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Curt

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  1. Like
    Curt reacted to TJM in 358 Days Post RUL Lobectomy - Diamond Head   
    Such an awesome post. Pin it in the good news Forum.
    Well done Curt!
    Peace 
    Tom
  2. Like
    Curt got a reaction from Steff in 358 Days Post RUL Lobectomy - Diamond Head   
    I convinced my wife to hike up Diamond Head Volcano in Oahu yesterday.  First I didn’t see any diamonds.  Second it has been dormant for 150,000 years.  Can you call a lake a lake if it hasn’t had any water in it for 150,000 years?   What about a volcano that doesn’t have any lava?  Anyway that’s not the point.  The point is 358 days after I had my upper right lobe removed via lobectomy I hiked to the top of a volcano.  It’s not a big volcano, but it’s a volcano.     760’ at the highest peak.  We were told it would be about a half hour to get to the top.  My brain said we’d be there in 20 minutes.  45 minutes later we made it to the top.  About 15 minutes in I got scared.  The feeling that maybe I shouldn’t be doing this, maybe I couldn’t, set in.  My brain isn’t use to telling my body to pace itself.  It just runs off up a volcano without a thought in the world.  But then my body tells my brain that I need to slow down and pace myself.  There were some spots that added to my concern.  I got short of breath and had to stop a few times.  About two thirds of the way up there is a 225’ long walking tunnel.  The air felt kind of tight in there.  Maybe it was just Claustrophobia. As soon as I got out of the tunnel I was confronted with 99 steps, felt more like a ladder.  After that a few flights of spiral stairs in an old military concrete building.  Then the final 76 steps to the top.  Most people say the view at the top is worth the effort.  For me the view was secondary to the accomplishment I felt getting up there at all.  
     
    If I can do it so can you. Mahalo!



  3. Like
    Curt reacted to Lisa L in No diagnosis yet   
    I’m watching your story pretty close, I have 9mm nodule in left lung found a year ago, said spiculated.  I freaked out to say the least thought I had 6 months to live, was a total mess.  I found this group and immediately calmed down and felt so loved by a group of people I had never met.  First thing I did was get a fab pulmonologist, he ordered a Pet and it came back no uptake at all, had a ct 4 months later  and nodule was the same so had ct 4 months later and again the same so my pulm says it’s either benign or cancerous but indolent and might never even hurt me in my lifetime, I’m 53.   I have another ct scheduled at end of month but guess what insurance denied it so got to go through the whole loop hole and prob will have it end of March, I’m fine with that and My pulm is fine with us continuing to scan probably forever even if I would have to pay out of pocket.  I’m so glad you found this group, I’m glad you have a good team with a plan, just wanted to share my story. Love and Light ❤️
  4. Like
    Curt reacted to Lisa L in 358 Days Post RUL Lobectomy - Diamond Head   
    Yay Curt!!!!!!   Mahalo
  5. Like
    Curt got a reaction from ColleenRae in 358 Days Post RUL Lobectomy - Diamond Head   
    I convinced my wife to hike up Diamond Head Volcano in Oahu yesterday.  First I didn’t see any diamonds.  Second it has been dormant for 150,000 years.  Can you call a lake a lake if it hasn’t had any water in it for 150,000 years?   What about a volcano that doesn’t have any lava?  Anyway that’s not the point.  The point is 358 days after I had my upper right lobe removed via lobectomy I hiked to the top of a volcano.  It’s not a big volcano, but it’s a volcano.     760’ at the highest peak.  We were told it would be about a half hour to get to the top.  My brain said we’d be there in 20 minutes.  45 minutes later we made it to the top.  About 15 minutes in I got scared.  The feeling that maybe I shouldn’t be doing this, maybe I couldn’t, set in.  My brain isn’t use to telling my body to pace itself.  It just runs off up a volcano without a thought in the world.  But then my body tells my brain that I need to slow down and pace myself.  There were some spots that added to my concern.  I got short of breath and had to stop a few times.  About two thirds of the way up there is a 225’ long walking tunnel.  The air felt kind of tight in there.  Maybe it was just Claustrophobia. As soon as I got out of the tunnel I was confronted with 99 steps, felt more like a ladder.  After that a few flights of spiral stairs in an old military concrete building.  Then the final 76 steps to the top.  Most people say the view at the top is worth the effort.  For me the view was secondary to the accomplishment I felt getting up there at all.  
     
    If I can do it so can you. Mahalo!



  6. Like
    Curt reacted to DFK in Durvalumab   
    Happy Friday to All,
    February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕
    Questions I had for Oncologist
    1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.

    R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 
    2) What now? 
     
    R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
     
    Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.
    I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 
    Thank you everyone for your support. 
    Take care, DFK
     
  7. Like
    Curt got a reaction from Rower Michelle in No diagnosis yet   
    @LyndaT I had an 8mm spiculated nodule that had an inconclusive uptake on the PET scan.  I watched it for a year.  I have a pretty significant family history of lung cancer.  A year in the doctor said that I should just take it out.  I was 42.  If it wasn’t cancer then the procedure would be pretty easy, if it was the recovery would take a bit longer but I wouldn’t notice a difference in quality of life (unless I wanted to run a marathon).  Given my family history I opted to have it removed.   It turned out to be stage 1 NSCLC Adenocarcinoma.  They removed my upper right lobe right then and there.   Surgery was not as bad as I imagined and recovery has been good.  A few small lingering issues but no follow up treatment and NED since.  Cancer, lung cancer in particular, is aggressive.   The earlier and move aggressive you can deal with it the better in my opinion.  I’d go through all the steps to get as much info as you can to determine what it is, then go after it with as much as you feel comfortable throwing at it. 
     
    I really hope there are more definitive diagnostic options for this in the future.  I find the process of diagnosing lung cancer for early stage patients to be very archaic.   A bunch of fuzzy scans and dated tests.  I’ve read some more promising techniques are on the horizon.  I hope some of them come to fruition.   
     
    Hang in there.   
  8. Like
    Curt reacted to LUNGevityKristin in 358 Days Post RUL Lobectomy - Diamond Head   
    That is amazing!  Great job!
  9. Like
    Curt reacted to Rower Michelle in 358 Days Post RUL Lobectomy - Diamond Head   
    You’re a good man Charlie Brown!  Tooling around volcanoes one year after the “big” event. This sure beats the deck power washing celebration by a million miles!  Rock on my “little brother!”   GO CURT GO!  Awesome!!  
  10. Like
    Curt got a reaction from Susan Cornett in 358 Days Post RUL Lobectomy - Diamond Head   
    I convinced my wife to hike up Diamond Head Volcano in Oahu yesterday.  First I didn’t see any diamonds.  Second it has been dormant for 150,000 years.  Can you call a lake a lake if it hasn’t had any water in it for 150,000 years?   What about a volcano that doesn’t have any lava?  Anyway that’s not the point.  The point is 358 days after I had my upper right lobe removed via lobectomy I hiked to the top of a volcano.  It’s not a big volcano, but it’s a volcano.     760’ at the highest peak.  We were told it would be about a half hour to get to the top.  My brain said we’d be there in 20 minutes.  45 minutes later we made it to the top.  About 15 minutes in I got scared.  The feeling that maybe I shouldn’t be doing this, maybe I couldn’t, set in.  My brain isn’t use to telling my body to pace itself.  It just runs off up a volcano without a thought in the world.  But then my body tells my brain that I need to slow down and pace myself.  There were some spots that added to my concern.  I got short of breath and had to stop a few times.  About two thirds of the way up there is a 225’ long walking tunnel.  The air felt kind of tight in there.  Maybe it was just Claustrophobia. As soon as I got out of the tunnel I was confronted with 99 steps, felt more like a ladder.  After that a few flights of spiral stairs in an old military concrete building.  Then the final 76 steps to the top.  Most people say the view at the top is worth the effort.  For me the view was secondary to the accomplishment I felt getting up there at all.  
     
    If I can do it so can you. Mahalo!



  11. Like
    Curt reacted to Tom Galli in No diagnosis yet   
    Lynda,
    Here is some insight into PET scan results and SUV uptakes.
    An SUV of 3.7 is on the margin of concern. My best recommendation is that you consult with a medical oncologist and or a pulmonologist and solicit their recommendations about next steps.
    Stay the course.
    Tom
  12. Like
    Curt reacted to MyWifeSCLC in No diagnosis yet   
    Hi LyndaT ... I feel for you and wish you weren't going through this. I have been hesitant to give my specific thoughts to others because they may prefer not being inundated with info. Im also a newbie. You had already indicated you've searched the internet quite a bit. I prefer lots of information as early as possible to be able to ask questions as soon as possible. I do know that you have to be careful with what you are reading on the internet. I think you should be concerned because the PET scan uptake is > 2.5; however, the node is relatively small which may be great for many reasons. Many small nodes are benign and we are all hoping that is the case for you. If it is cancer then a small node is good. My wife's pulmonologist had the best handle on what was going and maybe we just got lucky with him. Almost immediately he was directing what should happen next with my wife (testing, etc.). My wife and I try to think positive and deal with results as they come.
     
    Steve
  13. Like
    Curt got a reaction from Kate7617 in Mom newly diagnosed with Stage IV NSCLC   
    Hello.  I am sorry to hear about your mom’s diagnosis.  Lung cancer is a disease that grows quietly and is often discovered because of symptoms unrelated to the lungs.  It is usually a huge shock.  I am also a “mutant” with a Stage 1 NSCLC Adenocarcinoma with an EGFR Exon 19 deletion.   Like Lexi mine was caught early enough and was able to be treated with surgery.  I won’t have any follow up treatment.  The EGFR exon 20 mutation is one of the rarer mutations.   I do believe that the current TKI treatments, which Tagrisso is one, have been found to be ineffective with the exon 20 mutation.  I do believe there is a new TKI drug being developed called TAS6417.  This is all information you should consult with your doctor on.  Like Michelle said, research and treatments are moving quickly.  I found this link on TAS6417  https://www.biospace.com/article/releases/taiho-pharmaceutical-and-cullinan-oncology-establish-collaboration-to-develop-tas6417-novel-egfr-tyrosine-kinase-inhibitor/
    I’m glad you found this site (but sorry you had to), check back with questions and updates when you need to.
  14. Like
    Curt reacted to C_Jean in new here   
    Thanks everyone for the kind words of encouragement! 
      You're right, Michelle,  i can't force my sister to eat like I would (total whole food) in this case, but she IS trying to eat better. I can't seem to convince her white bread is not a good thing.  Her local doc is not helpful here.    I've given suggestions, but ultimately, it's her call.  
    I'll look at the Multi-Nutrients and maybe order some for her, THANKS Tomm.  It may carry more weight for her since it was formulated by a Cancer Center...
     I appreciate all your thoughts so much.  I know you know the journey ahead won't be easy, but we will get thru w/ God's help. 
    c.Jean
  15. Like
    Curt reacted to TJM in Awesome surprise   
    Unfortunately we lost our pup of 14 years in October last year before I was diagnosed. Bucky was a great dog...actually half cat....and he has been missed.
    Tonight my incredible family just introduced me to a new puppy. St Charles Cavalier (brown with white patches). Same breed as Bucky.
    So....I see a lot more walks in my near future. And the rare but fun task of training. What a great gesture.
    Peace
    Tom
  16. Like
    Curt reacted to Blossomsmom in Reoccurrence and hospice   
    Thank you Tom and Curt for your kind words. I often feel like I’m stumbling around in the dark when it comes to doing the right things for my Mom. There’s such a fine line between making sure she’s ok and trampling in her independence. Trying to take it as it comes. Some days I’m successful others not so much.
  17. Like
    Curt reacted to Moonbeam in Checking in and missing not updating   
    Want to hear how everyone is doing? Praying everyone is well and managing with lots of strength and determination. There isn’t a day that goes by where I don’t miss my husband. His service is this weekend. A month exactly from when he passed. 😩
    I want to make sure that everyone hears me when I say “you got this” and don’t think that my husband’s story is an outcome for anyone who is fighting this battle. Yes, it happens but LC didn’t get him. He passed from complications Ie. Aspiration Pneumonia. I’m still shocked and completely heartbroken but I truly believe the advances with this disease are incredible. Keep fighting. Keep being positive. Keep the strength and know “you got this!” Sending so much love
    XX
  18. Like
    Curt reacted to Rower Michelle in No diagnosis yet   
    Hi Lynda,
    You’ve already met some pretty great people here, good friends to have in this situation, we’ve all been there.  
    When looking to establish a diagnosis everyone has a PET/CT, brain MRI and a biopsy in a dizzying amount of time, then the hurry up and wait begins.  
    Think of the PET/CT as a way of fast tracking the diagnosis of every questionable lung nodule.  
    In the beginning the freak out meter is 110% for all of us.  When we think of lung cancer, what conjures up in our mind is the worst case scenario.  
    I’m going to be straight with you, yes your doctors need to assess if the nodule is malignant.  Lung cancer can be treated today like any other chronic disease such as diabetes.  Many people don’t know this, there have been more treatment advances in the last five years than the previous five decades.  There’s a very sophisticated process that helps guide a personalized treatment plan.  People in this forum have been living with this disease for years and living well.  
     
    It is our great hope and prayer for you that this is a false alarm.  Lou, Tom and Curt have given you some great advice.  Take this one test, one day at a time.  Break the day down by hour if need be.  You will get through this.  We’re here to say there are brighter days coming, in the meanwhile lean on us to help carry you through.  
    Michelle
  19. Like
    Curt got a reaction from BridgetO in Dana Farber INHERIT EGFR T790 Study   
    Hello @Yvonne S.  I have an EGFR exon 19 mutation.  I did not have the T790M mutation.  I was told I had no genetic markers indicating a family genetic connection to lung cancer.    I found that impossible given the fact that my paternal grandmother, my father and six of his nine siblings had it and now I do.  My paternal Great grandmother died of breast cancer that some think was probably lung cancer.  The doctor explained that some families are just predisposed to cancer.  He used the example that some families are predisposed to baldness.  There is no genetic mutation that causes that, just a genetic predisposition to it.  There are more advances on this front happening as we speak.  I found this article interesting.   https://www.sciencemag.org/news/2020/02/massive-cancer-genome-study-reveals-how-dna-errors-drive-tumor-growth
  20. Like
    Curt got a reaction from Susan Cornett in CT results   
    Awesome Susan.  You are a rock star!   
  21. Like
    Curt got a reaction from Rower Michelle in No diagnosis yet   
    Hello @LyndaT.  Tom has provided some great advice.  Tracking a lung nodule is stressful.   I wonder about the 80% number.  Where did you find that?  1.2 cm is still pretty small.  I’m glad you found us...and hope after tomorrow you don’t have to come back.  
     
    Here is a good resource on nodules.  https://www.thoracic.org/patients/patient-resources/resources/lung-nodules-online.pdf
  22. Like
    Curt got a reaction from TJM in No diagnosis yet   
    Hello @LyndaT.  Tom has provided some great advice.  Tracking a lung nodule is stressful.   I wonder about the 80% number.  Where did you find that?  1.2 cm is still pretty small.  I’m glad you found us...and hope after tomorrow you don’t have to come back.  
     
    Here is a good resource on nodules.  https://www.thoracic.org/patients/patient-resources/resources/lung-nodules-online.pdf
  23. Like
    Curt reacted to TJM in CT results   
    So. 18 months from today...say August 6th 2021 (will be my 60th Birthday so I fudged the date a tad) I expect to post an identical message.
    Congrats. Celebrate. Enjoy
    Peace
    Tom
  24. Like
    Curt reacted to Susan Cornett in CT results   
    Got my scan results today and I remain NED! I've been cancer free for 18 months. So, to those of you who are new or scared or both, know this: I was diagnosed as a stage IV patient 4 years ago. You can do this. 
  25. Like
    Curt reacted to TJM in No diagnosis yet   
    Welcome and sorry. I am about 2 months into this journey and can totally appreciate your position. 
    My advice....read thru all the posts and find people who have similar diagnosis and read their history.
    This site WILL give you hope and make you feel better. A solid diagnostic and treatment plan WILL reduce your stress. Treatment for lung cancer has made a step change and the fact you may have caught it relatively early WILL improve your options and your quality of life.
    But these are things you will find out as time goes by. Right now just focus on controlling your stress, educate your self on the disease, not the statistics and be a firm advocate for yourself.
    Wishing you all the best. Where you are right now is the worst it will get IMO...and you WILL feel more in control as time goes by.
    Peace
    Tom
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