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Curt

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  1. 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
  2. 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.
  3. 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
  4. 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
  5. 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.
  6. 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
  7. 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
  8. 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
  9. Like
    Curt got a reaction from Susan Cornett in CT results   
    Awesome Susan.  You are a rock star!   
  10. 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
  11. 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
  12. 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
  13. 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. 
  14. 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
  15. Like
    Curt got a reaction from G.A.M. in One week checkup with the surgeib   
    Leaky loves and air in your chest after surgery does happen.  In most cases it resolved itself.  In some, likeTom’s, it requires another surgery to fix.   
  16. Like
    Curt reacted to Rower Michelle in Any tips for severe muscle fatigue??   
    Thank you guys- awesome.  We are on the right track.  In some way we were prepared for this. when I started Alectinib, the muscle pains were really terrible. The stairs may as well have been MT Everest.  I did everything I could conceivably think of because I didn’t want to have another dose reduction or come off the meds altogether    
      
    DFK-  I really tried to plan ahead and sent him to PT for six weeks.  So I guess it could have been worse. I’ve got the high quality bands, myofacial release roller, the message therapist and a rehab trainer.
    Curt- I’ve taught him some Qi Gong moves that can be done surreptitiously (he’s a tall guy like DFKs husband- whose gonna mess with him if it looks silly??). He LOVES your suggestions, hahaha- he will be treated like a king.  He got quite the chuckle out of it.  
     
    Tom- hubby isn’t much of a bath guy but I did get him into epson salts- only complaint was it smelled too “girly”.  
     
    We have great insurance now through my former employer but after month 19 of COBRA the premium will increase 150%, the “affordable plans” on the Exchange were not much better.  Hopefully we’ll be able to drop COBRA. 

    I’m pretty optimistic this will work out- where else can you get a comprehensive benefit package, work 17 hours a week and show up in ratty old clothes?  
    Love you all! 
    Michelle
     
  17. Thanks
    Curt got a reaction from Rower Michelle in Any tips for severe muscle fatigue??   
    RICE it.  Rest, Ice (I use to take ice baths in college), Compression and Elevation to recover once you are sore   
    Stretching before he goes to work and after (after being the last thing he’ll want to do) will eventually prevent him from getting sore   
    Staying hydrated during the day while working.  
    Eating high quality Proteins throughout the day   
    Lots of love, attention and appreciation.      
     
  18. Like
    Curt got a reaction from LouT in Pain   
    Hello @s_n_perkins.  I’m sorry to hear about your husband’s surgery.  Open thoracic surgery is tough.  I can only add constipation as a possible culprit to Tom’s already thorough response.  Surgery and the pain medicine can cause constipation.  That can be very painful.  I opted to stop taking pain meds pretty soon after surgery to avoid the pain caused by constipation.  I had VATS surgery, open surgery is a whole other ball game.  I hope the pain subsides soon for him.  
  19. Like
    Curt reacted to PaulaC in Two year survivor!   
    I’ve been outbof the loop for awhile but wanted to give an update. 
    Today marks two years since I was diagnosed and I’ve been NED for a year and half. I have my next ct scan in a couple weeks and looking forward to positive results.
    I need to get in here and catch up with you all. 
    Take Care
    Paula
  20. Like
    Curt got a reaction from Tom Galli in Chest tube pillow   
    Hello @JennO.  I used a small, firm coach pillow to carry around after surgery.  It did a few things for me.  It propped my arm up so it wasn’t resting on the chest tube and later the incision area.  That helped while sitting and walking.  I used it to prop up my arm while sleeping as well.  I also squeezed it when I would cough or sneeze.  Your mom is going to need to do a lot of coughing.  It’s part of the healing process.  The pillow will help.  
     
    I second Bridgets recommendation about a firm wedge pillow for bed.  The pillow will keep your moms head elevated while she is in bed.   It helped me a lot.  
     
    The chest tube will likely remain in until the air in your moms chest is cleared out.  That tube is uncomfortable.  It will be less painful when it’s removed.  Mine was removed after three days.  I was petrified to have it removed.  The so Otis kept saying it oils not hurt.  Turns out they were right.  The tube came right out and I felt immediate relief.  
     
    They are pretty rough on your body during surgery.  They put you in strange positions and move your body around a lot in order to perform the procedure.   That plus the obvious trauma of the incisions and removing a lobe of your lung causes a lot of swelling.  It took me about two weeks for the swelling to go down and about a month for it to go away completely.   
    The first few days after surgery are tough but she will start to feel better quickly.  Getting the tube out will be the first step in that process.  
     
     
  21. Like
    Curt got a reaction from JennO in Chest tube pillow   
    Hello @JennO.  I used a small, firm coach pillow to carry around after surgery.  It did a few things for me.  It propped my arm up so it wasn’t resting on the chest tube and later the incision area.  That helped while sitting and walking.  I used it to prop up my arm while sleeping as well.  I also squeezed it when I would cough or sneeze.  Your mom is going to need to do a lot of coughing.  It’s part of the healing process.  The pillow will help.  
     
    I second Bridgets recommendation about a firm wedge pillow for bed.  The pillow will keep your moms head elevated while she is in bed.   It helped me a lot.  
     
    The chest tube will likely remain in until the air in your moms chest is cleared out.  That tube is uncomfortable.  It will be less painful when it’s removed.  Mine was removed after three days.  I was petrified to have it removed.  The so Otis kept saying it oils not hurt.  Turns out they were right.  The tube came right out and I felt immediate relief.  
     
    They are pretty rough on your body during surgery.  They put you in strange positions and move your body around a lot in order to perform the procedure.   That plus the obvious trauma of the incisions and removing a lobe of your lung causes a lot of swelling.  It took me about two weeks for the swelling to go down and about a month for it to go away completely.   
    The first few days after surgery are tough but she will start to feel better quickly.  Getting the tube out will be the first step in that process.  
     
     
  22. Like
    Curt got a reaction from YoureNeverAlone in So many people suffering, my heart breaks   
    Hello @YoureNeverAlone   Welcome to the site.  The news that anyone has lung cancer is shocking.   People diagnosed with lung cancer, like Rush, often have no symptoms until it is at an advanced stage.  Lung cancer is the leading cause of cancer deaths in the world, it accounts for 25% of all cancer deaths.  Lung cancer was always viewed as a disease that older people who smoked got.  More and more young people and people who have never smoke are developing it.  I was 42 and never smoked.   I hate that Rush has this disease but I am encouraged that his fight might bring more awareness to it.  More people need to talk about it and bring awareness to it.   
  23. Like
    Curt reacted to TJM in Weather gorgeous. So took a walk   
    Another absolutely beautiful February day in the Great Northwest. So another walk. Same as yesterday. Will do it a couple more times and then add some distance. 
    Peace
    Tom
  24. Like
    Curt got a reaction from Opal in So many people suffering, my heart breaks   
    Hello @YoureNeverAlone   Welcome to the site.  The news that anyone has lung cancer is shocking.   People diagnosed with lung cancer, like Rush, often have no symptoms until it is at an advanced stage.  Lung cancer is the leading cause of cancer deaths in the world, it accounts for 25% of all cancer deaths.  Lung cancer was always viewed as a disease that older people who smoked got.  More and more young people and people who have never smoke are developing it.  I was 42 and never smoked.   I hate that Rush has this disease but I am encouraged that his fight might bring more awareness to it.  More people need to talk about it and bring awareness to it.   
  25. Like
    Curt reacted to TJM in Weather gorgeous. So took a walk   
    Took a pain med about two hours ago and basically pain free. Sun setting on a glorious winter evening so I decided to do what I should have done days ago. Took a walk.
    To be honest I am very pleased. Breathing was heavy but no coughing and didnt have to stop. I'm guessing about a mile total.  25 minutes. Walked with my son.
    Good day.
    Peace 
    Tom
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