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Curt

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  1. Like
    Curt got a reaction from mam12198 in Introducing Grahame Jelley- NACLC Adenocarcinoma Stage 3B   
    I had an upper right lobe lobectomy last February.   I’ve been NED since.   
  2. Like
    Curt reacted to mam12198 in Hi I’m Bev, recently diagnosed NSCLC   
    I’m inoperable which is frustrating. I wish you all the best and I pray we win this battle!!!
  3. 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.    
  4. Like
    Curt reacted to Helpingmom in Keytruda   
    It's been a while since I posted an update. Shortly after my last post, my mother suffered a stroke. She knew something was up a little before and insisted they check her for a blood clot, which she has had before. Well, they only checked her lungs and basically told her she was crazy because the blood thinners would keep that from happening again. The clot had traveled to her brain by then causing the stroke shortly after. Miraculously, she made it through that and after 2 surgeries to clear and widen the area so it doesn't happen again, she is almost 100% back to normal. She is still, since last year(February,  I think) on a treatment break. I was so upset that they weren't doing anything for the cancer except a scan every few months and was really encouraging her to get a second opinion. However,  even after all that time without the keytruda she is improving! She had a scan right before new year that showed slight improvement in her lungs and liver!! I am beyond thankful and I am just in shock that this has been working so well for her.
  5. Like
    Curt reacted to Cherilynn in Hello. I'm Cherilyn, wife of sclc survivor.   
    Thank you all for your wisdom and support.
    We  got the PET scan results today.  He's not in remission, but treatment very, very significantly shrunk the cancer.  It looks to be completely gone from his liver and bones.  His left lung is no longer impinged.  He will continue with Tecentriq (immunotherapy) 1x every 3 weeks.  Diane, he was also on the chemotherapy drugs Carboplatin and Etoposide.
    I am relieved that he responded to chemo so well. Now, we continue to live our lives, one day at a time, finding the best we can in every day.
  6. Like
    Curt reacted to TJM in Friends   
    Have a couple from Seattle coming down for the weekend today. Going to cook us dinner, hang, have fun and then watch the Superbowl tomorrow. Last night a bunch of local friends (closer to my wife) came over. I still hadn't showered and was in pain most of yesterday so I hid..but they got her silly drunk and I could hear them all laughing while hiding in my room. She needed it because she can barely hobble around and is feeling guilty that she isn't doing more for me. Blowing out her knee now was bad timing.
    So, took two pills this morning to kill any pain, took a shower and cleaned up the house a bit. Feeling much much better today. Shower was great and it was the first time I have really looked at my wounds. Wow. No wonder it hurts. Glad I got a VAT because if these wounds are from a minimally invasive surgery I can't imagine what an invasive surgery would look like.
    Bottom line. Friends should be held close and allowed to help. It helps them and it helps you. Also motivates (me at least) to get up and move around with purpose.
    I am probably not my Doctors favorite patient. But I do not really care that much because I'm the one who has to heal up and the sooner the better. Bottom line is  results, which I got...they moved my post OP visit to Monday so I can get this catheter out and refilled my pain meds. After Monday I hope to be done with the surgeon and just deal with my pulmonary doc. She is awesome and I feel like she cares more. Guessing surgeons are more into the action than the patient?
    Hoping for a good game tomorrow. My money is on the 49ers but I wouldn't mind seeing Reid and KC get the win. Mahomes is the real deal.
    Peace
    Tom
  7. 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.    
  8. 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.   
     
     
  9. Like
    Curt got a reaction from Tom Galli 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.    
  10. 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.
  11. 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.  
  12. 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
  13. 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
  14. 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.  
  15. 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
  16. 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
  17. 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.  
  18. 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
  19. 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.
     
  20. 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.  
  21. 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.  
  22. 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. 
  23. 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.  
  24. 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
     
  25. 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
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