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Still NED (Stage IIIb since 2009, untreated)
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Still NED (Stage IIIb since 2009, untreated)

› Forums › General Melanoma Community › Still NED (Stage IIIb since 2009, untreated)

  • Post
    • February 27, 2020 at 7:41 am
    swissie
    Participant
      Very positive story

      My history: 1992 first melanoma (thrick but I don’t know the details)
      2008 second melanoma (1.1 mm)
      SLN showed something, the doctors were not sure if it was melanoma or a normal naevi, they decided it was normal.

      2009 spread to the lymph nodes (with spreading in surrounding fat tissue).
      2009, Participated in a double-blind trial with 10 mg/kg ipi, however I was in the placebo group.
      So basically, I am an untreated Stage IIIb patient without recurrences.

      Since that time I never got any recurrence or new primaries.
      I had a couple of scares (I still hate waiting) but all results came back clear.
      The last scan was in 2016 (as final part of the trial).

      Currently I only have my yearly skin review.
      I try to enjoy life as much as I can. I try to be positive and surround myself with positive people. If someone drains my energy, I tend to only meet that person when I really need to. Or I meet a good friend afterwards to give me back my energy.

      Stay positive!
      Sabine

    Viewing 4 reply threads
    • Replies
        • February 28, 2020 at 3:54 am
        sandyd77
        Participant
          Thank you for your message. It gives me hope for my husband! Stay well!
          • February 28, 2020 at 3:54 am
          sandyd77
          Participant
            Thank you for your message. It gives me hope for my husband! Stay well!
            • February 28, 2020 at 4:13 am
            SABKLYN
            Participant
              Awesome indeed!
              • February 28, 2020 at 1:28 pm
              tkoss
              Participant
                did anyone ever or ever try to explain why you cancer went away? SABKIN posted about a 5 year remission after LN removed, but didn’ t say if they received any drug therapy.

                I was wondering about stage 3 folks who found cancer in LN but didn’t develop further cancer. in my case after a stage 1 mole, they found a stage 3c moles(moved into lymph nodes) and now found another pre-cancerous mole. I am on nivo only. so I am wondering if it is really simply an issue of excising mole before it moves into the lymphatic system to be enough preventative therapy.

                  • February 29, 2020 at 10:32 pm
                  SABKLYN
                  Participant
                    Hi T
                    I had no other therapies aside from a Phase I clinical study involving modification of dendritic cells that were harvested and injected back into me 6 times over a 12 week period. Nothing was available at that time other than interferon, which I declined to take after reading about the general lack of efficacy of that therapy. I don’t know why specifically I had no recurrence to date. A 3a diagnosis has a fairly high 5 year survival rate (north of 65%) and a ten year survival rate fairly close to that. I have to assume I just (so far) have fallen into the right side of the survivability equation.
                    • February 29, 2020 at 10:35 pm
                    SABKLYN
                    Participant
                      Here are the details of the clinical trial
                      https://clinicaltrials.gov/ct2/show/NCT01456104.
                    • March 1, 2020 at 6:08 pm
                    SOLE
                    Participant
                      My heartfelt congratulations. This is no small feat. Your story is inspiring. Keep living large as Bubbles would say!
                      M
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