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  1. 4 points
    Charles

    Durvalumab

    #9 gone for me, Pet/ct scan results in= Shrinkage, SUV less. mediastinal node gone, with small plueral effusion, and small pericardial effusion, no new C ANYWHERE, Hoorah! Great scan!
  2. 3 points
    Charles

    Durvalumab

    Thanks Tom and Steph, Also answers questions whether prednisone stops the imfinzi from working, NO it doesn't, even the maximum dosage of prednisone (1mg per kg of body weight per day) and even when on 50 mcg of thyroid hormone replacement pills, and even low PDL-1 (10%) THANK YOU LORD!
  3. 2 points
    I know it’s happened to all of us at some point during our experience as caregivers: the “self-care” lecture. Eat a vegetable! Take a stroll! Get to the gym, even for fifteen minutes! Get a pedicure! And on, and on, and on… How do these conversations make you feel? I confess that they frustrated me immensely in the earliest days and weeks after my mom’s diagnosis. I was actively offended any time that someone had the audacity to suggest that anything was more important or more time-sensitive than navigating the maze of new information that we were tossed into. I just knew that anyone who could suggest I take time for frivolous activities was way out of touch with reality, and did not understand what I was up against. Worse: I had a feeling in my bones that they did not WANT to try and understand what I was up against. My family’s new normal was in conflict with the suggestor’s point of view on the world where everything was calm and copacetic and pedicures were still a possibility because there wasn’t too much else pressing. Long story short, my friends: I was a wreck anytime someone suggested I take care of myself first. Furious and righteously indignant. One of the most hurtful things I have ever taken to heart (perhaps unfairly, in retrospect) was an extended family member telling me to go get a manicure after I had texted her a photo of a cheap-but-cool new ring I had just bought while running errands. Her words cut me to the core. How dare she? After all, did she not know what was going on? Why did I deserve that amount of downtime, and how would I fit it in if I did, with all the stuff that needed doing? I was so close to saying “well, sure, if you want to fly here and relieve me for a couple hours!” Oh, hold on. Wait a minute. I just looked in a mirror. What’s this I see? I am STILL that person, still feeling those same feelings. They are hard to cast off, even four years after diagnosis, and even with our family somewhat regaining its sea legs and setting sail more confidently into the future than we did when lung cancer was new. I don’t feel this rage or umbrage as often anymore, especially since my parents themselves have been encouraging me to go and do and play and frolic, and I can honestly say I’ve had a few manicures since the “cruel” text. But, to this day, I definitely still build an immediate barrier between myself and any interloper who deigns to tell me to eat healthy and take more walks “because, after all, you can’t pour from an empty vessel.” (Ohhhh how the empty vessel analogy used to boil my blood!) I build the wall because something in my heart tells me that the person who would say those things does not understand me, my family, my parents’ illnesses, my priorities, my choices, or my daily schedule enough to be allowed to weigh in on what I do. Here’s my thinking: no adult is unaware of the need to eat more vegetables and take more strolls and get more sleep. Nobody in their right mind would deny that this is the ideal. But a serious diagnosis upsets every single ideal that a person and their loved ones have embraced and looked forward to. The anticipated and planned future of day to day or year to year fades away, and survival becomes moment to moment. Anyone who has been through it knows this intimately, and I can’t help but doubt the wisdom (not the good intentions, mind you, but the actual wisdom) of those who have not been through this minefield to understand the situation well enough to tell me to eat a vegetable and have it be sagely helpful to my needs. In fact, I recently told a good friend, a fellow caregiver, that “eat better and get more sleep” must have become society’s newest “bless you!,” because I’m hearing it given automatically after telling folks about my situation, just as automatically as they would bless me if I had sneezed. To put things more bluntly: anyone who has not experienced the particular choice of sacrifice for the sake of a loved one’s health/convenience/safety (etc) that a caregiver makes every day has no business telling me what to do, because they have no comprehension of the logistics of my day, and all that must fit inside it, and all the priorities that are NOT me or mine. Don’t get me wrong: I am not advocating for a lack of exercise, sleep, or vegetables. Do I even need to include that disclaimer? I don’t live under a rock and I wasn’t born last night. But that is precisely my point: we must appreciate the intelligence and common sense of caregivers enough to know that such vapid advice does not add information or value to the caregiver’s toolbox. Instead, we as caregivers must encourage more widespread awareness of our situations and all they entail and require, so that people who do have the desire and intention to help can contribute more meaningfully than by speaking platitudes. In other words: I frequently advise extended family and friends of cancer patients to refrain from instructing the caregiver, and to instead LEARN from the caregiver. Don’t tell a caregiver what to do. HELP the caregiver do what he needs to do. If you want him to have time to go fishing or get to the gym, then offer to cook a meal for his family. Better yet, just cook the meal and bring it over, without pressuring the afflicted family to socialize if they do not wish to. If you are trying to support a caregiver, and if you remember nothing else I say here, remember this: try and understand that checking things off the “to-do” list can often be the most satisfying “self-care” that there is. Don’t guilt me for not eating vegetables or not going to the coffee shop when that same thirty minutes could be used to do a chore that’s been bugging me for weeks. Please trust the person actually living in the situation to know what would de-stress the person the most. Do not insert your assumptions. In fact, feel free to ask how you can encourage the caregiver in completing that stressful task. Don’t automatically resort to the incentives system you might use with a child (“hey, let’s get ice cream if you finish that paperwork by noon!”), but ask the caregiver in a meaningful way what support structure he or she needs in order to knock it out (and, hey, it might just be ice cream—the point is to not assume, and not to place yourself in a position of authority). If you are a caregiver, and if you remember nothing else I say here, remember this: encourage those in your life (who honestly want to help) to think of a concrete skill they have or task they could fit into their own busy schedules, and offer them the advice that it would be lovely if they could use that favor as testament to their sincere intent to contribute to the team. Demonstrate that this is the way you could be given the extra thirty minutes in your day for rejuvenation. Empower and enfranchise yourself, caregiver friends: there truly are gems among your networks who want to assist you, but they’ve been given bad information by multiple sources and industries, so they don’t know any better when they suggest that extra piece of broccoli. Nobody is an expert in your situation except you. Nobody is an expert in your loved one’s experience except your loved one. You two should be the instructors, and everyone else in your circles should be the instructed. If I had thought of that earlier, it may have saved me months of anguish and isolation when dealing with friends and extended family members, because I would have broken my assumption that they did not care to “get” it, and I would have filled my toolbox with helpful resources (in the form of helping hands) much more quickly than I did. Come to think of it, I also should have divorced myself long ago from the notion that someone must fully understand my situation before helping me, but that’s a story for another time.
  4. 2 points
    Thank YOU, my friend! UGH, I am so sorry for the texts and the comments from the aunt brigade. I totally get it, and I know everyone here totally totally understands. Don't you just love when folks' idea of help is help that they can give on their schedule and with their own priorities and preferences? I'm especially sorry that your aunt's particular sort of self-care is harmful, and that you have to witness that on top of everything else you are dealing with. Thank you for the sense of perspective: I have often come close to thinking that one advantage of not having much local family is the lack of interlopers, but I have yet to be wise enough to think that through. Thank you for sharing this nugget of truth with me! You are so right that managing help--wanted or unwanted--is a job unto itself. They don't call them "personal assistants" for nothing! Ha! And thank you, also, for the point about the to-do list. It is so profound what ticking through a list can do for your soul, isn't it? You raise such a phenomenal point about the list giving us some modicum of control over our days! I am SO thankful for you, as well. Thank you so much for your kind words, my friend. We are all a family and we are all in this together! 💚💚💚
  5. 1 point
    Charles

    Durvalumab

    Yep, and even after not having a treatment for 2 weeks, then a month the second time, and now this time,6 weeks since any new Imfinzi has entered my body. I do have the best oncologist in the universe working my case though, his name is GOD and the other one, one of the best in the world inasmuch as what to do next about all the adverse reactions and side effects I have experienced while on this treacherous journey that we all walk on Imfinzi. I can hardly imagine that all this started out with a tumor larger than a grapefruit and LITERALLY took up my whole lung, had my right lung partially collapsed and now is about the area of a WALNUT, 2 1/2 inches x 1.5 inches and the radiologist doesn't use the word LARGE anymore in his description of it in the latest PET/CT, it is now a "masslike conglomeration" I would say this is grounds for a celebration in my household but our work is not yet finished, we have a walnut to eat! Talk at yall later.;...... Charles
  6. 1 point
    KimmyJG

    Caregiver

    Hi everyone! I am joining this because I take car of my dad who has Stage 4 lung cancer. I just wanted a place where I could get some support.
  7. 1 point
    Barb1260

    Durvalumab

    Yay! Congrats!
  8. 1 point
    Denise C

    Stage IIIA Lung Cancer

    Tom, Thank you for the response. I will be sure to read Lung Cancer 101 as I am trying to gather as much information as I can in preparation for our meeting with the oncologist. Denise
  9. 1 point
    Hi Min, I was born and raised in Essex County, NJ- welcome to our group. I can certainly understand the shock you are experiencing, the EGFR Lung Cancers affect primarily healthy women. For some unknown reason, asian women most commonly have the EGFR driver mutation. In the US, most EGFRs start on Tagrisso, however that's not always the case over seas. I suspect it has to do with the cost of these medications (which range $13,000-$15,000 per month). In Millburn, you might reach out to St Barnabas, the head of thoracic oncology trained at Harvard, there may be some support programs there. As you know Memorial Sloan Kettering is across the river and down in B-Town on the Jersey side. I now live in KC where I was surprised there was no lung cancer support group, so I started one up. Keep us posted and we'll do the best we can to support you. Michelle
  10. 1 point
    Denise C

    Stage IIIA Lung Cancer

    Steff, Thank you. I feel that any and all information helps. I appreciate you taking the time to respond. We are still wating on the pathology results which will hopefully be available in the next 5 to 7 business days. Until then we are living our lives and trying to gather as much information as possible. Denise
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