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  1. Today
  2. Hi Everyone, I joined this forum because my mom is recently diagnosed with lung adenocarcinoma in China. It is a big shock to me and my family since she never smoked in her 70-year of life and we never had a relative who had any forms of cancer. My dad is a life-long smoker though. Cancer seemed so far away to me before and suddenly it is just right in front. I have done a lot of online research last month and it is still a lot to take. I want to be more informed about lung cancer and its latest treatment through this community, and want to be part of group of people with similar experiences. My mom was coughing for over a month and went to see the doctor in early June. The CT scan showed a tumor in lower right lung about 3 cm in size. She then had PET CT, MRI, bone scan, and enhanced CT. None of those showed the cancer has spread. However, during the micro invasive surgery, the doctor found out the cancer has spread to the upper and mid right lung and stopped the surgery without touching the tumor, but did took small piece of tissue with a spread dot for biopsy and genetic testing. The genetic test of blood showed nothing. But the genetic test of the tissue sample showed EGFR 19-Del mutation. Her doctor prescribed Gefitinib (Iressa) for her first line treatment last week, saying her mutation responds very well to Gefitinib. However, i read that NCCN guideline is to use the 3rd generation TKI, Osimertinib (Tagrisso), as the first line treatment for EGFR mutation. Not sure if anyone here can shed some light here that which one is a better option. Also, I live in New Jersey. Are there any local groups in either New Jersey or New York that i can join? Thanks you, Min
  3. Hi, I know this is an old thread but I wonder if any of you had advice re KRAS and Stage IV NSCLC. My mother-in-law was diagnosed October 2018 with Stage 3, N2, underwent chemo-radiation for 6 weeks. In January she started durvamulab. In addition to KRAS, she has a very high PDL1 expression (90%), but was not a smoker. Her lung tumor and lymph nodes now appear clear, but she had metastasis to her skull identified in May and now appears to have mets to her L4, which will be treated with targeted radiation, and may have another bone tumor in her skull. Her oncologist is considering whether to change her immunotherapy drug as durva hasn't seemed to have helped as well as whether another round of chemo may be warranted. Curious if there was any connection between Opdivo and KRAS; or if you have any insights into KRAS related trials that could be worth considering. We're in NYC, but I wonder if there's non-NYC institutions we should be connecting with. Thanks so much for reading. Sending lots of love and best wishes
  4. Yesterday
  5. 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! 💚💚💚
  6. Danielle, As always you have eloquently put into words how I feel every freaking day! Thank you! My to-do list is sometimes the most satisfactory thing I have during my day (especially since I gave up "bad carbs" at the beginning of the year! lol). My to-do list is the only thing I have control over most days. And although, 4 years into this, the to-do list has less to do with cancer related stuff (right now anyway), I feel it is still my way to have some control over the crazy life of a lung cancer caregiver/advocate. I have an aunt that always tells me to get some sleep or, take care of myself, when her idea of taking care of herself is heavy drinking. She always says she is there if I need any help, but it's only help that she wants to give when it is convenient for her. Her way of helping is to text me late at night (when she's inebriated) to tell me thinks like "I think your dad needs to go to a rest home so your mom can focus on herself" or "Your parents need to sell their house to get something smaller", and the list goes on and on and on and on.... On one hand, I sometimes feel closed off because our family and support system is tiny (2 aunts is all), but on the other hand, I only have 2 other people telling me to get some sleep. No matter what the situation, managing the "do gooders" in our life is a full-time job in and of itself! Your support for your mom and dad is so similar to mine that it is scary. We are 2 peas in a pod and I am thankful for you every day. Take care, my friend, (or don't, do what you need to!)
  7. 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.
  8. Thanks Tom, will try the peppermint.
  9. Last week
  10. Isabelle, Try mint. Buy some peppermint abstract, put a drop on a teaspoon and lick it off. Stay the course. Tom
  11. Thanks will up the water and the salt, my sodium level was actually low due to fluid overload. Will make sure that doesn’t happen again. Blessings
  12. Salt. That works to jump start the taste buds.
  13. Isabelle49 Are you drinking lots of water ? that is very important during chemo and after. I mean lots. Bob
  14. After the first round of chemo, I have a non working tongue. Everything tastes like cardboard and is nauseating. I can only tolerate very tiny amounts of food, in spite of the phenergan. No vomiting though, thanks goodness. First cup of coffee today in 4 days, tastes like warm air over my tongue and this coffee is made from very dark espresso beans. Any suggestions on how to jump start my taste buds so I can eat again!!! Thanks and Blessings to all
  15. My oncologist put me on Votrient, which is a targeted therapy drug, which treats only renal cell carcinoma. It almost completely cleared my lungs of all of my tumors (I was down to only one 6mm "nodule"). It worked in only seven weeks!! Yes, it was amazing because I had numerous masses in my lungs, prior to taking this drug, which were 2-3 cm each. However, the major side effect I couldn't get under control, with the help of my oncology nurse and my GP, was high blood pressure. I went off of Votrient for 45 days and let my body take a break when my blood pressure became completely out of control. Now they are having me take the other targeted therapy drug for RCC and it is Inlyta. Unfortunately, I am already experiencing high blood pressure. This is even after increasing my normal Bp medication. My question is has anyone experienced high blood pressure with these drugs or other targeted therapy drugs, and overcome the high blood pressure side effect? If so, I'd love to hear how you were able to manage your blood pressure while on them.
  16. Earlier
  17. Does anyone have any information on this study? Did anyone participate? It looks like it concluded in January. I’m very interested in the results. https://www.dana-farber.org/thoracic-lung-cancer-treatment-center/inherited-egfr-t790m-mutations/
  18. Anyone have experience dealing with stage 4 non small cell lung cancer, KRAS mutation and low PDL-1 expressor? My husband had surgery just over a year ago where a tumour was removed in lower and middle right lung. He now has 10+ micro nodules in his left lung. I realize this is a long shot. I’m new to this forum. thanks.
  19. Facing a lung cancer diagnosis changes a person’s perspective about what matters in life and what doesn’t. Being diagnosed with cancer makes you put absolutely everything else to the side, or totally out of mind. You have the chance to let back in only the things that really matter back into your conscious mind. If you can do that, and spend more time focusing on things that really matter in the present moment, you will have completely changed and improved your mind and your life. I still get caught up in feeling anxious or scared about what might happen in the future and the negative impact it could have on my family, especially my wife and daughters. What’s helped me has been to realize that they are thoughts – they don’t have a physical presence anywhere and if you observe them but don’t chase after them, they go away. If I could give advice to someone newly diagnosed, I’d probably want to say a few things. 1. Slow down. Information is going to be coming at you really fast and it can be overwhelming, especially with the internet making everything move at hyper speed. Take your time to digest what’s out there in terms of treatment options, support systems, heavy medical information, etc. 2. Get yourself into a respected cancer center as soon as possible. Find an oncologist that you trust and have a good relationship with, and then TRUST that doctor. 3. Take everything, except what your oncologist tells you to your face, with a grain of salt. There is a ton of real, semi-bogus and totally bogus information out there about magical cures and treatments. Ask your doctor about all of them but, in the end, do what he or she advises. 4. Take a step back, look at the road ahead as objectively as you can and try to be practical. It is the “C” word but, after all, it’s an illness not a curse or a death sentence. Come up with a treatment plan together with your doctor, follow that plan and do what you need to do in order to stay healthy 5. Don’t give cancer more power than it already has by thinking you can’t face it and just giving up. You can face it. Maybe not today, or all the time, but eventually and most of the time you can. Lung cancer is just the same as any other kind of cancer. It will take the people you love just as heartlessly as any other form of the disease. It’s really good at taking people away; men and women, smokers and non-smokers, old and young, any race and origin. In fact, it’s better at that than most other cancers. We could all get cancer, and none of us would deserve it. We should fight it with research funding, trials, promoting new and existing treatments, by helping people pay for treatment, and everything else at our disposal. Not giving lung cancer the fight it deserves leaves us all that much more powerless to stop it from taking away someone we love.
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