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LouT

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Everything posted by LouT

  1. 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
  2. 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
  3. 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
  4. Cara, I'm sorry to hear about your husband's situation. In reading the test reports you cite I do keep seeing "No Malignancy" mentioned. I would say that you need to sit with the Oncologist and review all the test results. Some of the PET SUV ratings are above normal, but biopsy is always the "gold standard" for conclusion of malignancy or not. Once you review with the Oncologist he will no doubt make a recommendation. It may well be to keep an eye on the nodules for any further changes or even a progression into malignancy. But regardless, I would recommend that if you are uncomfortable with any conclusion or recommendation (treat or no-treat) then you need to get a second opinion. I believe that, at the least, there would be a recommendation to continue to follow up on the nodules. You didn't mention if your husband was exhibiting any symptoms as a result of the nodules. If so, it can affect the recommendation you receive. Please keep us updated on your progress. Lou
  5. LouT

    So quiet

    Karen, All digits crossed that your scan results are good. You're smart to focus on the trip rather than the scans (hard as that is). Please keep us updated once you have the results. Lou
  6. LouT

    So quiet

    It sometimes gets very quiet and other times not so much. But I'm so glad the outlet is here for anybody needing to connect with others going through this journey. I'm also thankful for the folks, like yourselves, that welcome and support those who do need to come here. I hope the Christmas and Hanukkah holidays are filled with good things for you. Lou
  7. jtrausch Thanks for the update and glad to hear that you are doing better. Even without the spot they would do the scan after three months. You'll likely be getting scans on a 3 or 6 month schedule for the first two years, then annually after that. You can discuss the schedule with your oncologist or lead doctor. In the meantime enjoy your results and know that we celebrate with you. Lou
  8. LouT

    Lung Nodule

    Arisa, Thank you for the update and it is good news. Your mom's doctor's seemed to have taken the correct and careful approach. My hope is for good scans going forward as well. Lou
  9. LouT

    Recurrence

    Hi SamGirl, Sorry to hear about your recurrence. LC is one of the most recurrent forms of cancer so we do live with that aspect of the disease. I had my lobectomy (LRL) in May of 2019 and through this past August I have been NED. Despite this I know that there is always a possibility for recurrence (even at my Stage 1 there is a recurrence rate of 30-35%). But like you, I just try my best to live my life and not focus on the cancer. Otherwise I'd lose all the joy of living and that would be a tragedy. Regarding the lymph node... I'm assuming that you have a recurrence in the lung and something is showing up in the lymph node as well. Was that discovered with a CT or PET Scan? Either way, in answer to your question "Yes, I have seen many of our survivors here who've had recurrence and different types of involvement and have come through treatment NED.)" There is quite a bit of hope offered considering the large number of survivors on this site and forum, and I hope that you'll take a bit of time to read a blog titled, "10 Steps to Surviving Lung Cancer; From a Survivor". It can offer some important information on surviving this disease. Please keep us updated as you continue your journey. Lou
  10. Sam, Sorry you need to be here, but glad you found us. Welcome to our forums. I was diagnosed with LC in early 2019. I had a lobectomy in May 2019 and from then until last August I've been NED (No Evidence of Disease). My treatment was surgical only, but many here have had varied treatments depending on their diagnosis and condition, so there is a lot of experience for us to share with you as you go through this. Please ask any questions that come up and also read some of the forums they are filled with important knowledge. I'm sure that there is much going through your mind right now, but I want to share some information that I feel can be helpful to you at this time. This is an important blog by one of our long-time survivors who was diagnosed at Stage 3 then Stage 4 and 19 years later was declared "cured". It's titled "10 Steps to Surviving Lung Cancer; from a Survivor". In addition to Tom's survival story Lungevity has a section titled "Lung Cancer 101" which has a plethora of information from why lung cancer happens to diagnosis, treatment, and other important information. If you do go through a surgical lobectomy (the treatment I had) please read "Thoracic Surgery Tips and Tricks". It can help you prepare for the surgery, get you through the hospital stay, and also has post-surgery information covered. I look forward to hearing more from you. Lou
  11. Hi Jim, Welcome to our forums. Glad you found us but sorry you need to be here. There is a wide spectrum of survivors here NSC, SC, gene driven, etc. I'm sure you'll be hearing from some of these folks soon. I would still like to share some information that may help you along your (and your wife's) journey. This is an important blog by one of our long-time survivors who was diagnosed at Stage 3 then Stage 4 and 19 years later was declared "cured". It's titled "10 Steps to Surviving Lung Cancer; from a Survivor". In addition to Tom's story Lungevity has a section titled "Lung Cancer 101" which has a plethora of information from why lung cancer happens to diagnosis, treatment, and other important information. Finally...having spent over 3 years as a caregiver I have some knowledge of how tough it can be. We have a section called "Caregiver Resource Center" you can post there and peruse to understand how others before you coped with this difficult disease. I look forward to hearing more from you and hope you find the support you are looking for here. Lou
  12. Jim, I think Tom nailed the answer for you. Please let us know how this works our for you. Lou
  13. Jim, Welcome to our forums and thanks for all the detail, I read the whole thing. I also want to thank you for your service and tell you that my best friend fell victim to Agent Orange with mortal consequence, so that is a very real thing. Okay, now on to your topics. Your sister is one smart cookie. MD Anderson is a great place for you to be getting treatment. I can't comment on your specific treatment as my treatment was surgical. But our family here has many survivors with just about any experience you can name and I know you'll be hearing more from them soon. When the time comes for you to get your surgery I have "Tips and Tricks" to share with you to help you prep for it, get through it, and recover well. But in the meantime I do want to share some other information. Some is general, but pretty important once you've been launched on this journey of Lung Cancer. 1. One of our members (also a Vietnam vet) was diagnosed with Stage 3 LC (lung cancer) then with Stage 4. He's still here 19 years later to share his wisdom and learning. Please take a look at his work "10 Steps to Surviving Lung Cancer; From a Survivor". (just click on the link). 2. For some information more focused on your present treatment please take a look at our "Chemotherapy" forum, as well as our "Immunotherapy" section. 3. Finally you can take a look at our section for "Veterans". There aren't many posts there, but some of what is there may be of interest to you. Also, please stay away from Dr. Google as many of the predicted outcomes are based on 5-year averages, don't take into account individual factors (e.g., your workouts), and also don't account for the new treatments that are constantly being used today. I look forward to seeing you on the forums. Please feel free to ask questions and we'll do our best to answer from personal experience. Lou
  14. Sue, Welcome to Lungevity. I'm glad you found us. You'll find a very diverse group of survivors here. Collectively there is little that we haven't seen or experienced. I hope you'll find your time here worthwhile. You seem to have managed a very active lifestyle and (as many of our members will tell you) that is really a great thing. Keep it up. You've already racked up some pretty good experiences of your own but I would still like to share a couple of things with you. This was written by a fellow survivor who was originally diagnosed at Stage 3 then it moved to Stage 4. That was 19 years ago and he is still with us and active on this forum. It is titles "10 Steps to Surviving Lung Cancer; From a Survivor" and it can be found here. One of the best things we can do with this disease it to learn all we can and our section titled "Lung Cancer 101" located on this page. Since you are getting immunotherapy I thought you'd be interested in checking our our "Immunotherapy" section. There may be information there you could find valuable along your own journey. I look forward to learning more about you and your journey as you become part of our family. Lou
  15. Welcome to our forum. Sorry you need to be here, but glad you found us. You don't say what surgery you had; if it was a lobectomy, wedge resection, or other. Perhaps as you're here longer you'll be able to provide more details. Meanwhile, off the top of my head, there are a few things you can ask shortly after surgery: What was the size of the tumor and was there any involvement outside the lung (lymph nodes, etc.)? This will help you and your surgeon properly stage the tumor and also open any discussion on adjuvant chemo to make sure all cancer cells are gone. Were biomarkers identified from the biopsy of tissue taken? This information can help identify any mutations or biomarkers that may allow for a targeted therapy in the event of a recurrence. My understanding is the "mucinious adenocarinoma" cells normally originate in the colon but if the diagnosis was "Invasive mucinous adenocarcinoma (IMA)" that is a subtype of lung cancer cell that has its own characteristics.. Is this cancer form confirmed by the doctor and if so what does he/she believe the next steps will be post-surgery. Please take some time to look at our "Lung Cancer 101" section there is a wealth of information there. I hope that this helps you out and please feel free to ask any additional questions you may have. Lou
  16. Welcome to our forums. Wow, you really did have a long, hot summer, didn't you. Assuming your lymph nodes come back clean it is unlikely that any adjuvant treatment would be given. I too had a LR Lobectomy in May 2019 and all scans since that time have been NED (No Evidence of Disease). I pray you have the same results. I'm also so sorry about your wife's accident. What a terrible fall it must have been. Hopefully her healing will be swift (as can be) and complete. Lou
  17. LouT

    Lung Nodule

    Arisa, You'll really need to see what steps the doctor believes you should take now. It is possible for benign nodules to grow and even shrink over time. The following is from an article by the Cleveland Clinic, regarding benign nodules that can be found here: Compared to malignant tumors, benign lung tumors: Aren’t cancerous, so won’t spread to other parts of the body. Grow slowly, or might even stop growing or shrink. Aren’t usually life-threatening. Usually do not need to be removed. Can expand and push against nearby tissues but will not invade, destroy, or replace other tissues. If the doctors are concerned they will perform additional tests (i.e., PET Scan, biopsy, etc). The biopsy can be done in a number of ways, but is considered the definitive test as to whether a growth is cancerous or not. At that point a decision can be made as to any next steps. At this point please stay focused on the fact that most nodules are not cancerous. If you find out it is then there are effective treatments as lung cancer it not the automatic death sentence it once was. Please keep us updated on your conversation with the doctor. Lou
  18. Hi Mary Ann, Sorry you need to be here, but glad you found us. I was diagnosed with NSCL in March of 2019 at Stage 1a. In May of that year I had a lower-right lobectomy and no adjuvant treatment. Since that time I have had numerous scans and recently (August) I had my 4-year scans and continue to be NED (No Evidence of Disease). I live my life fully, continue to work out six days a week and am grateful for each and every day I've lived. I'm aware that this is a disease of high recurrence, but will continue to live as long as I'm able to. One thing that helped me so much on this journey is the wonderful people I met since coming to Lungevity. They are a great group of folks who share their "knowledge gained by experience" and are the best support I've known. I hope you'll stick around, share a bit more about yourself and ask any questions that you may have. There is much I can share with you but I'll wait until I understand better what you may need before I do. Lou
  19. LouT

    LisaSH

    Lisa, Thanks for the additional information. You are doing the right thing in advocating for yourself. We need to be active in our treatment plans. You mention the difficulty in waiting during the diagnostic process. If you read other posts you'll see that you have lots of company on that point (including me). The anxiety is perfectly normal, but seems to reduce once we get a treatment plan. One thing I've heard people find useful when taking chemo/radiation treatments is to have a "palliative" specialist added to their medical team. This person can work with the patient and doctor to help reduce and address side-effects sometimes before they occur. They have a lot of knowledge of additions to treatment that ease or eliminate them. Please speak to your lead doctor about this and get their opinion. For my part I've heard enough to know that if I do go through chemo I'd look for that support. And yes, Dr. Google is contradictory and depressing. I'd rather hear from my Oncologist than any webpage. Lou
  20. LouT

    LisaSH

    Hi Lisa, Welcome to the club nobody wants to be a member of. My treatment for LC was surgical so I cannot answer your specific questions, but I'm sure others will be along shortly to help with those for you. In the meantime I'd like to share a few things with you that are pretty universal. Please take some time to read "10 Steps to Surviving Lung Cancer; from a Survivor". It was written by someone who was diagnosed at Stage 3 then progressed to Stage 4. This person had many recurrences and treatment and after 18 years was declared "Cured". You will likely hear from him as well. In the meantime these steps are very helpful as you begin this difficult journey. There is a section called "Lung Cancer 101". It has a lot of information on every step of the journey including diagnosis, treatment, follow up, and much more. Finally, stay away from Dr. Google. The survival stats they have are based on 5-year averages and don't show the full impact of newer treatments nor does it take into account the individual situation that goes along with every person afflicted. You're not alone anymore so please hang in there and know that we will be here. BTW, I've only been to Asheville twice, but I really enjoyed it. Lou
  21. Hi Karen, Sorry you need to be here, but glad you found us. After reading your post I did some research on ACC (as I'm sure you have) and it seems to be unique in many ways. I'll be looking to see which members respond with their experience of this illness and in the meantime I'd like to share a few bits of information with you. From my readings on ACC, surgery and radiation are the treatments used. Please take a look at "Treatment Options for Lung Cancer" it covers the treatments most used for this form of cancer as well as including information on mutations. We have a section specific to "EGFR" so you can hear from folks deal with that mutation and it can be found here. I'll be watching to see if others have faced this rare type of cancer and hope that you'll keep us updated on your journey. This is a wonderful group of survivors and you'll find great support here. Lou
  22. Mike Sounds like good news to me also. Please keep us updated as you continue to recuperate. Lou
  23. Hi Beth, Sorry you need to be here, but glad you found us. Sometimes the diagnostic process for this disease alone can make one crazy. It needs to be exacting, definitive, and accurate. I can tell you know that while CT and PET Scans have a place in diagnosis the definitive diagnosis is made via a biopsy. So shadows, nodules, and other abnormalities could be indicative of cancer the biopsy is the only definitive tool to determine malignancy, and other factors (i.e., genetic markers). Please take a look at "Navigating Your Diagnosis" and you'll see the difference between screening, markers, and definitive diagnosis. You need to get to the biopsy stage for a true diagnosis. Along with that you also want to know what genetic markers may be impacting the findings. Once you have that data settled you will begin to look at what treatments are available to help your Grandmother. So while it may be possible or even probable that it is cancer we don't pull the trigger on anything until it's been diagnosed. I'm not fully familiar with the UK health system but others here are and I'm sure that you'll hear from them soon. In the meantime please keep us updated and ask any other questions you may have. Lou
  24. LouT

    Newby

    Welcome to our forums Mscott and sorry you need to be here. I know you'll be hearing from others who have had similar experience and treatments soon, but I wanted to say "hi" and share some information with you. In my case my treatment was surgical without adjuvant chemo so I can't speak to the treatment from experience but here is some info that may help you on your journey: Learning and understanding this disease, diagnosis and treatments is an important element of survival. You can find our "Lung Cancer 101" here. Please read "10 Steps to Surviving Lung Cancer; From a Survivor" it was written by a member first diagnosed at Stage 3 then Stage 4 Lung Cancer over 18 years ago. We also have a forum for "US Veterans" where you can discuss issues specific to vets like yourself (and before I go on, Thank You for your service). There is a forum that covers "Chemotherapy" and that may also help you in better understanding those treatments. Please stick around, there is a lot of experience, knowledge, and support here. Lou
  25. Julie, Please keep us updated your progress with the Tagrisso. Meanwhile you'll be in my thoughts and prayers. Lou
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