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Curt

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  1. 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)
  2. 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. 
  3. Like
    Curt reacted to Tom Galli in Scanziety Season.   
    Just got an email from my Medical Oncologist: NED!  The worry evaporates. 
    Tom
  4. Like
    Curt reacted to Rower Michelle in Scanziety Season.   
    Wow Curt- that time went fast.  Hoping you get another all clear! 
  5. 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. 
  6. Like
    Curt got a reaction from Moonbeam in Scanziety Season.   
    Thinking about you Tom.  Mine is on Monday.  Fingers crossed for both of us. 
  7. 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 ❤️
  8. 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.  
  9. 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!!
  10. 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
  11. 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.  
  12. 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.  
  13. 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?   
  14. 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 
  15. 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
  16. 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. 
  17. Like
    Curt got a reaction from Mally in Accidentally discovered 17 x 10 nodule   
    My follow ups after my negative PET were CT Scans every six months.
  18. Like
    Curt reacted to Troy2 in Accidentally discovered 17 x 10 nodule   
    The nurse just called and said that it came back all clear! They want me to have a PET in a year. I have not seen the detailed results yet.
    Does that sound about right? Would I be better off asking for one in six months? Or am I safe waiting for the year before getting another PET in your opinions?
  19. Like
    Curt got a reaction from Troy2 in Accidentally discovered 17 x 10 nodule   
    Hi Troy.  Tom has provided good answered to your specific questions.  I’ll just add that the majority of nodules are benign so let’s hope your is.  If it does prove to be malignant there are lots of treatment options, including surgery.  Stay away from Dr. Google.  Much of that info is outdated and misleading.  There are treatment options.  If you are looking for answers read through the posts on this site and ask your questions here.   
  20. Like
    Curt reacted to Tom Galli in Accidentally discovered 17 x 10 nodule   
    Troy,
    I'm assuming your nodule size is in millimeters.  If so, the nodule size would translate to about 3/4" by 1/2". The PET scan result should provide the important information -- is the nodule malignant. Here is some information about a PET scan that may help you understand the results when your receive them.  The results should tell is two things: is the reported nodule malignant and is it the only one.
    A single malignant nodule, depending on its location, can be addressed with surgery. Here is some information about lung cancer surgery that might be helpful. So I hope you get a favorable PET report.  More questions? This is the place.
    Stay the course.
    Tom
  21. Like
    Curt got a reaction from Lisa L in SCAN   
    AMAzing!  Big Cedar Lodge sounds amazing too.  Enjoy.  
  22. Like
    Curt reacted to Lisa L in SCAN   
    Just had 3rd ct, this one a super D in case of growth they could do a biopsy. Good news it hasn’t changed, still the same after 8 months, so my pulmonologist said no need for biopsy now, he still feels like it’s small for one anyway.  I have been having scans every 4 months and now it will be 6 months.  Gonna go to Big Cedar Lodge for the weekend and relax and be thankful.  I’ve had several people reach out to me and ask how it went, everyone on this forum is wonderful and special to me. Love and Light ❤️
  23. Like
    Curt got a reaction from Roz in Nodule & VATS   
    Hi Steph.  I also had a small (8 mm) nodule discovered by accident.  I am 43.  We watched it for a year.  I’ve never smoked and it didn’t grow but it was spiculted and I have a family history of lung cancer.   I did have a PET but it did not “light up”.  Small and slow growing cancers often don’t.  After a year of watching I opted to have a wedge resection.   I was told the same thing that it was too small for biopsy.  During the resection they found it was Stage 1 Adenocarcinoma.  They proceeded with a full upper right lobe lobectomy.  The surgery was not as bad as I expected and I’ve made a full recovery.  I go for scans every six months to check on things.   The watching and diagnosis phases are terrifying.  The uncertainty is difficult.  Take it one step at a time.  Avoid Dr. Google.  If you have questions or concerns ask them here.  We will do what we can to help get you through this.  
  24. Like
    Curt got a reaction from Tom Galli in Nodule & VATS   
    Hi Steph.  I also had a small (8 mm) nodule discovered by accident.  I am 43.  We watched it for a year.  I’ve never smoked and it didn’t grow but it was spiculted and I have a family history of lung cancer.   I did have a PET but it did not “light up”.  Small and slow growing cancers often don’t.  After a year of watching I opted to have a wedge resection.   I was told the same thing that it was too small for biopsy.  During the resection they found it was Stage 1 Adenocarcinoma.  They proceeded with a full upper right lobe lobectomy.  The surgery was not as bad as I expected and I’ve made a full recovery.  I go for scans every six months to check on things.   The watching and diagnosis phases are terrifying.  The uncertainty is difficult.  Take it one step at a time.  Avoid Dr. Google.  If you have questions or concerns ask them here.  We will do what we can to help get you through this.  
  25. Like
    Curt reacted to Tom Galli in New update   
    Ron,
    Read this. Then, write an email to [email protected] per the last paragraph of the blog. Note, if you choose National Institute of Health (NIH) as a treatment provider, you'll need to travel to Bethesda, MD for treatment, but travel and lodging cost is paid for by the NIH.
    Stay the course.
    Tom
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