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PET scan shows NED
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PET scan shows NED

› Forums › General Melanoma Community › PET scan shows NED

  • Post
    • December 11, 2019 at 6:37 pm
    Edwin
    Participant
      I had a PET scan on Wednesday December 4 and received Opdivo immunotherapy today.

      From the PET scan report:
      “IMPRESSION:
      1. The whole-body disposition FDG is physiologic.
      2. Previous study showed mild activity in left parapharyngeal lymph node. This has normalized.”

      “Physiologic” means normal [NED].

      PET scan SUV maximum of lymph node under my left jaw.
      3.7 2018 April
      4.2 2018 September
      4.0 2018 December
      3.2 2019 March
      2.6 2019 July
      2.0 2019 December ( “activity at background levels” )

      The increased activity under my left law in September 2018 could have been disease progression. I skipped two 240 mg infusions of Opdivo, so I could have cataract surgery in both eyes in August 2018. The increased activity could have been pseudo-progression due to healing after radiation. I received radiation to that area under my left jaw in April and May 2018. Since the activity has decreased, I assume the increase to SUV 4.2 was pseudo-progression.

      Dr. Anu Gaba has been my oncologist since September 2014. I have been receiving immunotherapy since November 2015. In March 2016 I had melanoma in several bones. Pembro immunotherapy had failed. I began ipi + nivo immunotherapy on April 1, 2016. My bone cancer disappeared. Then a tumor appeared under my left jaw. Dr. Gaba plans to stop immunotherapy in May. She bases her plan on recommendations of Dr. Jeffrey Weber.

    Viewing 10 reply threads
    • Replies
        • December 11, 2019 at 7:07 pm
        gopher38
        Participant
          That is really fantastic.
          • December 11, 2019 at 8:02 pm
          sister of patient
          Participant
            That is fabulous news – so pleased for you Edwin!! Thank you for sharing it and wishing you the best, always!!!

            Barb

            • December 11, 2019 at 9:24 pm
            Coragirl
            Participant
              I am so happy for you! Wonderful news.
              • December 11, 2019 at 9:43 pm
              sing123
              Participant
                Great news, Edwin!
                • December 12, 2019 at 5:57 am
                lkb
                Participant
                  Thanks for posting this wonderful news! Does “activity at background levels” mean the tumor is necrotic? Or so small as to be undetectable?
                  Lisa
                    • December 12, 2019 at 7:31 pm
                    Edwin
                    Participant
                      The tumor had a hollow center, before the radiation to it. After the radiation, activity shown in PET scans spread out around where the lymph node had been. Hopefully, the radiation made the tumor necrotic.
                      • December 13, 2019 at 6:18 am
                      lkb
                      Participant
                        Hollow center–amazing they can learn that! Can you still feel this tumor? Is it still there, but necrotic? Or are both node and tumor simply no longer there?
                        Thanks,
                        Lisa
                        • December 13, 2019 at 2:20 pm
                        Edwin
                        Participant
                          An MRI of my neck on May 3, 2018 found “Focus of hypermetabolism from recent PET CT likely corresponds with a 5.5 mm centrally necrotic lesion”. I did not notice this lymph node, which was near the site of the SLNB and CLND in my neck. I occasionally have a little neck pain which I attribute to the surgery.
                          • December 15, 2019 at 1:53 am
                          lkb
                          Participant
                            Thanks, for responding, Edwin!
                          • December 12, 2019 at 8:20 am
                          MelMel
                          Participant
                            Wonderful news! I guess Santa came early. Thank you for sharing and posting activity levels with dates.
                            Melanie
                            • December 12, 2019 at 1:47 pm
                            Bubbles
                            Participant
                              You are awesome, Edwin!!! That is wonderful!! You and your onc’s plan (and the research/researcher upon which it is based) sounds excellent! Keep on running! love, celeste
                              • December 12, 2019 at 7:41 pm
                              GeoTony
                              Participant
                                superb news, Santa did come early
                                • December 13, 2019 at 7:28 pm
                                sks2019
                                Participant
                                  so happy for you Ed, Wish you continued health and NED status.
                                  • December 14, 2019 at 1:17 am
                                  DoubleTT
                                  Participant
                                    Very happy for you Edwin!!! Are you NRAS?
                                    Tracey from Toronto…..ps. I am scared being NRAS my metastasis will spread again from my vertebrae t12 to other bones. Did one year Opdivo as adjuvant after they blew up my t12. So hearing you are successful on ipi and Opdivo for your bone metastasis is good to my ears …meaning if I metastasize again there’s something I can try. I am sending more positive vibes out into the universe for everyone on here..tt keep up your great work Edwin.!!!
                                      • December 14, 2019 at 6:29 pm
                                      Edwin
                                      Participant
                                        My melanoma is negative for BRAF and for c-kit. I do not know my NRAF status.
                                      • December 23, 2019 at 12:37 am
                                      mrhubahuba
                                      Participant
                                        That’s a great success story! Love to hear good news. May we all get the same results.
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