Judy M2 Posted February 9, 2022 Share Posted February 9, 2022 I had my regular 3-month PET/CT scan last week and yesterday I saw an oncologist for the results. (My oncologist is currently out of the office.) I'm still NED (No Evidence of Disease) since April 2021. Since we have so many new members, here is my background: diagnosed in October 2019 with Stage IIIB EGFR+ adenocarcinoma. I had 6x chemo (carboplatin and taxol) and 30x fractional chest radiation. Afterwards I started Tagrisso in March 2020 and will continue to take it indefinitely. Many people are curious about supplements. That's a personal choice and should be approved by your doctor(s). I don't follow any special diet but I do have to watch sugar and carbs for blood sugar reasons. The supplements I take are recommended by my primary doctor to treat specific conditions: calcium and vitamin D3 (for osteopenia), vitamin B12, biotin (for hair and nails) and melatonin (for sleep). I take a daily Claritin for allergies and a statin drug. For exercise, I walk my dogs an hour every day. I hope this post can give some of you hope as you begin your journeys. Best wishes to all. ChiMama, Lisa Haines, WalkingHorse and 6 others 9 Quote Link to comment Share on other sites More sharing options...
LouT Posted February 9, 2022 Share Posted February 9, 2022 Judy, What great news! NED is wonderful and you deserve it. Enjoy the day, celebrate and live it fully. Lou judyb75 and Judy M2 1 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 9, 2022 Share Posted February 9, 2022 Judy, NED rocks! Stay the course. Tom judyb75, Judy M2 and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 9, 2022 Share Posted February 9, 2022 NED! Great news! Karen LouT, Tom Galli, Judy M2 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Scruboak Posted February 9, 2022 Share Posted February 9, 2022 Yay! judyb75, Tom Galli, Judy M2 and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
hillham Posted February 10, 2022 Share Posted February 10, 2022 That's so great Judy! I'm very happy for you, and believe you'll stay NED for a LONG time. Question for you - Did you begin the targeted therapy right after finishing chemo/radiation? When I was diagnosed 3B adenocarcinoma, but with the Ros-1 fusion, the plan was for me to take targeted therapy immediately afterward, and also indefinitely. However, since I felt so many negative side effects from the targeted therapy, my oncologist told me to stop taking it after only a week. I haven't been on any treatment since(fingers crossed a thousand times). I've wondered if it was all just too much to begin the targeted therapy after having gone through the chemo/radiation, but I have no idea how I'll do if I have to take it in the future. Maybe this is an impossible question, but do you think you're NED because of the chemo/radiation or the Tagrisso? judyb75, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted February 10, 2022 Author Share Posted February 10, 2022 Thanks everyone. Hillham, your question is one that I sometimes ask myself. So I've eventually come to the conclusion that chemo and radiation killed the cancer cells. I started Tagrisso 2 months after treatments ended (because I needed emergency abdominal surgery after treatments ended and had to recover first). My oncologist didn't want to wait too much longer. I still don't really know for sure. But remember, if you ever have progression, they'll probably want to retest for a different mutation. Hope you also stay NED for a long time! LouT and judyb75 2 Quote Link to comment Share on other sites More sharing options...
hillham Posted February 10, 2022 Share Posted February 10, 2022 Ah, interesting. I'm guessing there are a lot of people taking TKIs/targeted drugs who are asking themselves the same thing. But who wants to take the risk of stopping the drug? If the Ros-1 returns, I hope I can take one of the drugs then, and that it will work. I guess I didn't think about the fact that progression could be a different mutation. Ugh. Cancer sucks! I hope NED continues for all of us! Karen judyb75, LouT and Judy M2 3 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted February 11, 2022 Share Posted February 11, 2022 Congratulations! judyb75, Judy M2 and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
Robert A. Posted February 11, 2022 Share Posted February 11, 2022 That's great. Happy for you. LouT, judyb75 and Judy M2 2 1 Quote Link to comment Share on other sites More sharing options...
judyb75 Posted February 11, 2022 Share Posted February 11, 2022 Always awesome news, CONGRATULATIONS Judy M2, and may your news continue to be good for many years to come!! Judy M2 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 12, 2022 Share Posted February 12, 2022 Ringing in the happiness a little late here, Judy, very thrilled for the good scans. I think you’ve got the best approach on how to manage the scan process and I admire you for that and many other things! Judy M2, judyb75 and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
Lisa Haines Posted February 13, 2022 Share Posted February 13, 2022 Stable and NED are Always the best new we can hear! I'm very happy for you!! LouT, Judy M2 and judyb75 2 1 Quote Link to comment Share on other sites More sharing options...
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