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How is NED determined..?
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How is NED determined..?

› Forums › Cutaneous Melanoma Community › How is NED determined..?

  • Post
    • November 6, 2019 at 8:43 pm
    Yuki
    Participant
      Hi Warriors,

      May I ask, how do doctors determine if one is NED? Based on how many clean scans?

      My mom was diagnosed back in February with mucosal melanoma in her cervix. She had a hysterectomy and removed it. March scan was clean, however in her July scan it showed met to her liver, intestines, pelvic and her bones. She undergone 2 weeks of intensive radiotherapy for her liver met and full dosage of keytruda tri-weekly. Her scan in October was said to be “clean” however the tumor has not yet shrunk just pronounced “dead.” The doc currently suggests finishing 3 more rounds of keytruda and possibly stopping treatment after if her scans come out clean again…

      My question is typically how do the doctor determine NED? And how long after a “clean” scan do the doctor suggest stopping immunotherapy?

      I understand these are questions I should be asking our doctor however my mom is in Taiwan and Taiwan does not have a lot of knowledge regarding this type of cancer.
      Post-surgery, our doctor recommended no adjuvant therapy and was shocked to see that it had met in only 4 months… for this reason I am reaching out to others to see what is recommended for you/your loved ones.

      Really appreciate any feedback and support.

      Thank you.

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    • Replies
        • November 6, 2019 at 8:55 pm
        Yuki
        Participant
          One other question I had was, if it’s in the blood stream, which our doctor suspected was the case after the surgery are there any tests that can be done to test that?
          Thank you.
          • November 8, 2019 at 4:31 am
          Julie in SoCal
          Participant
            Hi Yuki,

            I’m not an expert, but I’ve figure that once you can’t find any disease anymore (via scans or blood tests or markers or whatever) you’re NED. I don’t think it takes multiple clear scans.

            As for when to stop keytruda, Bubbles has a helpful post about this topic here: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=when+to+stop.

            Wishing you and your mother peace. Shalom!
            Julie

              • November 8, 2019 at 6:50 pm
              Yuki
              Participant
                HI Julie,

                Ah thank you! I’ve been looking and researching everywhere to get some clue and have not come across anything. Now having read Bubbles post and watching Dr. Weber’s video, I realized I should I searched key words “discontinuing…” Thank you so much for the information!!!!!

                BR/Yuki
                [I’m not an expert, but I’ve figure that once you can’t find any disease anymore (via scans or blood tests or markers or whatever) you’re NED. I don’t think it takes multiple clear scans.] In response to this, my mom has only done 3 months of treatment so far and the scans are “clear” with tumor pronunced dead. Because everything is in mandarin, I am not sure if that is the same as no evidence of disease? Is there blood work that can be done in addition to PET/CT to further confirm no evidence of disease?

                BR/Yuki

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