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Karen_L

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Everything posted by Karen_L

  1. Thanks for the clarification, @edivebuddy!
  2. @edivebuddy, I was initially staged at III, with spread to hilar and other lymph nodes, IOW, soft tissues. (Hence the staging.) Due to the location of the big-a$$ tumor, they could biopsy only the lymph nodes.
  3. I know people who have had recurrences and who continue to live lives of meaning almost 20 years after diagnosis. My oncologist does not use the term NED with lung cancer. The term even the doctors who read scans use is "stable." I'll take it. There are no guarantees, there is no way to know. I think coming to to peace with this is the hardest work of living with lung cancer. I have had gamma knife for a brain met, but not whole brain radiation.
  4. Karen_L

    Waiting in Limbo

    You don't have to wait to be contacted. I urge YOU call the oncology center (assuming that's where you were referred-- I was.) Tell them you've been referred by Dr. Pulmonology and ask for an appointment with a lung cancer specialist. Even better, go to the cancer center where Dr. Pulmonology has referred you, read about the oncologists there, and see who the lung doctor(s) are. If there isn't a lung doctor, it would be best to find one. Lungevity can help with that. If Dr. Pulmonology has referred you to a specific oncologist, call them directly. If they are a generalist, you can go ahead and meet with them, but lung cancer research is progressing so rapidly you really need someone who follows it. I'd also urge you to call your pulmonologist, or contact her/him thru MyChart, to be sure s/he has sent the tissue for biomarker testing. Lungevity has info about that at https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing It's so hard to wait. Try to breathe deeply and slowly. And please keep us posted. If you want, you may find you receive more responses if you post in the forums.
  5. @edivebuddy I think you raise a topic of real concern. I suggest you contact Lungevity directly and share this with them. You can call or email https://www.lungevity.org/about-us/contact-us
  6. Karen_L

    Metastasis to skin

    @TJM That was one helluvan ice storm. We fared well, as did our family members. Many others were not as lucky. I had a brain MRI the Thursday after everything started (I was able to change the test from Wednesday, when it was still sleeting but forecast to warm up.) Things were starting to be manageable Wednesday night, but on Thurs., we still got up way earlier than necessary, packed our micro-spikes, and immediately skidded to our butts on the icy sidewalk. My husband started spreading kitty litter like crazy on our (downhill) driveway. We figured if we could get onto a main thoroughfare, we're be reasonably OK. We got to the cancer center early! I wasn't sure the technologists would show up, but they were there. Hooray! (Except for the MRI part haha.) We parked on the street when we got home. That driveway was still bonkers.... I've not heard of LC metastasizing to the skin, but hey, who knows. I saw a dermatologist for my skin cancer because that's what my PCP said would be best. A little MOHS procedure and I was done. Lou's got great coping advice, as always. Please keep us posted. Karen
  7. @Kamoto I'm shaking my head over your multiple cancers. I hope you're managing all that may be going with it, i.e., emotions.
  8. @Cara.M, thanks for the updates. Has the doctor sent the tissue for biomarker testing???? This is essential for determining treatment routes. Different mutations respond to different treatments (and that's an understatement!) Here is information on why it is critical : https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing Please pursue this immediately.
  9. Welcome aboard, @allicat1214. Sorry you need to be here, but it's a great place to land. I'm glad to hear how confident you are about your ability to advocate for yourself. I'll join in on the chorus supporting a biopsy down the road. Tissue biopsy is considered the gold standard, although liquid (blood) biopsies are often a place docs start if they want a relatively faster result (days instead of weeks.) Totally agree with the value of the NCCN site. Good luck, and keep us posted.
  10. I so understand! I have been saying I'm not sure whether I'm tired or tired of. Pretty sure it's the latter. LOL. I pulled back from work when I was diagnosed and that was really, really hard for me. But I feel at peace with it now. And, I've started volunteering at a very special site where I can really make a difference, using my professional background. I'm grateful for my life. I wish the same for you. Karen
  11. Hey, Tom, It looks like an ice skating rink over here in PDX. Luckily we didn't lose power, but so many have been without it since Saturday. We're all in this together-- and won't it be great when we get back to our regular winter rain? K
  12. Hi Cara, I understand how more information feels worse than keeping the information simple. One set of data makes the situation feel more clear, i.e., “If X, then Y.” But in the world of lung cancer— or rule-out lung cancer— we balance the information we know today with keeping options open for the future…. We do the bast we can, in any given moment. Please know that you can make a decision based on all you know one particular day and weeks or months later they discover something new and BAM you’re already down another path, which they don’t like to change. If you can keep this in mind, you will feel less crazy anxious along the way. In short, more information may not feel helpful, but it’s ultimately a good thing. In terms of your situation, has there now been a definitive cancer diagnosis? This is one thing to be sure you’ve clarified before anything is decided about treatment. If it is, then biomarker testing must be done, preferably before a treatment path is decided on. I suggest that you read more about it so you can start to prepare your list of questions. Here’s a good start on biomarkers. Now is the time to learn as much as you can so you can formulate your questions. You might want to read about lung nodules, which ultimately can be something to watch (not act on). Make sure your reading is done on reputable sites— Lungevity, Go2, Cancer Research UK, National Cancer Institute — are examples of some. Be careful of sites where people insist there is a single best path or give you advice about the definitive thing. There are also folks out there who swear by this or that alternative treatment, special food, or supplement. These often have negative interactions with traditional therapies, so be sure to research before doing anything. That the doc wants to bring your husband’s case to the tumor board is excellent. They will hash it out until they arrive at consensus. I hope you will see this at an excellent thing, because it is. Yes, radiation can cause inflammation. So can other things. If surgery is an option, what would be the benefits over radiation? That’s an important question to ask. Would either treatment now preclude other treatments in the future? Which would be the easiest to tolerate; why? Surgery was not an option for me given the proximity of the cancer to my heart. Many people prefer radiation because the risks compared to major surgery can be less, depending on the patient. Others prefer surgery. You can’t easily make these decisions beforehand, before all the information has come in and been analyzed. But you can prepare questions and have some general ideas of your broad preferences. I have a link to a patient’s self-advocacy guide in my footer. I think it’s pretty helpful. You might find it to be as well. Meanwhile, if there’s nothing to be done until the tumor board meets, make a learning plan. When you're not learning, get cancer out of your mind and focus on something else. Keep us posted. Karen
  13. A second opinion with a doc who specializes in lung cancer is an excellent idea. I had a lime-sized tumor in my right lung, as well as some nodes, zapped. Radiation took a lot out of me, but killed everything, so that was worth it. It's hard to wade through the initial period of confusion, and it takes time to understand the options. But if you can see it as a step-by-step process, it can help cope with the uncertainty. K
  14. Sue, This is hard news. I'm so sorry you are dealing with it. Lung cancer does seem to like the brain. About a year after my initial diagnosis, a lesion was found on my brain. Because my fist line of treatment included radiation, I had a radiation oncologist on my team already, and the tumor board at my cancer center recommended gamma knife (similar to cyber knife) treatment. Despite the name, no knives are involved! It's a very precise, targeted form of radiation to the specific tumor sites. There are usually not big side effects-- I had none. (My brother-in-law did a 30 mile bike ride the day after his...which is more than I would attempt.) I was also started on Tagrisso, a therapy that targets EGFR-mutated cancer that's gone to the brain. It's a scary time but take it one step, one breath at a time. Please keep us posted. K
  15. Oooh, apple pie! I hear you about knives-- I ended up in urgent care 4 days ago to get my finger glued. (He wanted me to go to the ER, but he took pity on me....) I hope your holidays are peaceful and happy.
  16. Karen_L

    So quiet

    It has been quiet here. I check in daily, and hope the quiet spell is because everyone is busy living life. I have scans Friday and am more nervous than has been typical. On the other hand, we just made plans for a June trip of bicycling the Danube from Prague to Budapest, so I am choosing to think about that (when I can haha.) Otherwise, we've gone all out on holiday decorating and I'm baking up a storm. It's peaceful for now and for that I am grateful. K
  17. Kamoto, NED on your chest and abdomen-- WOW! What a wonderful result. I don't have experience with a sore that doesn't heal. It reminds me of old TV commercials about when to check with your doctor, which you're doing. May I, with a little gentle humor, remind you of your last foray into self-diagnosis? Not a fun time. I'm selfishly glad you told us about this-- I've had a weird thing on my arm that I really should get checked out. Ugh. Maybe I need to make an appointment with the dude who did the MOHS surgery on my nose (for some skin cancer.) So, thanks. I hate calling more doctors, really hate. But ya gotta do what you gotta do. So, thanks. And I'll be thinking of you. Please keep us posted. K
  18. Wonderful news! Hope your heart is lighter and the days full of light. K
  19. I love that you are focusing on living! And I need to offer some caveats as you continue your lung cancer experience, perhaps for other folks who might be reading your blog than for you. (You sound like you are working your way into understanding that can sustain you and I'm glad for that.) I want to say that your friend's comment enters into the zone we call toxic positivity. It's often what some folks offer people with cancer when they don't know what else to say to show love or support. You're lucky to have such a stalwart friend who has given you something to hang on to that you value. What I want to emphasize is that toxic positivity is also what many lung cancer folks use to beat themselves up (in the privacy of their own minds) if they have a recurrence of cancer after initial treatment. That goes something like this: "Oh, I must not have had enough hope/eaten enough kale/taken enough vitamins/fill in the blank." What I've observed is that you can have all the hope in the world and lung cancer can still recur or spread or kill you. Or, you can have no hope and live for decades. You can eat a totally vegan diet and do all the other stuff you read about and have cancer recur or spread, or you can eat sugar and processed meats and live for decades. Some of us find our way to hope swiftly. Others of us take a longer time to understand what hope means for us, or how different kinds of thinking can affect the quality of our days. Some folks don't relate to the discussion of hope at all, and that's OK too. As you say, each person's experience is so individual. I am so glad you are finding your way to equilibrium. Karen
  20. Those dark moments of the night once made me invest in a night light. (No kidding.) Glad you're going to have a conversation with your PCP. Just know that s/he probably doesn't have the specialized knowledge you need at this point. Lung cancer is exploding in terms of new research and treatments; you really want a lung cancer specialist to see all the tests you've had and talk about the next step(s). Perhaps your PCP could connect you to one? Here's hoping you have a wonderful visit with your daughter this Thanksgiving.
  21. Karen_L

    Recurrence

    "Stable" is such a lovely word. "Lymph node" is not always, depending on what is happening with it. No matter what happens, the hardest thing for me is to live in the moment, aware of exactly what is around me that second, and to NOT let myself get outside of those parameters. Researchers learn more and more about lung cancer each day. Unfortunately, they have not (yet) learned to predict the future of anyone's lung cancer. I would love to say, "Don't worry, it will be fine," because neither I nor anyone else can say that with certainty. What I can say with complete confidence is that you can learn to manage the scanxiety and fear. You can live a rich and beautiful today, and you can string days and days and days together-- I know someone who has lived with Stage 4 for more than 14 years. Please hang in; please keep us posted. K
  22. Hi Phyllis, and thank you for your great work in raising awareness. I have compound mutations also, one of which is an Exon 20 point mutation (S768i). I've encountered one other person with this mutation. Luckily my other is garden variety EGFR L858R, for which there are some targeted treatments. If you have an Exon 20 insertion, you've probably heard about this. Also, you may already be a part of Marcia Horn's Exon 20 Facebook group. She's amazing. (Because I have a point mutation, I don't qualify. 🤷‍♀️ ) But you might want to check it out if you haven't already. Best, Karen
  23. Jim, So sorry to hear your wife and you are going through this. Here's hoping someone here has some experiences to share. Just wanted to say Welcome. Karen
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