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Judy M2

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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. 

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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?  

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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! 

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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

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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!  

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