Leo Posted August 7, 2018 Share Posted August 7, 2018 Happy to share that my second round of surveillance testing shows no evidence of disease, no nodules (new or old), no densities (new or old) and no other findings requiring particular short term monitoring. I am now 6 months NED. This result was particularly good news as in mid May, I experienced a period of extreme fatigue, headaches, balance issues and nausea. I was literally fine one day and in a very bad way a day later. I was given a full round of tests and scans ( including check for pulmonary embolisms) and IV infusion of nausea medications. Consensus was pneumonitis and general inflammation. With the help of prednisone , a lot of sleep and time to heal, this situation resolved over a 4 week period and I have now had the best set of scans since my diagnosis. I’m back to my full gym/exercise regimen and went to a family reunion in Canada (1st time my family (siblings, cousins, nieces and nephews) has seen me since my diagnosis. Now I’m looking forward to a trip to Disney with my family and a chance to get back to living a bit more. For reference I was diagnosed with Limited Stage SCLC 10/31, 2017 and achieved NED in late January 2018 following Chemoradiotherapy. Link to comment Share on other sites More sharing options...
LexieCat Posted August 7, 2018 Share Posted August 7, 2018 Leo, that's AWESOME news!! So happy for you! Keep those NEDs coming! Hope you have a wonderful trip to Disney--never too old to enjoy that place. Link to comment Share on other sites More sharing options...
BridgetO Posted August 7, 2018 Share Posted August 7, 2018 Yep, really awesome news! Love to hear about those NEDs. Link to comment Share on other sites More sharing options...
Tom Galli Posted August 7, 2018 Share Posted August 7, 2018 Leo, Go NED go! One caution however, if flying, I'd wear a surgical mask to avoid catching something on the plane to Disney. We travel a lot and I've picked up many illnesses that end up in my chest. Then I'm down for the count during vacation. I just returned from a two week Baltic Sea cruise and wore a surgical mask both legs of the flight to and from the cruise ship. And, I am fine. So I'll mask up from now on. Celebrate NED and stay the course. Tom Link to comment Share on other sites More sharing options...
Steff Posted August 7, 2018 Share Posted August 7, 2018 Congrats Leo, have fun in Disney!!! Link to comment Share on other sites More sharing options...
LaurenH Posted August 7, 2018 Share Posted August 7, 2018 Congratulations, Leo! That is great news! In addition to Tom's suggestions, here is a link to a Travel Checklist with some recommendations for your trip: https://lungevity.org/for-patients-caregivers/asking-right-questions/checklists We hope you have a wonderful time in Disney! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
BridgetO Posted August 7, 2018 Share Posted August 7, 2018 Here's another travel suggestion. I tend to catch colds on airline trips. Recently I've started carrying disinfecting wipes and as soon as I get to my seat i wipe down the armrests, tray table and the parts of the back of the seat in front of me that I'm likely to touch. Last few flights, no colda! Bridget O Link to comment Share on other sites More sharing options...
Leo Posted August 8, 2018 Author Share Posted August 8, 2018 Thanks for travel recommendations all ..good advice, and much appreciated ! Link to comment Share on other sites More sharing options...
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