The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Still NED (Stage IIIb since 2009, untreated)

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

  • This topic has 7 replies, 4 voices, and was last updated 4 years ago by SOLE.
  • Post
    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
        sandyd77
        Participant
          Thank you for your message. It gives me hope for my husband! Stay well!
          sandyd77
          Participant
            Thank you for your message. It gives me hope for my husband! Stay well!
            SABKLYN
            Participant
              Awesome indeed!
              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.

                  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.
                    SABKLYN
                    Participant
                      Here are the details of the clinical trial
                      https://clinicaltrials.gov/ct2/show/NCT01456104.
                    SOLE
                    Participant
                      My heartfelt congratulations. This is no small feat. Your story is inspiring. Keep living large as Bubbles would say!
                      M
                  Viewing 4 reply threads
                  • You must be logged in to reply to this topic.
                  About the MRF Patient Forum

                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                  The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                  Popular Topics