Next CT is March 2020.  
  7. Like
    Curt got a reaction from Steff in Tick Tock - Scan Time   
    My first six month CT scan post lobectomy.  Not a thought crossed my mind until I put the robe on and sat down in the CT waiting room.  Then the anxiety begins.  Getting the IV provided some distraction.  I don’t mind needles and the  nurse who put it in was nice.  Then laying there staring up at the CT Machine all the “what if’s” start in.  On to the doctors waiting room.  I’m lucky that I get a CT Scan then meet with the doctor right after.  The hour in between is enough worry for me.  Sitting in the waiting room.  Tick Tock it’s like time is frozen.  From the waiting room to the exam room.  More waiting.  More wondering and worrying.  Is it taking so long because there is something wrong?  Are they reading my CT and trying to figure out what something is on there is?  Is my headache from the CT Contrasts or the stress?  The Doctor comes in.  We talk for five minutes. All clear.  NED.  Got there at 1:50 and was gone by 3:20.  I am so thankful they do it that way.  The hour and a half of worry is more than enough for me.  I really wish it was the same for everyone.  Next CT is March 2020.  
  8. Like
    Curt reacted to LUNGevityKristin in Nice to meet you!   
    Hi everyone!  I'm Kristin, the new Digital Communities Assistant at LUNGevity.  It's an honor to be part of such a great team and I look forward to getting to know everyone in the community.  If there is ever anything I can do to help, please let me know!
  9. Like
    Curt reacted to Leo in Complete Regression/Response For Local SCLC Recurrence   
    As I shared with the group a short time back, after a year of NED (no evidence of disease), I was diagnosed with a local, limited recurrence of Small Cell Lung Cancer (I.e in the same location as original disease with no regional or distant Mets)
    I received 4 , 3 day cycles of concurrent Chemo (Carboplatin & Etoposide) and Immune Therapy (Tecentriq - day 1 of each cycle only) with three weeks between each cycle. 
    Findings from post treatment PETCT on May 1, found complete regression/response to treatment, no new or old nodules and no remaining areas of suspect FDG uptake. One of the cleanest scans I’ve ever had. 
    Will see Medical and Radiation Oncologists next week to review results, any next steps (preventative) and begin maintenance immunotherapy on Tecentriq. 
    Will continue to keep you posted. - Looking forward to my “scanxiety” free weekend! 
    Happy to provide any further details that may be helpful to anyone. 
  10. Like
    Curt reacted to Sillycat1957 in New Member   
    OMG! I'm trying to introduce myself as a new member here ☺️ Not quite sure if this is how it's done, seems like Rocket Science to me! A lovely lady DFKS directed me here to join the active Durvalumab  Forum. Seems the one I was following in Inspire has somewhat dried up for now. I will post more about myself once I'm sure this is how I should get started
    Thank you All Roseann
    Stage llla NSCLC (adenocarcinoma)
  11. Like
    Curt got a reaction from Lisa L in Scanziety Season.   
    Thinking about you Tom.  Mine is on Monday.  Fingers crossed for both of us. 
  12. Like
    Curt reacted to Tom Galli in Scanziety Season.   
    Just got an email from my Medical Oncologist: NED!  The worry evaporates. 
    Tom
  13. Like
    Curt reacted to Rower Michelle in Scanziety Season.   
    Wow Curt- that time went fast.  Hoping you get another all clear! 
  14. Like
    Curt got a reaction from Rower Michelle in Scanziety Season.   
    Thinking about you Tom.  Mine is on Monday.  Fingers crossed for both of us. 
  15. Like
    Curt got a reaction from Moonbeam in Scanziety Season.   
    Thinking about you Tom.  Mine is on Monday.  Fingers crossed for both of us. 
  16. Like
    Curt reacted to Lisa L in Just numb !!!!!   
    Janice I wanted to reach out because I was you in December 2018, 52 had ct  and a 9mm nodule  was found and I was terrified, my anxiety was so high my dr. Had to put me on meds.   I literally thought my life was over and I found this forum and it changed everything. First thing I did was get a pulmonologist who set up a pet scan, the nodule did not light up so my pulm doc had me have another scan 4 months later and the nodule was the same, so just a couple weeks ago had another one and it was the same.    My pulmonologist and radiologists says it’s stable and we will just keep scanning every 6 months  for a couple of years. I like how Curt said it’s like a mole you have to keep an eye on. Breath it will get better I promise you.  Love and light ❤️
  17. Like
    Curt got a reaction from Barb1260 in How big for biopsy?   
    Mine was 8mm.  Didn’t light up on a PET scan and couldn’t be biopsied.  I opted for a wedge resection.  Turned out I was in the 6% and had a Right Upper Lobe lobectomy right then and there during the resection.  I’m really hoping better, less invasive, early diagnostic options become available soon.  
  18. Like
    Curt reacted to Rower Michelle in Ground Control to Major Tom   
    I know guys, what the heck kinda a title is that? Well if I’m tracking this right tomorrow one if our fearless leaders, Tom G heads off to  for a scan. 
    Who doesn’t love David Bowie?? So Tom, may God’s love be with you. Keep us posted & thanks for being there with us!!
  19. Like
    Curt reacted to Tom Galli in Ground Control to Major Tom   
    Michelle,
    Sept 11 actually, oh my that’s 9/11! I confess I still suffer Scanziety!  Thanks for the good wishes. 
    I’ll stay the course.
    Tom
  20. Like
    Curt got a reaction from LouT in Just numb !!!!!   
    Hi Janice.  Sorry you’re with us.  It is terrifying to hear you have a “spot” on your lung.  Please know that 1CM is REALLY small and the majority of nodules are NOT cancer.  You should definitely  keep watching it.  It’s kind of like a suspicious mole but on the inside.  No reason for panic but plenty of reason to stay diligent.  I would also see a pulmonologist.  Thoracic surgeons see things that need to be cut out, pulmonologist see things from a different perspective.  It’s good to have both.  
  21. Like
    Curt got a reaction from BridgetO in Just numb !!!!!   
    Hi Janice.  Sorry you’re with us.  It is terrifying to hear you have a “spot” on your lung.  Please know that 1CM is REALLY small and the majority of nodules are NOT cancer.  You should definitely  keep watching it.  It’s kind of like a suspicious mole but on the inside.  No reason for panic but plenty of reason to stay diligent.  I would also see a pulmonologist.  Thoracic surgeons see things that need to be cut out, pulmonologist see things from a different perspective.  It’s good to have both.  
  22. Like
    Curt got a reaction from Rower Michelle in Feeling unwell 6months after lobectomy   
    I had a lobectomy in February as well.  I’m not completely healed either. Still have some numbness on the incision side.  Your symptoms do sound like it could be depression.  How long have you been on the depressant?  Please excuse a man suggesting this but those symptoms also sound like it could be menopause.  I always suggest people follow their gut.  Push the doctors to look deeper into whatever you think it could be.  Keep in mind that lung cancer doesn’t usually have symptoms until very late stage.  It would be pretty out if the ordinary for cancer to progress to the point of symptoms this soon after you were given an all clear in February.  When was your last CT?   
  23. Like
    Curt reacted to Tom Galli in Beginning of our journey...   
    Miryana,
    Welcome and very sorry to learn of your husband's diagnosis.
    So, let's get right to it: brain met dealt with and two small tumors, poorly differentiated, in his left lung and lymph nodes displaying high SUV and first line treatment is Keyturda, a immune checkpoint inhibitor.  First, Keytruda is good stuff and let's hope if arrests the cancer in his tumors lymph nodes. Was the Gamma Knife treatment, post operatively, administered by a radiation oncologist? if so, I'd suggest another consultation with a radiation oncologist to see if it is possible to fry the tumors and offending lymph node with stereotactic radiation (SBRT). If not, I'd find one and see if that treatment is available.  Radiation oncologists are getting very aggressive treating multiple metastatic sites with precision radiation (stereotactic radiation). A second beneficial effect of this treatment is a phenomenon called the Abscopal Effect and note how effective it can be when combined with checkpoint inhibitor immunotherapy is this NIH paper.
    Why no involvement with a pulmonologist? While pulmonologist are very valuable disciplines in diagnosing lung cancer and treating breathing complications associated with the disease, the domaine speciality of lung cancer treatment is the medical and radiation oncologist.  So if his breathing is not hampered, a medical oncologist is the right doctor and I'd consult with a radiation oncologist to see if precision radiation is a possible treatment.
    I'm assuming the brain met was biopsied because he has an adenocarcinoma diagnosis and is receiving immunotherapy as a treatment. If that is the case, there is a strong probability that one of the poorly differentiated nodules is the primary. I'd discuss this assumption with the radiation oncologist during the first consultation. Ensure he or she has access to all completed tests and scans. Get copies yourself and bring them to the consultation.
    Stay the course.
    Tom 
  24. Like
    Curt reacted to Rower Michelle in Beginning of our journey...   
    Hi Miryana,
    Just wanted to say hello & welcome. A friend of mine is in the process of completing a 2 year course of Keytruda which has been quite successful with no evidence of disease.  There’s been more treatment advances in the last five years than the past 50 years. 
    There’s an uptick of these oddball lung cancers without symptoms as 90% are diagnosed at Stage IV. You’re not alone here.  No one seems to know why this is happening.  The immunotherapy world is rapidly making progress.  Hold onto your hope  
    There’s a wonderful group of people here to assist. Just let us know how we can help. 
    Michelle
  25. Like
    Curt reacted to Miryana in Beginning of our journey...   
    Thank you very much Michelle. He received his first infusion and he did not experience any side effects whatsoever. I pray to God it stays like that. I pray for all the people affected by this disease. I feel in my heart we are approaching the time  when the cure will be discovered. 
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