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Showing content with the highest reputation since 06/30/2020 in Posts

  1. 2 points
    GaryG

    Terrified newbie

    CLM : I am also newly diagnosed but joining this site was extremely helpful. There is no shortage of support and good advise but reading https://lungevity.org/for-patients-caregivers/lung-cancer-101/recently-diagnosed helped me understand how to interact with my doctor and ask the right questions. I wish you the best and be strong. Gary.
  2. 1 point
    Co-Survivors! We now have a meetup just for you! LUNGevity Foundation Caregiver Meetups will be twice a month on Thursdays at 7pm E. Join us if you can on Thursday July 16th. The link to join on that date is https://zoom.us/j/96667587148?pwd=YWM5KzdOM3JnNFQ1QVhHMmZUNWxIUT09
  3. 1 point
    sashjo

    Side effects (gums)

    Thanks for all the advice Tom! I'm going to check with my dentist and see what he's got to say. Warmest Regards - Josh
  4. 1 point
    Tom Galli

    Side effects (gums)

    Josh, If you are in treatment, and are eating less, you have an "eating inorder." Try ice cream or milk shakes or something with lots of calories. During chemo, everything tasted so bad that I stopped eating. My wife's research, a dietitian and a RN, discovered mint flavored items were appetite enhancers for folks receiving chemotherapy. She purchased commercial chocolate mint ice cream to test the theory, and when proved, she started churning up her own adding crushed Oreo mint cookies into the blend to add even more calories. Don't drop weight during chemo! Mouth sores are hard to deal with. I would think a dermatologist would be helpful. I consulted with my dentist and he prescribed a regime of prescription mouth rinses that dealt with my sores. I've heard the real "old time survivors" tell me a mouth rinse with a weak concentration of baking soda worked. I didn't try that, but relied on my dentist. OBTW, if in chemotherapy, it is a good idea to have regular dental checkups. Stay the course. Tom
  5. 1 point
    snowmom

    Keytruda

    Hi Rose, Glad you are doing well. I believe that faith, knowledge, and a positive attitude are important factors on this cancer journey we all share. I also have been on an every 3 week regimen . As background, I was diagnosed in April of 2018. My main nodule was at the intersection of all 3 lobes in my right lung. After discussing it with my oncologist and surgeon, I was scheduled for a pneumonectomy (using VATs). The deal was if they found that the cancer had spread they would just take samples for biopsy then pull out. If they found that the cancer was confined to that one area they would just remove the lung. So, once they discovered the nodule in my pericardium they backed off and just took tissue samples for biopsy. The surgery left a bit of a mess (not blaming -- just how it works) so it's been hard to figure out what's there. My scans have consistently shown no change in the size or density of the area in question and none of the nodules they can see are any different. Everything else (bloods, lung function) is normal to better than normal. I was initially a little frustrated with the "no change" results, but after speaking with my oncologist and the radiologists who have read my scans, we have decided that what we are really seeing is mostly the scar tissue from the surgery. I have looked at every one of my scans multiple times and have been given the opportunity to ask questions of the radiologists directly. I am now comfortable that while I may not have the luxury of a "surgical cure" I am in an excellent place health wise.
  6. 1 point
    LUNGevityKristin

    Hope Summit, Washington DC

    Yes, there will be a free virtual event this year and more details are coming soon. I will post all of the information as soon as registration is open!
  7. 1 point
    BridgetO

    Hope Summit, Washington DC

    Hi Karein, There will be some internet based virtual events this year the weekend beginning August 2. Details haven't been announced yet. Keep in touch on these forums and on the main Lungevity site lungevity.org . I expect we'll hear something soon. There will probably be an in-person event in August 2021, coronavirus permtting. Bridget O
  8. 1 point
    snowmom

    Keytruda

    Thanks to all who replied. I apologize for the slowness of my response - but it's been a very busy time with lots of good stuff! I continue to do well and will have my 35th Keytruda maintenance infusion on August 5. I've not yet discussed a follow-up program (frequency of scans/blood work etc.) with my doc as I've been seeing the Nurse Practitioners lately. As soon as I have more information I'll let you know. Rose - I hope you are doing well. I started on Alimta + Keytruda after I finished 6 or 7 (can't remember) rounds of Carboplatin + Alimta + Keytruda. Oddly oddly enough the dual therapy had more side effects for me than the triple so we agreed to drop the Alimta and I have continued just fine without it. I do have a question for you, In your post you mentioned that you were going to discuss your ongoing therapy with your doc - what did he/she say? Sashjo - I hope you are doing well. Yes, I was nervous at first, since I know I can never claim a cure because of the nodule on my pericardium, but I'm over it. It was good for me to have some time to live with the idea and discuss it with my doc. I know I will watch myself closely and that I will have a good monitoring regimen in place. Another positive is that, if it becomes necessary, I can go back on Keytruda. Other therapies would also be available to me. Claudia - Glad to hear you are doing well!
  9. 1 point
    Rower Michelle

    Terrified newbie

    One step closer to getting control of this situation. Try and get some rest tonight. You will start to feel better as the trial plan takes hold. Hold onto your confidence.
  10. 1 point
    Lin wilki

    Terrified newbie

    🤞 Good luck
  11. 1 point
  12. 1 point
    Everything you're feeling is so normal ChiMama so be at peace that you are going to make this and it will be easier than the colon surgery. As far as lung capacity exercise I would do fast walking for a good 5 minutes until I was breathless then do slower walking for about 10 minutes and then back to the fast walking. It really helped me along with the spirometer, which I used 3-4 times an hour and I'd set my goals to get that darned thing right to the top...but you set a goal that will challenge you and help you improve your capacity. It sounds like you're doing a lot of good things for yourself so please continue with them. You'll be happy later that you did. Lou
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