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Curt

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  1. Like
    Curt got a reaction from LouT in Another newbie ... Still a bit in shock   
    He’ll still be able to be active after some rehabilitation.  My lung capacity is the same as it was pre surgery.  Scuba diving may be a longer term challenge, especially if you are going deep.  It would be an awesome goal to work towards though.  Definelty would inspire others.
  2. Like
    Curt got a reaction from BridgetO in Why is Mom being difficult?   
    Hi @Fletch   I’m sorry to hear about your moms diagnosis.  Cancer is a really tough disease.  Being scarred shitless is completely normal.  The word cancer will illicit fear universally.  I’ve dealt with it as a care giver to my father and now a patient myself.  Your mom is surely going through a lot of emotions right now.  A cancer diagnosis is a roller coaster.  Cancer treatment can be absolutely brutal.  My father was diagnosed at stage IV seven years ago and opted for the standard treatment regime available at the time.  Based on the statistics at the time I was torn between him getting the treatment or just living his best life with the time left.  He wanted treatment and I supported that.  He lived ten months after diagnosis and those were ten very difficult months for him.  Cancer treatments have progressed significantly since then and prognosis have improved, but the fight is still a difficult one to endure.  People are usually more willing to fight when they feel like they have something to fight for.  A milestone in their life or a loved one that they don’t want to miss is often a strong motivator.  My advice is get the real skinny from the doctors.  Are the treatments she is under curative or palliative?   If they are curative what are the odds?  If they are palliative what does it look like if she doesn’t take them? Doctors are trained to follow very specific courses of actions based on stage and prognosis.  They sometimes don’t consider quality of life as strongly as they should.  Your mom may not be in a place where she can easily absorb all of that.  Once you have the info talk through it with her so she can make an informed decision.  Also tell your mom that you love her, tell her that you don’t want her to die and want her to fight.  Then tell her that it is her decision and you will support whatever she decides.  That last part is really important.  You need to let her know how you feel and also let her know that it is her decision and you will support it.  Making the decision not to fight and enjoy your quality of life with the time you have left is often viewed as selfish...it is also often viewed as brave.  As long as the decision is well informed, deciding to fight or not to fight are two incredibly brave decisions.  
     
    I also recommend finding a local caregivers support group.  This will be an unbelievably  stressful time for you and your family.  Having a support system will help tremendously.  This group will surely stand in where we can.  You’ll find support from both patients and caregivers here, but having someone or a group to talk to in person will also help.  
     
    Hang in there.     
  3. Like
    Curt got a reaction from BridgetO in Why is Mom being difficult?   
    No worries about the “tantrum” @Fletch.  It is completely understood given what you are going through.  Watching someone you love go through this is excruciating.  It is a roller coaster of emotions.  I hope the doctors find a better solution for your mom.  Hang in there.  
  4. Like
    Curt got a reaction from DFK in Durvalumab   
    I got the flu shot.  I was warned I may feel some mild symptoms shortly after.  
  5. Like
    Curt got a reaction from DFK in Durvalumab   
    First I’d like to say that this topic and everyone on it is inspiring.  850+ posts and still going.  You are all amazing!
     
    I read this article in the Times today.  Seems relevant to @Rower Michelle post.https://www.nytimes.com/2019/10/24/well/eat/fiber-and-yogurt-tied-to-lower-lung-cancer-risk.html
    I dug a little deeper and found this article as well.  https://www.medpagetoday.com/hematologyoncology/lungcancer/82933

    I was briefly in to making my own Kefir.  I may get back into it.  It’s an amazing source of natural probiotics.  
  6. Like
    Curt got a reaction from Tom Galli in Spiculated nodule   
    Three to four years with no change is a reasonable indication of those spots being benign.  Adenocarcinoma in-situ cells are, for lack of a better word, pre-cancer cells that can turn into cancer.  You will likely only need to remove those cells and not the entire lobe.  They call that a wedge resection.  It is the same VATS surgery but with less lung removed.  
     
    Nerves and anxiety are normal given your situation. Try finding a local support group.  They may help.  If the nerves are getting in the way of your living a normal life then speak to your doctor about it.  They may be able to prescribe something.
     
     
     
  7. Like
    Curt reacted to Punky in Stage IIIA Lung Cancer   
    I also had stage 3a.  Surgeon wouldn't operate at 1st because the operation would have left me with too much pain.  Had 4 chemo sessions along with a month of radiation.  My tumor shrunk over 70% after the radiation and the radiologist said it might even be dead.   Surgeon thought he would have to take it out in pieces because of the location and was planning a 8 hr operation.  He ended up doing a vats and said when he took a hold of the tumor it all  came out in one piece.   The margins were clear.  He said to me you have a chance of beating this.  I am now on adjuvant therapy hopefully if any small tumors are left they will be  and killed.  Hang in there, I live everyday praying the surgeon is right and I can beat this.   
  8. Like
    Curt got a reaction from BridgetO in 8mm nodul with spiculated   
    @april barrow with anything less than 10 mm they will likely just monitor it with CT scans every six months.  If it grows they will do a PET scan.  If it doesn’t they will just continue to monitor it.  The nodule you have is VERY small.  The majority of nodules are NOT cancer.  
  9. Like
    Curt reacted to Rower Michelle in Pet scan & pathology results back   
    Hi Robert,
    This is a good outcome, Stage 3B is fairly rare as most lung cancers are diagnosed at Stage IV.  The key here is treatment is administered with curative intent. Because it’s rare, the treatment plan can be pretty complex so when the biomarker tests come in you may very well want to get a second opinion to ensure your wife’s treatment plan is well positioned for the long term. 
     
    The never smoker comment means your oncologist has a hunch about the possibility of a biomarker.  Approximately 60% of newly diagnosed lung cancers occur in never smokers.  For some unknown reason the never smokers are more likely to have a genetic driver, oncogene, biomarker, driver mutation (all means the same thing Ugh!) which responds to pills called targeted therapy.  There are 9 biomarkers that have targeted therapy, the most “common” are called EGFR, ALK, ROS1 or KRAS as a few examples. 
     
    The only real question I would ask about in this scenario is the rationale for immunotherapy.  I would really push on this as it’s being discovered immunotherapy (IO) does not work if there is a biomarker present and in fact may be harmful.  If you wife has ALK then immunotherapy will be of zero help, probably the same for EGFR and ROS1.  
     
    The chemo isn’t a piece of cake however the medical team will do everything to make this manageable, your wife will need to over communicate   during treatment there’s no need to power through, there’s so much that can be done to address chemo side effects.
    Keep us posted as you can so we can jump in to help.  All of this is really good news.
    Michelle
     
  10. Like
    Curt reacted to Tom Galli in Pet scan & pathology results back   
    Robert,
    This may be of help right about now.....
    Stay the course.
    Tom
  11. Like
    Curt reacted to BridgetO in Spiculated nodule   
    Hi Beth,  Where is your tumor located? Early stage lung cancers are usually not associated with any symptoms,  Pancoast tumors can cause pain in the shoulder and arm, but I don't know how advanced they have to be to do that. A Pancoast tumor is located in the very upper end of the lung and can cause pain by interfering with structures outside the lung. (there  aren't a lot of nerves  in the lung itself). Pancoast tumors are pretty rare. 
    If your nodule is malignant, it's will probably be early stage and curable.  I had  a nodule of similar size to yours that was removed by VATS (laparoscopic surgery)  The surgery was pretty easy, as surgery goes, and I am well now, 3 years later, with No Evidence of Disease (NED, a term you'll see often on these forums). 
    I encourage you to keep us informed and ask any questions you have. Let us know how we can support you. That's what we're here for.
    Bridget O
  12. Like
    Curt got a reaction from Barb1260 in Durvalumab   
    I got the flu shot.  I was warned I may feel some mild symptoms shortly after.  
  13. Like
    Curt reacted to Rower Michelle in Cardiac Results   
    Hi All
    My cardiac studies are in, so far everything is within normal limits which is good news.  I tracked down the actual CT report where mild pulmonary edema is noted, likely due to fluid overload. 
    I’ve started the Lasix/Potassium so far no changes in my weight yet.  I wonder if they will increase the dose when I see the oncologist on 11-8. 

    I met with my pharmacist yesterday to obtain guidance on fluid intake required- all good there too. 
    We’re heading to Iowa City on Monday to see the Integrative Team in search of other strategies.  
     
    It’s been a year since my last hiccup on the inhibitor so that’s not so bad.  Hopefully this is just a short term curve ball.  Off to Tai Chi this afternoon.
    Michelle
     
  14. Thanks
    Curt got a reaction from BridgetO in Change or Role   
    I hope for a quick recovery.  
  15. Like
    Curt got a reaction from Roz in Tingling in hands and arms   
    Nerve pain is a very common side effect of any surgery.  It is particularly prevalent in lobectomy recovery.  I’m eight months out and still have nerve pain on my side.  Nerve pain is also pretty common when the body is under emotional stress.  The lead up to scans is always emotionally stressful for me.  Neck issues can also be the culprit. Definitely let your doctor know of the change.  It may prompt them to look in areas they may not have.  I know it’s easier said then done but try and find something to keep your mind off the upcoming scan.  Hang in there.  
  16. Like
    Curt got a reaction from Charles in Durvalumab   
    First I’d like to say that this topic and everyone on it is inspiring.  850+ posts and still going.  You are all amazing!
     
    I read this article in the Times today.  Seems relevant to @Rower Michelle post.https://www.nytimes.com/2019/10/24/well/eat/fiber-and-yogurt-tied-to-lower-lung-cancer-risk.html
    I dug a little deeper and found this article as well.  https://www.medpagetoday.com/hematologyoncology/lungcancer/82933

    I was briefly in to making my own Kefir.  I may get back into it.  It’s an amazing source of natural probiotics.  
  17. Like
    Curt reacted to Rower Michelle in Durvalumab   
    Thanks @Curt  Ok, we're under a winter storm watch here in KC (REALLY??).  Don't like to go outside when it's under forty! Snow tomorrow. YUCK. 
    Anyway, I tracked downed the research summary from one of Saturday's presenters, Dr Zhang, from the University of Iowa (not the Dr. Wall of Shame Dude).  Here is the outcome on the AE and IO published in October, 2019.  
    https://www.cancertherapyadvisor.com/home/news/conference-coverage/iaslc-north-america/iaslc-north-america-2019/gut-microbiome-lung-cancer-risk-immunotherapy-treatment/
    Here is the link about this from MD Anderson that was also discussed: 
    https://www.cancertodaymag.org/Pages/cancer-talk/October-11-The-Week-in-Cancer-News.aspx
    I was taking one of those OTC pre and probiotics and the first thing my Integrative Medicine Doctor at the University of Iowa did was tell me to discontinue, even though I take take targeted therapy. 
    I tried the DIY keifer it was just too gross for me so I buy mine to make chia pudding.  Here's the recipe: 
    1 Cup Keifer 
    1/4 cup chia seeds
    1 tsp of cinnamon
    1 tsp of maple syrup 
    You can add things like a table spoon of oats, barley, rye or blueberries 
    Place in a jar, shake it up and viola two to three hours later you've got "pudding".  
    Chow! 
     
  18. Like
    Curt got a reaction from Tom Galli in Spiculated nodule   
    Hi @GiGi71.  I had an upper right lobe lobectomy at the end of February via VATS.  The surgery and recovery is different for VATS (laparoscopic) and a thoracotomy. I was also worried about all the things you’ve mentioned and crying a depressed.  It is a really scary thing you are confronting.  It is not as bad as you are envisioning.   I had the surgery on Tuesday night and left the hospital on Friday.  I was NOT intubated (tube down your throat) when I woke up.  I was petrified of that being the case but it wasn’t.  I did NOT have a Foley in when I woke up.  You will have a drain in your side that drains the fluid out of your chest cavity.  It is uncomfortable but not painful.  I was terrified of them removing it but it did not hurt.  It was more of a relief when it was gone.  I was up and walking the morning after my surgery.  Recovery took me about six weeks to be fully recovered.  I do still have some numbness near my incisions and tightness (pulling) when I cough.  My breathing is back to pre-surgery levels.  The surgery was nowhere near as bad as I envisioned.  The recovery was easier as well.  I’m not saying it’s a walk in the park but I had visions of my being completely debilitated and walking around on oxygen.  That was not the case.  Some recommendations:
    - Walk and do the spirometer breathing as much as possible before and after the surgery.  It will help with your recovery.  
    - Stay on the pain medication for the prescribed amount of time.  Don’t be a hero.  I learned this the hard way.  
    - Find a way to prop yourself up in bed.  A foam wedge pillow will do the trick.  
    - Set an arm chair up so that you can sit in that when out of bed.  
    - Find a small, firm pillow to carry around and hug while you are sleeping.  I used a decorative couch pillow. If helped keep my arm from laying on my incisions while I was up and moving around.  I squeezed it when I coughed and sneezed.  
    - Cough.  It is good for lung recover.  
    - Rest.  I was exhausted for the first two weeks after surgery.  I describe it as clinically exhausted.  I’ve never been they tired in my life.
    I’m sorry you have to have this surgery but I’m glad you found this site.  It is very manageable and a very affective treatment option.  I’ve required no follow up treatment after my surgery.  Just periodic scans to check on things.  Hang in there.  If you have any other questions please ask.  I’m happy to share.     
     
       
     
     
  19. Like
    Curt reacted to Rower Michelle in Durvalumab   
    Hello to The Durva Club-
    I wanted to pass this information along to you-
    On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event.  I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks.  “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience.  He wasn’t a positive see the bright side of life type of Doctor. Shame on him!!
    Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s).   It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome.  Too much of “good thing” is bad for you. 
     
    those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva.  

    In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. 
     
    You guys inspire me! 
    Michelle
     
  20. Like
    Curt reacted to Jephkay23 in Update after 2.5 years   
    I do not expect anyone to remember me, but back in July of 2017, my wife was diagnosed with Stage IV. 10 tumors all over the place. 
    Last week, she was given the option to discontinue treatment, as they couldn't find the cancer any longer. 
    There is hope. 
  21. Like
    Curt reacted to MBinOregon in CT Results (good) and Burpees (?!)   
    I had my first 6 months scan yesterday (I had four 3-month scans til last April) and fortunately I only have to wait about an hour as my beloved radiation onc tells me the results.  ALL GOOD, he said.  "oh good" - I must have sounded very unenthusiastic (I'm usually very animated) cuz he said "so you don't look relieved, what's still worrying you?"  I wasn't sure.  This scan was a lot more nerve wrecking than others perhaps because I had never gone that long without being scanned and my scanxiety was pretty bad.  So I was very relieved but I guess it wasn't sinking in right away. Silly me.  No worries, though, it finally hit me as I was brushing my teeth last night, so I was shaking my money maker to Gloria Gaynor's "I'll survive".  My poor dog, somethings can't be unseen...
    A couple of days ago, a coworker of mine (who runs ultra marathons - as in he runs 50 miles at a time for fun.  Nuts.) challenged me to a "burpee off" during a banter - if you don't know what a burpee is, that one, you can google (medical stuff, don't google).  I love it, but most people hate it with passion.  Because I've always looked so healthy(?!) throughout my LC journey, only a handful of my coworkers know about my diagnosis and he's not one of them.  Before last May (surgery), I'd have called his bluff out and done it right then and there with my high heels and all, but ever since I've become a single lung holder, any burst of movement makes me out of breath, so I hadn't done any burpee since the surgery.  But how dare he challenge me! I thought.  So I did 10 last night to see 1. if I can do it and 2. how long it'd take me to do 10.  Took me 31 seconds, not bad for not having done one over a year.  Of course I was totally out of breath and felt dizzy, but dang it, I will kick his butt! 
    MB
  22. Like
    Curt reacted to Deb W in Upcoming CT scan & MRI Monday   
    The oncologist said overall it looks good.  I'm going to take that as excellent news because I don't have to go for another scan until April so I'm back on the 6 month scan interval until 2 years pass.  Thank you for your thoughts and good wishes.
    Deb
  23. Like
    Curt reacted to Rower Michelle in The Results... mostly good news!   
    Hi All
    I saw the onc this morning for the CT results. Short answer: the cancer is STABLE.  The tumor is staying small- 1.1 CM.  This is considered an excellent result.  The doc said he was very pleased.  
    I asked about targeted radiation for the residual tissue and he felt it wasn’t necessary at this time but could be an option in the future.  
     
    The CT did pick up on some cardiac fluid which is most likely a side effect of the targeted therapy.  This also explains the mysterious six pound weight gain. We’re starting Lasix regularly with a precautionary cardiac work up next week.  I’ll return to the onc in two weeks.  

    One year ago today I stumbled into this forum, so my humble thanks for getting me over the first year line.  So glad to be a part of this family. 
     
    Carry on! 
    Michelle
     
  24. Like
    Curt reacted to Rower Michelle in Just got back from Pulmonologist.   
    Hi Robert-
    So now you are beginning the diagnostic process.  You’re correct in that there’s not much the oncologist can do at this point until the biopsy report comes back from pathology.  That usually takes about 48hours however can be up to 3-5 days. 
    Ask the oncologist about biomarker testing.  Depending on the biopsy it’s critical to have comprehensive biomarker testing (which is also called a full panel, oncogene testing, or next generation sequencing-all different names for the same thing).  Some hospitals only do tests for a few biomarkers but with personalized treatment the comprehensive testing is the most important part of this process.  
     
    The second question I would ask the oncologist is how do they communicate with their patients In between appointments, what is their preference?   You also want to know what to do in case of an emergency (and what constitutes an emergency)  
    If at any time there is something that the doctor is attempting to explain that you don’t understand it’s perfectly okay to ask them to stop and slow down to explain in plain English.  You might also ask if you can record the visit if you want.  

    Keep us posted when you can.  I hope it goes well. 
     
    Michelle 
     
     
  25. Like
    Curt reacted to Tom Galli in Not really sure if I should be here or not   
    David,
    Sorry to learn of your diagnosis and of your troubling path for getting information. Every time I read of someone's new diagnosis I recall the confusion and fear of my own. Understanding lung cancer (any cancer for that matter) like trying to learn to speak, read and write a foreign language in a week.  This may help you navigate your road toward development of a treatment method.
    We will help you master your new vocabulary. We share a diagnosis -- squamous cell -- and while it does not respond to targeted therapy, it does respond to immunotherapy.  Therefore, I strongly suggest your first ask of your oncologist is to have your biopsy tissue sent for to determine your PD-L and PD-L1 profile.  
    Stay the course.
    Tom
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