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Showing content with the highest reputation since 08/05/2020 in all areas

  1. 5 points
    Golfman

    Who has Small Cell Lung Cancer?

    I was diagnosed in Feb 2019. Had a brain MET and some nodes in the lining of my right lung. It happened very fast. One day I'm shoveling snow and feeling good, next day I'm wondering what the heck happened and my life changed. I experienced shortness of breath, so they did scans and a thoracentesis (draining fluid from my chest), a biopsy, then they gave me the news. SCLC. They immediately put me on chemo with carboplatin, etoposide and tecentriq, which was recently approved for first line treatment. They found that I was allergic to etoposide, so they substituted paxlitaxel, and I still have weekly infusions of it to this day. One of my doctors suggested whole brain radiation in May, but we refused. Then the brain MET disappeared, which I think was due to tecentriq, but no one knows for sure. Only God knows. It's gone. For now. Paxlitaxel side effects are not pleasant, but I can still play some golf. I'm now a frequent flier at the cancer center and still not an expert on this disease. There are so many things going on now in research that I could never keep fully up to date. I rely on my medical team to be the experts, to be up to date on SCLC and to do their thing exceptionally well. I ask tons of questions and still make the final medical decisions. But I think the most important aspect of this disease is attitude! Positive or negative, that's the only thing I can control. I see some patients who are so depressed they make me feel depressed. That's not a good way to go through this thing. I've experienced this depression and can say that it's really ugly. I've even heard that negative attitude can affect not just the patient but also the disease. So I'm in charge of my attitude and rely on the help of family and friends to keep me positive. Avoid negative crap always. So that's the extent of my SCLC experience. I suggest that patients and supporters stay focused on positive attitude. Do whatever is necessary to keep your wife's attitude positive. That's a very, very tough task, maybe even tougher than the treatment of this disease.
  2. 4 points
    LexieCat

    Who has Small Cell Lung Cancer?

    I kinda think there's always a letdown after a big effort is finished. I'm a retired prosecutor and I used to feel that way after I finished a trial and the jury was out. It's like you've done all you can, and there's a sense of being at the mercy of forces outside your control, after a big push giving it everything you've got. Glad you're feeling better--I think it just takes time to adjust to not having to actively battle.
  3. 3 points
    Olivia

    Who has Small Cell Lung Cancer?

    Wow, thank you so much for posting and letting us know how you’ve come to far since your diagnosis. It definitely gives us hope that our loved ones can do this. My dad is definitely dealing with some depression, which he isn’t really attempting to tackle. But that’s what depression does to you. My sister and I are just reminding him every day to keep fighting and keep showing up for himself. I’m definitely going to share your story with him in hopes it gives him some more hope.
  4. 2 points
    LexieCat

    Another newbie

    Welcome from me, too! I'm in sort of a similar boat right now, three years after a lobectomy for what was, at the time, very early stage. My last scan and a followup PET CT suggests I've got some pretty significant involvement at this point--appears to be Stage IV but I have a bronchoscopy for biopsy on Monday, and I'll also be waiting for pathology results and molecular studies to determine a treatment plan. I've been around these forums for three years, and you will find it a GREAT place for information and support (and, believe it or not, a few laughs--I've appointed myself deputy in charge of comic relief). Glad you found us.
  5. 2 points
    ChiMama 1a is great news and you sound like you’re well on the road to recovery. The pain will diminish, so stay as comfortable as you can. I’m thrilled with this update. You stuck with it. You’ve had a tough time but it sounds like you’re in the other side of the hill. Keep us updated and enjoy every day. Lou
  6. 2 points
    BridgetO

    Another newbie

    Hi Sabacat and welcome. It's normal to be terrified. The waiting is the hardest part. Once you have all your test results and an initial treatment plan, Many/most people find that it starts to become easier. and positive outlooks become possible. Your 3 cm mass may not be growing as fast as you fear. X-rays are not very good at "seeing" lung nodules or masses. So it may well have been there earlier than October. You definitely have a chance of beating this cancer, or at least having it reduced to the status of a chronic illness that you can live with. As you can see from reading people's stories on this forum, there are a have been a lot of new treatments for lung cancer for lung cancer developed in the last few years, and more are being approved all the time. So older statistics, usually based on 5-year survival rates are not very useful. You'll also see on here a bunch of stage 4 survivors who are living with cancer and having good quality of live. So hang in there. There is hope and being tough and strong willed will definitely be a plus Keep us posted and ask whatever questions you have. We're here to support you. Bridget O
  7. 2 points
    0621121974

    Who has Small Cell Lung Cancer?

    I think that there is nothing wrong with feeling negative at times, if that is how you feel. No one should be made to feel bad for that. I am not a believer of your attitude can fix this horrible disease. Not that I think there is anything wrong with those that handle their situation that way. You should do what works for you. I think people do their best, and sometimes it’s ok to be down. Sometimes its ok to ask why me? Because facts are facts, and not everyone will have a good outcome. I am thankful, but positive, no. Hope for the best, but prepare for the worst is how I handle it. Not trying to be a downer, but as a person that visits sites for information and to read people’s stories, I personally prefer a more realistic view and approach. I hope you all and your loved ones continue to do well. 😊
  8. 2 points
    Update: Improving every day, slowly. I try to go outside in the morning to water the plants and move around, look at the birds & rabbits & lizards in the yard and feel a sense of normalcy. Still have massive pain on my side where the chest tubes were. Almost any movement hurts. I tried the tramadol at night to help the pain so I can sleep but it doesn't work. So I find a pain free position and stay there! Pathology came back "1.2cm minimally invasive adenocarcinoma, non-mucinous; G1 well differentiated. pT1mi, pN0" Stage 1a. No further treatment needed, just the usual scans. Yay! Hopefully my dog can come home Friday!
  9. 2 points
    Wow ... That's a long time taking the Mg pills. I think you told me that previously. My wife is taking 2 400mg tablets in the morning and 2 in the evening for a total of 1600mg a day. Her Mg level drops to 1.1 or 1.2 almost consistently every week. We've learned to stay around the cancer center after her blood is taken. Usually we go get some lunch and then they call to have us come back. I believe the IV has 4g of Mg in a saline solution. My wife doesn't stay hydrated like she should so the IV helps with this. We just deal with it. We are thankful that the cancer is stable. Better to deal with Mg Issues than growing cancer. Steve
  10. 2 points
    LouT

    Thoracic Surgery Tips and Tricks

    Okay, your surgery is scheduled. This post is meant to provide you with information and tips to prepare for thoracic surgery, what to do in the hospital, and when you return home. I’m hoping that the information here will alleviate some of your anxiety and fears. You can do this; you will get through it! Be open to the support of family and friends as well as the folks here at Lungevity. We are here for you. Pre-Surgery o Eat healthily, get sleep, and also do some physical activity. It might just be walking, but the better your body works before surgery, the more quickly it can recover post-surgery. o Make sure you have someone to count on for your first few days at home. You'll be tired and likely in some discomfort, so having someone there to assist you when you need it can be a real help. If you live alone and have Medicare, you can ask your doctor for a home nurse to visit, check on your progress, and change dressings. In-home care also lets you ask questions about your recovery. o Get a wedge pillow. It will allow you to sleep in a more comfortable position, take the pressure off your back, and improve your ability to breathe comfortably. You may also want to keep a small pillow available to press against your body's surgery side when you cough. o Arrange the nightstand with things you may need, so you have them within easy reach. Remember stretching is something to avoid after surgery. o Make sure to fill your pain prescriptions and take them as recommended. Once you’re home, you'll need to be active, and it is harder to do to if you’re in pain. The meds are not a "forever thing," but are necessary to keep you comfortable enough to recover faster. o Have the numbers of your doctors readily available to call if you have questions or experience symptoms that concern you. o Pack your “hospital bag” bringing only the things you’ll need. Remember, a thoracic procedure requires a post-surgical stay of a few days before being discharged. In the Hospital o Show up on time. o On the day of surgery, after the surgery takes place, they will likely have you sit up, stand, or even have you walk to a chair to sit for a bit. It is important to get you moving and exercise your lungs. Remember the surgeon likely gave you a pain block, so it’s unlikely you’ll feel pain. o You should be given a Spirometer (if not, ask for one). Use it often; it will help to keep your lungs clear and rebuild lung capacity. o TAKE YOUR PAIN MEDS AS INSTRUCTED. The pain block will wear off within 12-20 hours after surgery, and without the additional pain meds, you will get uncomfortable quickly, so please take the pain meds as prescribed. o The day after surgery, you, your IV’s and chest tube/pump will go for a walk around the ward. Do not be an overachiever; do what is required and practice slow deep breathing when exercising. o If you miss bathing, the nurse can provide towelettes as a substitute. o Once you are stable, if your lung is not leaking air, and your body is properly absorbing post-surgery fluids, you’ll be set up for discharge. They’ll remove the chest tube, IV’s, and other paraphernalia they’ve attached, and you’ll be ready to go home. Home Post-Surgery o Have a plan to exercise. It should be walking; at first around your house and later outside (sunshine and fresh air are excellent tonics). But take it easy--this is not a sprint but a long race that you will win with each increasing step over time. o Continue to use your spirometer; it is your best friend for increasing lung strength and function. o You will be sent you home with pain meds. Take them as prescribed until pain is diminished. Pain restricts exercise and prolongs healing. o REST WHEN YOU FEEL TIRED. Sorry for the caps, but this is important. You've had major surgery and need time to heal, adjust to changes, and adapt to old activities. Be kind to yourself and give yourself grace until you’re strong enough to manage your new normal. o If you have any symptoms that concern you contact your doctor asap. For example, some people may hear/feel gurgling when breathing while it may be nothing it might be a condition (subcutaneous emphysema) that your doctor should be aware of. It can often resolve on its own, but keeping the doctor updated is a wise choice. o When you're feeling up to it, update us on our forum. Let us know how you're doing and ask any questions. We're here for you! Recovery differs for everyone; in my case it was about 6 weeks before I was almost back to routine activities after my Lobectomy. Please stop into the forum if you have questions. A good group of people will be there for you.
  11. 2 points
    LexieCat

    Thoracic Surgery Tips and Tricks

    Great summary, Lou, I can't think of a thing to add. Except maybe one. It's a rare situation that doesn't affect most people, but it did me and a few other people I know. I developed something called "crepitus" or "sub-cutaneous emphysema" right after surgery. Has nothing to do with what most people think of as emphysema. This is a small leak of air that gets into the tissues under your skin (sub-cutaneous). It made me feel at first like my glands in my neck were swollen and then it spread to my whole chest and up my face. I looked like a chipmunk with the mumps! Sometimes this resolves on its own but if it progresses, it becomes VERY uncomfortable--if you look it up online you can see some people have even their eyes swollen shut! So you do NOT want to let it get to that point. I had to go back in the hospital for a few days with a chest tube to slowly deflate, and then I was fine. As I said, it's pretty rare but it does happen, and if it does, it's something to report to your doctor. Not generally life-threatening, but a complication you want to address ASAP.
  12. 2 points
    TJM

    Who has Small Cell Lung Cancer?

    I have Large Cell Neoecrodin Non small cell lung cancer. It supposedly acts much more like SCLC than NSCLC and has the same first line treatment. So I tend to follow this forum the most. Had lower right lobe removed, Chemo (cis/etp) and adjunctive radiation. I should be NED.....will find out soon enough. As for depression, I just finished treatment last week and almost immediately went to a dark place for a solid three days. By far the most depressed since all this started in January. Yesterday was the first day I felt mentally better since last week. No idea why, just glad the cloud has passed. Wishing you all the best Peace Tom.
  13. 1 point
    GaryG

    Another newbie

    Hi Susan: Welcome to the site. You already made a great decision by joining and reading . We all had 2 things in common beside cancer. First we were terrified, second we were even more terrified because of the wait involved. Personally i share a similar story with the coffee even though I did not drink as much. Not drinking coffee will help you with side effects especially if you are on a Proton-pump inhibitor. Like Tom said (and we he talks people listen) there are many new effective treatments for lung cancer and hopefully your medical team will put you on the right track. Welcome to our site and we are here eager to help. Best of luck.
  14. 1 point
    MyWifeSCLC

    SCLC: Case Notes - Low Na Issues

    thx Tom ... My hope is that others that follow may get something out of these actual notes from my wife's treatment. I certainly want to caution others that they may have different symptoms and should only view these as potential things that could happen. Steve
  15. 1 point
    Lin wilki

    Another newbie

    Fear of the unknown creates great anxiety. Once you get your diagnosis and a treatment plan everything settles down. You just get going on the business of dealing with treatment and LIVING! Good luck to you and know there’s lots of folks here who have been where you are and are here to support you
  16. 1 point
    Good news!! The pain will continue to improve until it's virtually gone. Just remember to stay on top of those scans!
  17. 1 point
    Got mine loaded up now too!
  18. 1 point
    During a Lungevity's survivors zoom meet-up we discussed how best to make personal medical history available if one is incapacitated and family members are not present. One can purchase bracelets that warn of specific medical conditions and allergies, but we lung cancer survivors often have complex medical conditions and side-effects that can complicate diagnosis and treatment by emergency medicine professionals. A survivor mentioned the Health App found on an iPhone, and sure enough, one was hanging out on my phone completely devoid of any information. No longer, now it contains my complete medical history, and I've set it so emergency medical personnel can access this information right from the lock screen without entering my password or using biometrics to unlock my phone. Here is what I put on my phone: My entire lung cancer treatment history, dates of treatments, drugs used, types and areas of radiation administered Other chronic medical conditions: sleep apnea, Sjorgren's Syndrome and the like. My surgical history, types of surgeries, and dates Chronic pain conditions and locations Hard IV stick Intubation requires a small endotracheal tube Medication allergies Prescription Medication taken by type of medication and dose Blood Type Height, weight Two emergency contacts, by name and phone number Other models of cell phone have similar capability. Use this technology feature. It may save your life. Stay the course. Tom
  19. 1 point
    LouT

    Thoracic Surgery Tips and Tricks

    Love you right back Michelle. Lou
  20. 1 point
    TJM

    The End is Drawing Near

    I've been on the caregiver side twice. Once for my brother and the other my father. It is not an easy thing to do but I feel that in both cases it was good for me both mentally and emotionally. I was not there for my mother and regret it to this day. Remember to take care of yourself. And do not feel bad if one of your emotions is relief when it is over. You are in my thoughts Peace Tom
  21. 0 points
    Sabacat

    Another newbie

    Hi all - Yet another newbie here. I’ve been lurking a bit and have been astonished at some of your success stories! That said, although I keep telling myself it will be possible for me, too, I’m terrified. And the constant waiting for test results is making it worse. Here’s what little I know at this point. I’m 65, have been healthy as a horse for my entire life with the exception of being diagnosed with Barrett’s esophagus about 7 years ago. I then promptly did everything I was told (gave up the coffee that I drank by the pot, not a cup, no carbonated beverages, drank only herbal tea, etc) and my next 4 scans showed no Barrett’s pathology. I did continue Dexilant because I still had symptoms and occasionally had to do a few weeks on double if I had a flare-up. In April, I had a bit of cough - common with a flare - and the increased med helped. But when I went back to normal dose, it got worse but still occurred at times when I had just eaten or was bending over —again consistent with GERD/Barrett’s. Then, in late June, my ankles started swelling. First concern was DVT, but none found. A week of Lasix didn’t fix it, so off to a CT angiogram... and then the bottom dropped out. Initially seen was a 3cm mass In right lung and a few lymph nodes. A few days later, the PET showed more lymph nodes, one at the collarbone which I’m told makes it stage 4, plus a small node on the Left adrenal. We decided to go to Duke, where we lived and received care for many years and always have returned for anything serious. They drew off a lot of pleural effusion but were unable to use it for testing purposes; did do a brain MRI which was, thankfully, clear. Oncologist seems sure it is NSCLC, not sure why. He also thinks the pleural effusion is malignant, although they couldn’t fined any cancer cells in it. I’m back there now tomorrow AM for biopsy of the easy to reach lymph node, after which we have to wait till 8/21 for all the molecular testing to be in so we can meet with the oncologist to discuss treatment plan. Oh, and today their radiologist reviewed the PET (done elsewhere) and seems to be interpreting differently, mentioning something about the bronchus. And the original 3cm mass was not visible on my late October X-ray, so seems to be moving very fast, which makes me quite frantic about waiting around doing nothing for another two weeks. My husband is 83 - also healthy - and I can’t bear the thought of not being there when his time comes. With a 17 year age difference, we never imagined such a scenario. I am very tough and strong-willed and willing to do whatever I have to. Do I have a chance of beating this based on your collective knowledge? Truly trying to maintain a positive outlook but all these unknowns make it nearly impossible. Susan
  22. 0 points
    VM1234

    The End is Drawing Near

    The waiting is so gut wrenching. Mixed feelings. He's totally confused and not eating, guess that means he's ready to leave. He's ready. I'm ready for him. Others aren't ready. So hard, so hard, as you all know.
  23. 0 points
    VM1234

    The End is Drawing Near

    Thank you all for your kind words. My biggest support has been from my sister. She drives clear across town to keep me company days when I'm a nervous wreck being alone with him.
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