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Showing content with the highest reputation on 02/23/2021 in all areas

  1. Susan Cornett

    5 Years!

    Today marks 5 years since my diagnosis. It seems like just yesterday but also a lifetime ago - at the same time. It brought me to the club I never wanted to join but introduced me to so many wonderful people. I am thankful for my medical team and all of the research and advancements that got me to this point. Looking forward to marking next year's cancerversary with all of you.
    4 points
  2. LexieCat

    Confession

    Hey, nothing wrong with publicizing anything on the forums (other than private messages without permission of the sender). We are a public forum. Anyone who wants to wander in here and post (or read) can. That's one reason we discourage people from posting personal info like addresses, phone numbers, personal email addresses, etc. There are bad guys who would exploit that information. But what is posted on the public forums is readily accessible to all, and if you think it will help somebody, absolutely nothing wrong with posting a link (as long as the other site doesn't have a rule again
    3 points
  3. Hi Matt, Ditto on what Gary said. It sounds like you are very close with your Mom. I am 62 and have stage IV Non small cell lung cancer. My youngest daughter who is 37 is my rock and I don’t know what I’d do without her! She’s more help to me than my husband. I forget though how hard it is on her to be that rock! Just like my daughter, being strong for your Mom means more than you know and is vital to her fighting this. How old is your Mom? I am with Gary on the fact that they seem to be waiting so long. I couldn’t have surgery and if your Mom is a good candidate for it
    3 points
  4. LUNGevityKristin

    Confession

    Please share away! We are here for anyone and everyone who needs support!
    2 points
  5. GaryG

    Confession

    Tom: What's so sad about your post is the current state of affair lung cancer . Imagine the benefits to every body should all these blogs, Facebook communities and non contributors all got together in one single setting to share experiences and help one another. Imagine the influence on Politicians, pharma and providers that will create. One can only hope.
    2 points
  6. Babs

    SCLC/Brother

    Hi Nikki, I have stage IV NSCLC and Superior Vena Cava Syndrome. I swelled terribly in my face and neck. That is how I found I had cancer. I went in and the chest X-ray showed a mass. They hospitalized me. The swelling was due to the Superior Vena Cava being occluded and the blood had nowhere to go. It resolved on its own and the blood rerouted through the veins in my chest. I am doing fine 2 years later. The vein is still blocked and the blood flow in my chest is still stable. How long has he been swollen? If they could get the blood rerouted I’m sure he would feel so much bett
    2 points
  7. Hi Matt and welcome. Sorry about your Mom's diagnostics and hopefully the doctors will have the situation under control. First of all the good news is that the cancer is operable and that's the best solution for treating cancer. The question remains is why doesn't the doctor confirm exactly what type of cancer your Mom has after performing the biopsy? Also do you know if they performed a biomarker test to look for mutation? Granted the nodules are not very large but why the long wait (since November 2020) to do the second biopsy and MRI? It is good to be calm especially when you don't have
    2 points
  8. I'd love to have him join Tom, he's more reserved than me and so I'll have warm him up to the idea. Also I think he's quite nervous to read so much about his condition. I do all the researching and advocating for him right now, but he's getting better with speaking about it.
    2 points
  9. @LUNGevityKristin @LexieCat @katavrga @Judy M2 Thank you all for your kind words. Judy, I'm so glad to hear that your dad made it through. The internet is vast but know that I'm on the other side hoping he has many many more days. I think I'll give a couple more updates and also eventually reorganize the content of the earlier posts summarizing what I want every other caregiver to know going into this. February 20, 2021: Update on myself and situation. I think I'm mostly over the grieving period now. I was initially alarmed that it lasted only 1 week in the sense that I was most
    2 points
  10. TJM

    Confession

    😶. I need to confess something. I went on Reddit and perused the lung cancer subreddit. There were so many posts that go unresponded to it was killing me. First I posted about Lungevity and highly recommended people check it out. Did not seem to get much responses. Several posts were regarding surgery and had all of the usual questions. I got one response requesting I post the link to Lou's checklist. I'm not very smart phone literate but decided to see what was possible. Before I knew it, I figured it out and sent it as requested. After more pondering I posted it as a single post so more
    1 point
  11. TJM

    Confession

    I'm trying Gary. Really thought we would see a rush of members via that article on WebMD. Someday Peace Tom
    1 point
  12. Welcome Matt. I am guessing you are my Reddit buddy? I hope finding this site helps you as it has so many others and you find it valuable. I'm pretty confident you will. I have had a lobectomy my self. A little over a year ago. I was a pest on here asking so many questions (just kidding). It is a topic that comes up often. Not sure what motivated Lou, but he came up with this list awhile back. I can attest to it's accuracy and utility. It is a spot on list. But this site offers so much more. Wishing you and your mother the best. Welcome again. Peace Tom PS. Thanks
    1 point
  13. LexieCat

    Confession

    But I gotta confess, I was disappointed in your confession. I was hoping for something juicy!
    1 point
  14. Tom Galli

    SCLC/Brother

    Nikki, So very sorry to learn about your brother. I know of no one who experienced your brother's symptoms in hospice care or in other medical treatment locations. And of course, I have no idea how long your hospice vigil might take. That is a question best directed to hospice staff. I do know the hospice routine consists of gradually increasing morphine doses to ensure your bother feels no pain or discomfort. I wouldn't think there would be a difference from oral or IV dose in terms of inducing sleep. That is the purpose of morphine therapy. I will pray for peace for your brot
    1 point
  15. Matt, Welcome from Warren Michigan. I know the area well for I once commanded the Army Tank Plant at the Detroit Arsenal (11 Mile and Van Dyke). First I'd like to point out that your mother's surgeon is being very aggressive with your mother's treatment approach, and that is a good thing. A tumor in each lung land's one at Stage IV and surgery is normally off the table at Stage IV. Surgery remains the best curative treatment for lung cancer. If surgery turns out to not be feasible, then broker a consultation with a radiation oncologist to see if precision radiation (sometimes substit
    1 point
  16. Thanks Robert
    1 point
  17. When my wife was on Keytruda for about6 months and we found this article, I don't know that it answers your question. https://www.cancercenter.com/community/blog/2018/09/tumor-growth-sometimes-its-a-good-thing
    1 point
  18. TJM

    Keytruda infusion question.

    Darn. I was going to keep that one in my back pocket if correct. I am pretty sure I have read that they may reccomend rechallenge using Chemo if a recurrence happens 6 months or longer after treatment had occured. Keep looking and keep sharing! Peace Tom
    1 point
  19. LouT

    Hello from a newbie

    Kristina, I'll throw my hat in the ring with a "Welcome to our Forum". You've come to a great place to share, learn, witch (when needed) and find many answers from our personal experience. We look forward to hearing more as you both go through your journeys and helping out where we can. Lou
    1 point
  20. TJM

    Hello from a newbie

    Welcome TEAM Burke! Wow. Battling two cancers in the same household! Have you asked for a family discount? Seriously. I'm wishing you both the best and am happy to hear about both the mutation and the good responses. We have some dear freinds, the wife has just finished a two year battle with breast cancer and, like me, is in the wait and watch mode. Harder to do than either of us expected! Kind of like Lexi and I continuing to self injure ourselves, this family is like a doppelganger. Both of us had sons with the exact same disease about the same time. We knew them before but that bonded
    1 point
  21. Susan Cornett

    Hello from a newbie

    Welcome, Kristina! So glad you found us and hope that you find everything you need on this site. You and your husband certainly have your hands full but happy to see that you live close to great care. Hope your husband's success on Tagrisso continues and that you are doing well with your cancer.
    1 point
  22. LexieCat

    Introducing myself

    I'm so happy she has been able to enjoy some of those happy events! My mom died of metastatic breast cancer (which she'd thought was gone after nearly five years) almost 30 years ago. But in that 5 years, she and my dad got to live in Hawaii--her dream place--and she got to do professional flower arranging, which she also always dreamed of doing. That time was so great for her to have. Your mom may be around for quite a bit longer--as noted, new discoveries are being made all the time, and they are starting to crack even the tough nut of SCLC. I think it's great you've been able to start
    1 point
  23. katavrga

    Introducing myself

    Thank you all. Reading your thoughts is such a blessing for me. My Mom is a very private person and doesn't like to talk about her cancer or her struggles, but just the other day I was telling her about the stories I have read here, that proved the relativity of cancer statistics and she was really suprised and interested. For the time she was progression free she saw my brother get married and my little girl start kindergarten, so there were many ups to this period and we are holding on for just a little more time together. Maybe we count as the few people on this planet who are thankfull for
    1 point
  24. TJM

    Introducing myself

    She is young which is a big plus. I'm probably being naive (or hope full) that new treatments are just around the corner. There has been some very promising progress and I actually think we are on the brink of major breakthroughs, actually there have already been many for some specific cancers. My Oncologist thinks in a decade cancers will not be categorized as Lung, Breast, Colon (etc) cancers, but instead be designated based on the mutations and targeted treatments will be the standard as opposed to the scorched earth approach that still prevails for most cancers. My point is, as other
    1 point
  25. D iane

    Introducing myself

    I lost my husband to the small cell beast. We were here for him everyday (one blessing of working from home during a pandemic), and we cherished each and every moment we had between progression. That's really all you can do. I am truly grateful he wasn't too depressed, so neither were we. I actually had him in the shower one morning before a Dr. appt., a follow up from doing the Topotecan treatment. I didn't realize he had pneumonia, only saw him short of breath once and for a short time, however, his blood ox was low and he was sent to the ER, admitted, and that is where he gave up a few
    1 point
  26. LouT

    Introducing myself

    Kata, Like others here, I'm sorry to hear about your Mother's cancer. Gary and Bridget have already pointed out that there is "Life Besides Cancer". If there wasn't, then what would be the purpose of wanting to survive it. Learn all you can, share success stories with your Mother and live life with her. Go out for a walk, do anything you can (during this crazy time of Covid), but make life fun and rewarding. Cancer may well be the thing that takes any of us survivors out, but maybe not. Chances for our survival get better every day and my belief is; "I will never be as young as I am
    1 point
  27. BridgetO

    Introducing myself

    Hi Kata, Gary is right, we ever know if that day will come. I'm a survivor of stage 1 non-small-cell lung cancer, so my prognosis is fairly rosy, so far as lung cancer goes. However, I previously had a rare and aggressive form of cervical/endometrial cancer, Stage 3, with a really bad prognosis. For a few years, i wouldn't make any plans for more than a couple months in the future because I didn't think I was going to survive long. Well, In March it will be 10 years since my diagnosis. Which goes to show that we just don't know and doctors just don't know. Best wishes to your mom. I hope she c
    1 point
  28. GaryG

    Introducing myself

    Hi Kata: Welcome to our group and sorry to hear about your Mom. It seems like cancer, treatment and depression go hand in hand. First of all you can't plan for the day when your Mom gets sicker because you don't know if that day will ever come. There is always hope that the new drug will help and you should only plan for that day. And yes she can have a life beside cancer. For example I just returned from playing tennis. As cancer patients we take it one day at a time and react to the good and bad accordingly. You are welcome to visit here often, ask question and learn from our experiences. W
    1 point
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