Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by LouT

  1. A great story Stick and a wonderful outcome. You're correct that a group that can share from experience can help dispel some of the fears, depression and even symptoms that come from a journey with lung cancer. You are most welcome to join any of our forums and contribute as time allows. I wish for your continued health and clean scans going forward. Lou
  2. Carole, Welcome to our family. Kristen and Tom have already given you some good information and thoughts. We'll be here as you go through your journey and we have a lot of experience to share. For example, I also had Squamous cell carcinoma in my RLL, so I look forward to hearing more as you go through the diagnosis process. BTW, my diagnosis was 27 months ago and my surgery was 25 months and my scans are clear and I'm still NED (No Evidence of Disease), so there is hope. You're not alone. Stay in touch. Lou
  3. This seems to be such a rare form of cancer it's likely not prioritized for treatment. My prayers for you and your family. I hope they can make your dad as comfortable as possible. Lou
  4. Nav, Boy do I wish we could help you with this, but I can only refer you to the NIH materials I found earlier. This is such a rare lung cancer that they could only quote a few cases of it occurring. The strength of our group is being able to speak from experience so that our words and actions have validity. Unfortunately, in this case we have no experience. Your medical team has got to be able to provide you with some data to help you to center and focus on going forward. I wish you all the best and if you can continue to share here what your experiences are you will help the next person unlucky enough to come down with Glomus LC. Lou
  5. You'll surely hear from folks on this and soon. My treatment was purely surgical so I can't comment personally on it. Lou
  6. Hello Kiva,, Sorry to hear about your diagnosis and happy you found our forum. Can you tell us a bit more about your situation. Some particulars around the diagnosis and other info such as whether genetic testing was done, etc., can help those of us here to help you by sharing what we have learned from experience. Also feel free to ask any questions you may have. In the meantime you can read about more about "10 Steps to Surviving Lung Cancer; by a Survivor" here. Lou
  7. Hi Gina, You've already gotten some solid feedback, but I just wanted to welcome you to our forum and to reinforce what Tom said. Let us know what the final diagnosis and, if it is cancer, the proposed treatment plan. Also, let us know what questions you may have. As a group we have experienced most every situation you can think of so someone here will be able to share what they know from experience that may be helpful to you. Right now though, please try to keep yourself together. The diagnosis phase is a very difficult one for us all and I can tell you that if you are diagnosed with LC that you will feel better once your medical team puts together a treatment plan for you. Anyway, in the meantime as any question you may have here. Lou
  8. Lynn, I'm sorry to hear about what your Mom is going through. You've already gotten great feedback from Tom and there is little I can add to what he had to say, except this; I think every person can consider what is best for them in the throes of a cancer diagnosis. Your Mom is likely right that chemo and radiation could surely lessen her quality of life even more than her present conditions are doing. She is opting for feeling better than the side-effects until the end and I understand her decision. My Mom underwent chemo and radiation in her late 70's and it was brutal on her. Eventually it would result in numerous bouts of anemia and pneumonia, finally ending with a bout of pneumonia that she couldn't overcome. I felt bad for her the last year of her life. In her case, it was her choice to want to go through the treatment and I respect that, but can fully understand your Mom's decision to get comfort care and Hospice. I send all good thoughts and prayers to you, your Mom and family. Lou
  9. Another well-written piece. The vaccines are surely controversial for many. There are legitimate questions about giving them to young people, who are the least affected by Covid19 and now a serious question about whether the side effects in that group belie the rationale for young people to receive this vaccine. But, alas, like you I'm vaccinated and know mostly vaccinated folks so I'm frankly willing to allow others to make their own decisions. The one thing I've always questioned is why people who survived Covid19 with antibodies would be expected to receive the vaccine as well. The rationale around that didn't really make sense and now Cleveland Clinic has released a study that seems to support the fact that vaccination in that group is not really required and other studies seem to point to higher side-effects in folks who survived the disease. My son (who almost died from it, but survived) is such an example, his first vaccine gave such strong reactions that lasted days that his doctor recommended not getting a second. The same situation happened to my wife. So, unfortunately, I don't believe we'll really have all the lowdown on vaccines (except that overall they likely saved tens of thousands of lives) until results are studied over time. Science requires that. Lou
  10. KM, I wish I could answer your question. In my (recent) case I was told beforehand that because I had to lay on my stomach for my surgery (removal of a 20mm kidney stone through my back) that I would have additional irritation from the intubation. But, I didn't expect it to be this harsh. My voice is still like a young man going through puberty...a bit weak, then strong, cracks, etc. I've been trying honey to soothe it and cough drops to keep it moist and hope it improves soon. Although I'm retired, I'm also a musician who still writes, plays and records my own work and supports other musicians. So, you could see that getting my voice back isn't just about comfort. I'm just taking it really easy for now and hoping I won't wind up sounding like Joe Cocker when it finally heals. I know this didn't answer your question, but I can only tell you what I went through. Lou
  11. Wow...you've really been through the mill with the treatments, but I'm so glad to hear that the 3rd treatment went more smoothly. My hope is that the 4th one is much the same. It's also good to hear about tumor shrinkage and no new disease. I'm aware that others here have experience with different forms of chemo, but for my part I pray that your 4th treatment is an easy one and that the results continue in the right direction. Thanks so much for the update. Lou
  12. Anna, Sorry to hear of your dad's passing. It is always so hard to lose a family member, especially a parent. I was comforted to hear that he didn't suffer the high pain he was under previously and that he passed peacefully. That is a passing we all hope for. Thank you for updating your situation and sharing it with us. Lou
  13. Nav, My heart hurts for what you and your family are going through. I just hope and pray that you, your dad and family find some peace in all this sadness. Lou
  14. Amber, Most nodules (60%) are non-cancerous. Many are formed from infections, irritations, allergies and the like. So please don't run to a diagnosis that may be way off base. You are right to want to have the finding looked into a bit more and the doctors may compare old scans with this one...choose to monitor these for a period of time or perform other diagnostic tests (e.g., PET Scan). So you are still a ways off from a cancer diagnosis. Please make sure you ask the doctors about any questions you may have so you can feel confident in the work being done and better understand its results. Stay in touch here along the way and ask any specific questions that may come up as you go through the process. But, most of all, please slow down and let the process move forward. You very well may have nothing to be so concerned about and will only know once the doctors review everything. Lou
  15. LouT

    Iaso tea

    There is no present data proving detoxing is practical or valuable to health. And surely it is not a determinant in surviving cancer. You can see a short treatise on these points from the University of Texas, MD Anderson Center. You can find that article here. Lou
  16. I did something like this prior to my lobectomy. I improved my diet, increased my daily distance and weight workouts and frankly it got me into pretty good shape. I do believe it is one of the things that helped me to recover as quickly as I did. Lou
  17. Nav, I was reading up on Glomus and it looks like it has only been diagnosed 4 times previously...(according to NIH: National Library of Medicine). I have no real detail on this, but am interested in hearing what you uncover. It is so rare though that you may have somewhat of a challenge finding a place that specializes in it. Lou
  18. Ant, This disease can be overwhelming. One of our members wrote a great piece called "10 Steps to Surviving Lung Cancer; by a Survivor" and it can be found here. There is a lot of good information here that you can leverage to get through this stage (and others) as you go through this process. If it does turn out that your father's medical team recommends surgery, then we have a lot more information that can help you and your dad specifically. Stay focused, ask a lot of questions and make sure you understand the answers. As you get more information please come back and share it here so we can share like experiences with you. Lou
  19. Nav, Sorry to hear about your father's condition. This is such a tough time for him and the rest of the family. On to your question; there are many ways to address SOB from cancer, but it depends on what is going on at the time. For example, if there was a lung inflammation they might use a steroid to reduce the inflammation and restore more normal breathing. Other times it may be O2 or some other med, but at this point your father is just going through the diganostic process and they'll need to determine the exact cause for the shortness of breath and then they can decide on the best treatment. Hospice can help you with the O2 and such, so please rely on them right now. Once your dad's medical team has all the data they will set a protocol for his treatment and SOB will be big on that list. I wish you all luck and good results as you go down this road. Lou
  20. Judy, I'm so sorry for the loss of your father. He sounds like a man who did some wonderful things in his life. Your love for him is obvious and real. Your guilt is understandable (I felt very guilty/depressed, when I had to put my wife into memory care January '20), but not deserved. I really like Michelle's idea to get someone to speak to about this. You did the best you could, under the circumstances and all from a vantage of love and caring. Others did not do their job and you can be disappointed in them, even angry at them, but you are nowhere near responsible for what they did. I hope that you will get an outside voice to listen to that can help you sort this out. You deserve to feel like the loving and caring daughter that you showed yourself to be in all situations. Lou
  21. Bang, I could be wrong, but you may be letting your mind catastrophize symptoms that turn out not to be caused by cancer. You really need to try and reel in your imagination and do a few things. 1. Learn about Lung Cancer. You can do that by reading a blog called, "10 Steps to Surviving Lung Cancer; by a Survivor", you can find it here. 2. Ask questions of your doctors about the symptoms and the most likely cause for them. If you need to then write them down and have someone go with you to the appointments. They can help you stay focused and may catch things that you miss because of emotions. 3. Accept the fact that you need a diagnosis of cancer in order to have cancer. I realize that you have fears, but you need to adopt a different approach or you will put yourself through a lot of misery that may not even have a basis in fact (and diagnosis). I was a person who did to myself just what you appear to be doing to yourself and folks here helped me to focus on the facts and wait for results before I jump two steps ahead of the doctor. Please try this approach for yourself. I hope the nodule is like 60% of nodules and not cacncerous. Lou
  22. Okay...good news after all...let's get all the rest of the test results in and hopefully close a lid on this with a super outcome. Lou
  23. Nanny, Welcome to the forums (again). A negative test is always good news and just means that the search must continue to find out the reasons for all that is happening to you. I can understand that you are scared, but as long as you are posting here you will not be alone. You covered so much ground in your post and you're dealing with a number of ailments. They could be cancer-related or perhaps they are not. Either way you need to get these things addressed. The good news is no growth in your cancer the past 1.5 years; the not so good news, you seem to have a myriad of symptoms that are robbing your health, energy and joy for life. I cannot say that I've gone through what you have, but I would be interested in what might happen if you added Palliative Care personnel to your medical team. I have heard of my fellow survivors here who have done that with good results. You need to get all these symptoms sorted out and addressed individually so that you are in better shape to face the therapy you need to keep that cancer stopped dead in its tracks. Lou
  24. Looks like a couple of books I need to download. Thanks for the input folks. Lou
  25. Nav, Welcome to our forums. The "Cancer 101" Kristin sent you is a valuable piece of information. In the meantime it is normal for the doctors to want to gather all the information they can...CT Scans, PET Scans, bloodwork, biopsies and genetic testing; before they can make an accurate diagnosis. Please don't take it as them not caring, but rather them understanding the importance of getting all the data before they confirm the diagnosis as well as the extent and type of the cancer. This is normal at this time. Please keep us informed once you get the results and ask any questions you'd like here. Lou
  • Create New...