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LouT

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Everything posted by LouT

  1. Anthony, Sorry to hear about your cancer, but glad you found us. There are many others here like eDiveBuddy, who were diagnosed with advanced LC (lung cancer) and years later they are still here to share their story. The truth is LC is not the automatic death sentence it once was. Yes it is still the deadliest form of cancer and highly recurrent, but more work (curative, and control-based). My LC was caught at Stage 1 and was treated surgically. But there are folks here with many and varied diagnosis and journeys. In the meantime I’d ike to share a blog with you that was written by one of our own members. It is based on his receiving a diagnosis of Stage 3 over 20 years ago. That Stage 3 then became Stage 4 and he went through many treatments and recurrences and only a couple of years ago he was pronounced cured. He compiled a list of “10 Steps to Surviving Lung Cancer; by a Survivor” and it can be found here. In addition, now is the time to learn as much as you can about your disease, diagnosis, and treatment. We have a section called “Lung Cancer 101” and that is found on this page. So please keep coming back. Ask questions, read other’s posts and learn all you can so you can manage this journey in a much better way. I pray you’ll be on the site for a long time to come. Lou
  2. Beautifully done Tom. Another blog I'll be offering to newbies to the LUNGevity site. Thanks for the contribution. Lou
  3. Letsdothisletsroll, I haven't taken any form of chemotherapy, but I did find the following on the Imfinzi website in the list of side effects: "Hormone gland problems: headaches that will not go away or unusual headaches; eye sensitivity to light; eye problems; rapid heartbeat; increased sweating; extreme tiredness; weight gain or weight loss; feeling more hungry or thirsty than usual; urinating more often than usual; hair loss; feeling cold; constipation; your voice gets deeper; dizziness or fainting; and changes in mood or behavior, such as decreased sex drive, irritability, or forgetfulness" I hope this helps. Lou
  4. Hello Dina. Sorry you need to be here but glad you found us. In 2019 I had a resection that turned into a lower-right lobectomy. The surgery went better than I expected and here I am (almost 5 years later) and still NED (No Evidence of Disease). A while back I put together some "Thoracic Surgery Tips and Tricks" and it can be found here. It can help you prepare for your surgery, get you through the hospital stay and also provides information for the post-op period. I can understand how frightened you must be but know that many others (including me) have gone through it and almost universally you'll here us say that it was easier than we thought. I'm not saying it is fun or that rehab is easy, but it wasn't the tragic experience I once expected it to be. Please continue to come here and read, post any questions or updates and let us help support you through this part of your journey. Edivebuddy said it well, that LC is no longer the certain death sentence that it once was. Lou
  5. Welcome Dee, We're glad you found us. This is a great place for support, knowledge, and hope. Let us know if you have any questions, there is a large and varied group of survivors here to tap into. Lou
  6. Glad to hear that you have a strong support system. Lou
  7. Cara, Since you are the “reader type” here is some information on treatment options. It is broad, but you’ll see good information about surgery there. The “Surgery” section under “Treatment Options” can be found here. One line from the criteria for a surgical approach found on the page is the following; "When surgery is an option in a patient with non-small cell lung cancer (NSCLC), it is the main treatment because it provides the best chance for a cure." Whatever the outcome I pray for you both to get a curative result. Lou
  8. If you mean me, I don’t get my scans until August. But I’m hopeful for another good set of scans. Lou
  9. C2Morrow, What a great user-name. Congratulations on your progress and I look forward to hearing more from you and seeing the future updates. This year's scans will mark my 5th year and if all goes well I can join your 5-year club. Lou
  10. Cara, The counsel your getting here is sound. I was diagnosed with Stage 1 early on in 2019, had a lower-right lobectomy, no adjuvant treatment and since that time all scans have been negative for malignancy. So, I’m in the boat of “get the surgery”, but I also believe that each patient can and should decide on the treatment that based on their own wants/needs. Unless there are other mitigating conditions or reasons surgery (particularly lobectomy) would be the “gold standard” treatment. Again, having said all the above the patient’s wishes rule, just make sure that his doctor is giving him all the information on outcomes to make that decision. I pray for good results regardless of approach. Lou
  11. I understand your frustration. While it is really about 3 pages to get there it could be made more clear on the homepage, perhaps even a direct link on the initial site. Thanks for the feedback. Lou
  12. Hi and welcome. Sorry you had trouble finding us but glad you did. Your short history shows remission since 3/21 and that is good news. Would you like to share a bit more about yourself and let us know how we can help you? Lou
  13. Thank you for your update. We have all fingers crossed that the outcome is a good one but whatever happens we’ll be here for whatever support we can give (which is a lot). Lou
  14. Hi Iman, I’m sorry to hear about your uncle. Biopsy is the gold standard for determining if cells are malignant. Staging is a different story. That is a determination made on the basis of tumor size, whether it has metastasized of not, any other involvement caused by the disease. You can read more about staging in our Lung Cancer 101 section and the “Staging” article can be found here. Stick around, read other posts to learn what survivors here have to share and read/learn all you can about this disease. Please share any updates as your uncle goes through his diagnostic testing. Lou
  15. It may not be so uncommon that separate scans produce some differing images. It’s good to hear that the nodules are not growing or presently considered malignant. Having said that there may be other tests they can run. For example, a PET Scan could show up malignancy in cells within the nodules or not show anything (good news). But at the end of the day a biopsy is considered the gold standard for determining the malignancy or non-malignancy of a growth. Sixty percent of nodules are benign but as a former cancer patient (like me; colon 2010, lung 2019) I would always error on the side of more data and confirmed testing. Lou
  16. Lauren, Hi. I’m glad you found us but sorry you need to be here. Your dad is beginning a journey that can have a lot of twists and turns depending on many details. I can’t give you particular detail regarding his condition, but I can tell you that I was diagnosed with lung cancer 4 years ago and am still here surviving and living my life. So a LC diagnosis is no longer the definite death sentence that it once was and there is more hope than ever before. This is a time for you (and your dad) to begin to learn about this disease. This way you’ll be able to navigate these waters more successfully. This is an article titled “10 Steps to Surviving Lung Cancer; From a Survivor” and it can be found here. Both you and your dad need to read this. It was written by a member who was first diagnosed at Stage 3 and then later Stage 4 and 18 years later was considered cured. It’s not everybody’s story but there are many here (like me) who have survived for years, and there is great knowledge for any LC patient, and family. Time to begin learning about this disease; causes, diagnosis, treatments, etc. Take a look at “Lung Cancer 101“. Last (for now) is a forum you may find interesting it is our “Caregivers Resource Center“. I can understand that at this point you are less interested in reading than in “getting something done” to help your father, but knowledge is power in battling this complex disease. You can also look through some of the forums to read what other survivors have written to get a better idea of what your dad might go through now and in the future. I hope this helps you. Lou
  17. I think if you look at your profile there is a record there of previous posts. At least I can see mine, but that may be because I’m also a Moderator. Lou
  18. It’s not unusual to have tests that aren’t always definitive. During my diagnosis phase for LC I had already had a CT Scan which showed a nodule. But a PET Scan was slightly high but inconclusive and then they wanted to perform a CT-guided tissue biopsy (through my back into the lung) but after trying once or twice the doctor decided that because the nodule was so small and tucked into lung tissue he didn’t want to run the potential risk of a collapsed lung and not get a good tissue sample. So, I was back at ground zero and had to wait another 3 months. Even after that a biopsy wasn’t possible so they did a resection wedge and biopsied on the spot, resulting in my lobectomy. If you believe that the doctor may have been the reason for the biopsy result then Please get another doctor. Biopsies are not always a clearcut procedure, some tissue can be in difficult places or be so small that it is hard to target the right cells. But since the board is recommending a second biopsy I would do it. I can’t answer regarding Medicare, but you can make a call and confirm coverage so you’ll have peace of mind. I wish you all luck and look forward to further updates. Lou
  19. LouT

    Metastasis to skin

    I know what it’s like to have to wait for tests when some symptom or finding has you so concerned. But hand in there Tom…you’ll get through this. A spot does not mean metastasis or even a new cancer. Please do your best to take this one step at a time. Remember that even a scan only shows if there is something there. The real “gold standard” test would be a biopsy, if that is necessary. Like you I’m 4-years NED and always have it in the back of my mind that this could end, but all we can do is to keep on living the life we fought so hard to hold onto. And normally after 4 years my oncologist says that he is less worried about recurrence or mets than he is about a new cancer forming, so please stay as focused on happier things as much as possible and until you have a definit reason to do otherwise.Stay strong Tom, you’ve already been through worse than this and you have our prayers for a good outcome to your scan. Lou
  20. Fire up that fireplace and keep the cocoa hot...some warm cookies wouldn't be a bad edition either. Stay warm buddy. Lou
  21. Cara, Tom is the "Survivor" who wrote the blog "10 Steps to Surviving Lung Cancer, From a Survivor". When you review his history you can see why I recommend it to all newcomers to our forum. His original diagnosis was 20 years ago, his treatments were so varied, he suffered numerous recurrences, and yet he is still here living life. Not everybody is a "Tom", but our forums are replete with many survivors, and I look forward to your husband joining that group. Lou
  22. Cara, I think it's time for me to share some information that can prove very helpful to: This is a blog that you need to share with your husband and read yourself. It's titled "10 Steps to Surviving Lung Cancer; From a Survivor". It was written by one of our members who was first diagnosed at Stage 3 then the cancer progressed to Stage 4. Over 18 years later he was declared "cured". The second is "Lung Cancer 101". It has sections that will lead you through all the stages of LC and will help to guide you through these times that are difficult, shocking, and confusing to all of us. The final one is our "Caregiver Resource Center", a place where family members and friend caregivers can share their experience with one another and find support. I know that right now somebody giving you "reading" doesn't seem like help but as we move through this journey we are forced to learn as much as possible to better understand the process, our options and opportunities for improving the treatment outcomes. My hope is that you'll both gain from the experience of those who have gone before you. Lou
  23. Sue, I'm glad that you're getting the help and support you need. I look forward to hearing that treatments are applied and the situation improves. Know that you are in our prayers. Lou
  24. Hi Sue, I don't know exactly what treatment you've been getting, but a hard reality of our disease is the high recurrence rate. I have a team that consisted of a pulmonologist (first found my cancer), surgeon (who performed my lobectomy), and an oncologist (who I look to for overall direction and treatment). Your oncologist can work with you to decide if any additional testing is needed and then the best treatment to pursue. He may present your case for a peer review or speak with others for additional input, but those are good things to have happen. I've seen/read from a number of folks on this forum who have had brain mets treated with radiation (e.g., gamma knife) with excellent outcome. In preparation for your meeting write down any question you may have about any aspect of the upcoming treatment, and bring along someone who can take some notes for you. I remember going to appointments where I was so upset that I Hardly remembered what the doctor had told me once I left. My prayer is for you to find another treatment that is effective. Please update us once you learn more about what will come next. Lou
  25. Maciek, I'm sorry to hear about your brother, but glad that you found us. Others will be able to provide more information on targeted therapies than I can as my lung cancer was treated surgically in 2019. It was stage I and my scans have been NED (No Evidence of Disease) since that time. I may not have experience with the treatments you describe but I'd like to provide some information you may want to share with your brother. First is a blog titles "10 Steps To Surviving Lung Cancer, By A Survivor". This was written by a member who was diagnosed at Stage III, then went to Stage IV and over 18 years later he was declared "Cured". That article can be found here. Next is a section of our website titled "Lung Cancer 101" and iti contains a wealth of information on causes, diagnosis, and treatments for Lung Cancer. You can find that section on this page. Finally, as someone who is going to be caring for your brother I thought you might benefit from looking at our "Caregiver Resource Center" which is found at this location.f In closing I can also tell you this...while Lung Cancer is the most deadly of cancers and shows high recurrence there are a number of survivors here who had Stage diagnosis similar to your brother who are still doing well years after diagnosis. I pray the same for your brother and hope that you'll continue to delve into our website and learn all you can to better support your brother. It would also be good for him to connect with some of the great survivors here so he can learn that his diagnosis is not the automatic death sentence it was years ago. Progress is being made at a steady pace and new treatments are available even since my diagnosis four years ago (soon to be five). Lou
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