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PET scan shows NED

Forums General Melanoma Community PET scan shows NED

  • Post
    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.

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  • Replies
      gopher38
      Participant
      That is really fantastic.
      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

      Coragirl
      Participant
      I am so happy for you! Wonderful news.
      sing123
      Participant
      Great news, Edwin!
      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
        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.
        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
        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.
        lkb
        Participant
        Thanks, for responding, Edwin!
      MelMel
      Participant
      Wonderful news! I guess Santa came early. Thank you for sharing and posting activity levels with dates.
      Melanie
      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
      GeoTony
      Participant
      superb news, Santa did come early
      sks2019
      Participant
      so happy for you Ed, Wish you continued health and NED status.
      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.!!!
        Edwin
        Participant
        My melanoma is negative for BRAF and for c-kit. I do not know my NRAF status.
      mrhubahuba
      Participant
      That’s a great success story! Love to hear good news. May we all get the same results.
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