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Curt

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  1. Like
    Curt got a reaction from LouT in I should have listened......   
    Constipation is a cruel side effect of the narcotic pain meds.  I transitioned to just taking them at night and then not at all as soon as I could.  I would alternate Tylenol and Motrin and take a narcotic at night if needed.   One strange side affect of the Tylenol is I would sweat a TON at night.  I’d have to change the sheets every morning.   
     
    You are already doing what you can to speed things up.   Walk, hydrate and eat high fiber foods.  This too will pass.   Pun intended.    
  2. Like
    Curt got a reaction from Fadi in Please help me help my mom   
    Hello @Fadi.  I’m very sorry to hear about your mom’s diagnosis.  What alternative treatment plan has your mom tried?   
    Has your mom been tested for any genetic mutations or biomarkers?   Having that done can help identify more specific treatments.   
     
     
  3. Like
    Curt got a reaction from TJM in I should have listened......   
    Constipation is a cruel side effect of the narcotic pain meds.  I transitioned to just taking them at night and then not at all as soon as I could.  I would alternate Tylenol and Motrin and take a narcotic at night if needed.   One strange side affect of the Tylenol is I would sweat a TON at night.  I’d have to change the sheets every morning.   
     
    You are already doing what you can to speed things up.   Walk, hydrate and eat high fiber foods.  This too will pass.   Pun intended.    
  4. Like
    Curt reacted to Susan Cornett in Sucess   
    Hey Tom - so impressed with your quick release! When I had my lobectomy, I was there for 6 days. I did have an interesting med combo so I really didn't care where I was. I will tell you that - almost 4 years later - I have permanent nerve damage. Hoped it would improve over time but no such luck. I've not seen many others mention this but I had terrible spasms. They weren't muscle spasms - something different - that were painful and would take my breath away. They lasted for about 3 months and then just stopped. 
    Keep working the spirometer and keep up your great attitude. Enjoy the good tunes as you recover.
  5. Like
    Curt got a reaction from Susan Cornett in NSLC IV - Stopping Treatment   
    Hello @dab.  I’m sorry your husband is going through this.  Deciding if/when to stop treatment is a difficult decision.  My father was diagnosed with Stage IV in February of 2012.   He went through chemo and radiation, immunotherapy was not available to him at that time.   Not knowing what was a symptom of the cancer and what was a side affect of the treatment was frustrating for him.  He was symptom free up until soon after he started treatment.  He too struggled with the side affects of treatment.  Michelle has pointed you in the right direction with having a very direct conversation with his doctors about the goals and their expectations for the treatments he is on.  What do they expect life expectancy and qualify of life to be like on them and the same if he’s not on them.  I found that doctors will often respond with things like everyone responds differently or we won’t know unless we try.   I have also found that if pushed a little harder and made to understand that you and your husband want the realistic, not default, answers they will give them.  
  6. Like
    Curt reacted to TJM in Sucess   
    Curt. The pain was from a full bladder. First straight catheter filled 1500 mills. RN only had a 1000 mil container. Actually pretty funny watching him scurry around. No idea why I couldn't urinate but probably a response to the morphine. Right now I like having the catheter....dont have to get up except to drain the bag.
    BTW...I wanted to respond to the women whose husband wants to stop treatment. Lost my older brother in the late 90's to Lung Cancer with home hospice. It was not planned very well and he suffered way more than he should have. The advice to plan and be honest was spot on.
    Peace
    Tom
  7. Like
    Curt reacted to Tom Galli in NSLC IV - Stopping Treatment   
    Dab,
    Welcome here.
    From your post I understand your husband's had first line therapy, and that therapy has stopped progression of his lung cancer ("doctors say his cancer is stable"). However, I assume the therapy did not eliminate his tumors, and his first line treatment caused vicious side effects that your husband does not want repeated. You ask what will happen if he decides to stop treatment. Likely, his tumors will increase in size and new metastasis will occur. 
    You are not sure what to do. Michelle introduced quality of life as an important factor while being treated with lung cancer, and I completely agree. Lung cancer treatment can be horrible to endure and when expected results don't materialize, considering future treatment becomes a tough decision.
    Here is how I would approach your dilemma. I'd ask my doctors to be forthcoming in predicting the probability of success of any suggested treatment. Then, I'd ask careful questions about the side effects of suggested treatment. If the probability of success is low and the side effects are high, I'd choose hospice care and live out the balance of my life without pain and able to enjoy my time left. 
    Stay the course.
    Tom
  8. Like
    Curt got a reaction from Rower Michelle in NSLC IV - Stopping Treatment   
    Hello @dab.  I’m sorry your husband is going through this.  Deciding if/when to stop treatment is a difficult decision.  My father was diagnosed with Stage IV in February of 2012.   He went through chemo and radiation, immunotherapy was not available to him at that time.   Not knowing what was a symptom of the cancer and what was a side affect of the treatment was frustrating for him.  He was symptom free up until soon after he started treatment.  He too struggled with the side affects of treatment.  Michelle has pointed you in the right direction with having a very direct conversation with his doctors about the goals and their expectations for the treatments he is on.  What do they expect life expectancy and qualify of life to be like on them and the same if he’s not on them.  I found that doctors will often respond with things like everyone responds differently or we won’t know unless we try.   I have also found that if pushed a little harder and made to understand that you and your husband want the realistic, not default, answers they will give them.  
  9. Like
    Curt reacted to Tom Galli in Why the ILSC (Hope Summit) is so important   
    In February 2004 when diagnosed with lung cancer, I went from being a happy and engaged participant in a satisfying life to a frightened observer of life with little control and no hope. I remember feeling alone, ashamed and afraid. Alone and ashamed because those in local cancer support forums treated me like I didn't belong---"I gave the disease to myself." Afraid because my survival probability was worse than bleak. Some survivors like to say I'm a Jurassic Era survivor; my diagnosis proceeded new and effective treatment methods, the establishment of the LUNGevity Foundation, and the Hope Summit.
    Now well after the Jurassic Era, we have this special place where lung cancer survivors and caregivers can gather and receive massive infusions of hope: The International Lung Cancer Survivorship Conference (Hope Summit). The conference is informative and interesting, but the power of the conference is The Gathering. It is an assembly that celebrates life. It proves no one is alone, casts out shame, and replaces fear with information and hope. 
    Get back to a satisfying life. Join us in Bethesda in April. Here's the link.
    Stay the course.
    Tom
  10. Like
    Curt reacted to Tom Galli in Please help me help my mom   
    Fadi,
    I gather your mom is being treated outside the Canadian Medical system by Sunridge Medical Wellness Center. The attached file you provided shows what are collectively known as naturopath treatments. There are touted success stories about naturopath curative treatments for cancer and other diseases, but there are also many treatment disappointments. Here is a weblink that has more details about naturopathic medicine.  
    My difficulty with suggesting clinical trials is I do not know the Canadian trial system. The US and Canada have different medicals systems and differing approaches to trial eligibility, methods, and practices. One of our forum members, Robert Macaulay, started a forum on his experience with immunotherapy drug Durvalumab as a clinical trial participant. Here is where you find his discussion board. Robert is a Canadian and seems to have insight into how the Canadians conduct trials. He might also have information about how to find where and when immunotherapy trials are being conducted in Canadian Medical Centers. When you pull up the Durvalumab link, hover your cursor over Robert's name and a window opens with a message link. You can use this link to write Robert a private, email like, message asking for his insight into Canadian immunotherapy trials. 
    I wish your mom the best and hope you find an immunotherapy trial that arrests her cancer.
    Stay the course.
    Tom
  11. Like
    Curt got a reaction from TJM in Carona   
    I was in the same boat Tom.  I never liked taking medicine and never got the flu shot.  I viewed colds as something you should just fight off.  I’ve come to appreciate that I’ve “challenged” my body enough this last year and take the help where I can get it now.  
  12. Like
    Curt reacted to LouT in Sucess   
    Wow Tom. You may be setting records on being discharged.  The pains will last for a while but are controllable with the meds you’ll get.  I still have some burning in my incisions and I’m8 months part my surgery but it’s not so bad.  Keep moving, using the spirometer, stay elevated in breed and rest do you keep on healing well.  By two weeks I was feeling pretty good considering the surgery.  
    Lou
  13. Like
    Curt reacted to TJM in Update   
    Well. As a number of you said, while not the most comfortable procedure in the world, a VAT is really not as bad as I had feared.  I have been fortunate to not have any complications yet, it is tolerable..at least for a relatively young guy like me (58 young...LOL). By far the worst of it all was the waiting and the fear of the diagnosis. 
    Drain is out, lung capacity is good, no difficulty walking around and no discernable breathing issues. Only issue I got is my bladder not cooperating so had to have two catheter experiences. Reloading now. If I can empty my bladder I will get discharged today.
    I stand by the strategy that if in doubt take the little sucker out. My next major decision will be adjunctive Chemo. From a stress standpoint that is a peice of cake.
    Thanks to all for your support and all of the excellent experiences you guys and gals shared with me.
    Still sore, right side feels real funny and from what many of you tell me, probably always will. But I am in a much better place than two weeks ago.
    Peace
    Tom.
     
  14. Like
    Curt got a reaction from Tom Galli in Tomorrow's the day.   
    Good luck @G.A.M.   This will be a walk in the park compared to your other surgery.   I had just my gallbladder removed and found it more painful than the lobectomy.  Abdominal surgeries are hard to recover from.  
  15. Like
    Curt got a reaction from G.A.M. in Tomorrow's the day.   
    Good luck @G.A.M.   This will be a walk in the park compared to your other surgery.   I had just my gallbladder removed and found it more painful than the lobectomy.  Abdominal surgeries are hard to recover from.  
  16. Like
    Curt got a reaction from TJM in VATS Surgery After non malignant biopsy   
    I had an 8mm nodule discovered by accident and watched it for a year with no change and no PET activity.  I have a family history of lung cancer and it was a spiculated nodule.  After a year of no changes the doctor recommended having a lobectomy.  I was floored.  I was feeling really good about the no changes.   When I received the first recommendation for surgery the doctor used the term lobectomy.  I couldn’t understand why they would recommend a full lobectomy without knowing it was cancer.  I went for a second opinion and the doctor said that he would do a wedge resection to see if it was cancerous, if it was he would continue with the full lobectomy at that time.  I followed up with the first doctor and was told that was what they were recommending, they just didn’t describe it well.  I decided to go with the second doctor. The nodule turned out to be cancerous and I had the full lobectomy about six months ago.
    Watching it for changes is a perfectly reasonable approach in my opinion.  I was a bit more aggressive because of a significant family history and the fact that I was told it would be a very minor or no quality of life difference for me to have surgery.    
    Most nodules are not cancerous but things like family history, spiculated, ground glass, female, former smoker and multiple nodules increases the concern.   
    Recovery from a lobectomy is different for everyone.  It is not fun but many are able to make full recoveries with little to no quality of life differences.  I have in six months.  How far you can recover depends on your age, physical health and pre/post surgery routines.  
    I hope you are one of the majority of people who have nodules on your lungs that are nothing.  Know that if you are of the unlucky minority of us that it is cancer that there are treatment options and this community is here to help get you through it. 
  17. Like
    Curt got a reaction from TJM in Curious of your opinion   
    I was given the option to wait and watch an 8 mm nodule or to take it out.  I have  a significant family history of lung cancer so the decision was easier for me.  I went into the surgery not knowing.  Best case is it was benign and they would only remove a small portion.  Worst case it was malignant and they remove the whole lobe.  I ended up being the latter.  Thankfully I’ve required no follow up treatment afterwards.  
  18. Like
    Curt reacted to Tom Galli in where we are now..long and overdue   
    Moonbeam,
    You joined us in December 2018 and your first post gave us lots of information about your husband's tumor.  I've gone back and re-read all of your posts to understand the nature of the battle you and your husband waged. Of course, it was an unfair engagement; his lung cancer was serious and dangerous from the start!
    I am sad to learn of his passing but take some solace that he no longer suffers from the intense pain he felt in late stages of his disease. I am proud of your husband's fortitude, and your devotion, love and attention you offered as you cared for him. You are most welcome to stay with us and offer hope to those that suffer from this insidious disease.
    Stay the course.
    Tom
     
  19. Like
    Curt got a reaction from BridgetO in Leave it be & monitor or biopsy   
    Is that 8 cm or 8 mm?  8 cm is a large nodule, 8 mm is just on the cusp of whether or not a biopsy is even possible.   Have you had a PET scan yet?    
     
    A biopsy has some potential down sides but it won’t activate a nodule into something else.   
     
    Here is a good resource on nodules.  https://www.thoracic.org/patients/patient-resources/resources/lung-nodules-online.pdf
  20. Like
    Curt got a reaction from ColleenRae in Stable!   
    I’m so happy to hear you are stable Michelle.  I’ve gained about ten pounds since surgery last February.  I believe that has as much to do with the emotional side as the the physical.   I’m embarrassed to say that the surgery hasn’t motivated me to lose the weight as much as an upcoming trip to Hawaii has. The trip is pretty close to my one year anniversary.  That anniversary is also motivating me to focus back on my overall health and well being.  It’s a constant battle.  
     
    Have fun in your trip.
  21. Like
    Curt got a reaction from Tom Galli in Carona   
    I was in the same boat Tom.  I never liked taking medicine and never got the flu shot.  I viewed colds as something you should just fight off.  I’ve come to appreciate that I’ve “challenged” my body enough this last year and take the help where I can get it now.  
  22. Like
    Curt reacted to BridgetO in Less than 48 hours till my life changes   
    You'll be fine! You'll be surprised how fine you are in a couple of weeks, maybe in a couple of days. I had a surgery for a previous non-lung cancer that was a fairly long and extensive surgery. After that one I groggily came to in recovery, not making a whole lot of sense, and I don't think I made much sense for a several days since I was full of morphine. My wife expected me to be like that after the lung cancer surgery, and she was really surprised that I woke up chipper and making sense, or at least as much sense as I usually make. I was walking around the hospital ward the same day. A couple of days later I was walking around my neighborhood with my chest tube and drain bag covered by  a big raincoat. Like Curt, I can still do what I did before surgery. Dr Tse told me I probably wouldn't notice any difference unless I was planning to run a marathon and he was right. I wasn't running any marathons before surgery either. Walking a 5K is about my limit and i can still do that and I'm 74. 
  23. Like
    Curt reacted to Tom Galli in Less than 48 hours till my life changes   
    Tom,
    Go through your wallet and remove everything but your DR license and medical ID cards. 
    Wear loafer style shoes. Moccasins are ideal. Slip-on beats bend down and tie every time.
    Wear clothes that are easy to get into. You’ll have sutures and movement to put on clothes should be minimum. I wore athletic pants and a zipper hoodie. 
    Consider sitting in the back seat on the way home. Someone will need to buckle your seat belt and in most cars, the backseat belt is more accessible than the front. Choose your seat so the upper belt does not cross your shoulder near your incisions. 
    Stay the course. 
    Tom
  24. Sad
    Curt reacted to Moonbeam in where we are now..long and overdue   
    I never thought I would be writing this post to you all...my husband passed away on his birthday, Jan 24. To say I’m devastated and shocked is an understatement. My heart breaks. Even more “surreal” is he passed the exact same time he was born!!! 🤦🏼‍♀️ Not sure what that means but we all (me, our children and his mom and sister are speechless) 
    Through tears and reflection,  I’ve learned more about this man I loved completely - a simple (is it that simple)blood test showed (arterial blood gas) that his pain and the anxiety he dealt with, was due partly to the lack of oxygen and CO2 that was or is responsible for his lung to function. Him to function. On Thursday evening when I brought him to the ER, he had, after several tests and scans,  they said he had aspirated and had pneumonia. I won’t go into details but I’m beyond devastated and I miss him so much. Wasn’t the deal we had.  
    I am forever grateful for this group and want to continue to be a force in everyone’s battle with lung cancer. I’m envious of those that continue to battle this insidious disease and I will always be your number one cheerleader. I’m soooo proud of my husband and the strength and courage he showed all the way to the end! 
     
    I love him sooooo and will miss him and us every single day! 
    xx
    Moonbeam
  25. Like
    Curt got a reaction from BridgetO in Less than 48 hours till my life changes   
    Tom I felt much the same.  The anxiety set in on my way to the hospital and escalated.  They cave me the choice to walk to the operating room or be wheeled in.  I opted to walk.  It was a long, scary walk.  I was really afraid that my life would be completely different after surgery.  The surgery hasn’t  prevented me from doing anything I did before surgery.  It won’t be as bad as bad as you may be imagining.  Hang in there. You’ll do great.  
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