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    • July 6, 2017 at 9:07 pm
    Ingekk
    Participant
      Hi, I am 40 years old and live with my family in Norway. I found out in May that may melanoma from 15 years ago has come back. I have one large lymph on on my neck under my ear that is almost 3×3 cm large. PET scan shows no other activity. I am going to have a lymph gland removal on Wednesday. They are removing all lymph nodes, The muscle Sternokleido Mastroideus and everything else in the area. After this I am supposed to have radiation therapy for 6 weeks.
      Is this the way to go? I asked about this new therapies, but they told me that it is not for me as it has not spread further?
      I am really scared right now and crossing my finger that this surgery will make me NED.

      Inge Kristian

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        • July 6, 2017 at 11:15 pm
        Bubbles
        Participant

          Sorry you are dealing with this, Inge.  What is allowed or available in one country vs another certainly varies.  I think you probably will be NED after surgery.  However, with a recurrence like that it would certainly be wise to add immunotherapy to radiation.  For folks like you in the US, ipilimumab (Yervoy – an anti-CTLA4 agent) would be available.  However, it would probabably be even better if they could access anti-PD1 (either Nivolumab/Opdivo or Pembrolizumab/Keytruda or the Ipi/nivo combo), though currently these treatments are almost exclusively for Stage IV or Stage III patients with inoperable disease.  Apart from that, we have learned that radiation when combined with immunotherapy (as in ANY of the ones I've listed) works much better than either radiation or immunotherapy alone.  Here are zillions of reports:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy  

          So, you can only do the best you can.  Hope this helps.  Hang in there.  I wish you well.  Celeste

          • July 6, 2017 at 11:51 pm
          Jamie1960
          Participant

            I am very sorry to hear this (beyond uff dah); what was your follow up regimen after the original WLE ?

              • July 7, 2017 at 2:15 am
              Ingekk
              Participant
                My original WLE was about 4 cm from the lymph that now is huge. It was over 4mm thick and had spread to one lymph. I had a surgery to take out the closest lymph nodes around the mole. After that I had only palpation and they also watched over my moles every 6 months for 10 years. The last 5 years I guess I thought I was healthy and was told that the risk of getting it back was close to zero.
                I am thinking that if the cancer waits another 15 years to show itself I have a really good chance of beating this.
                • July 7, 2017 at 10:45 am
                Jamie1960
                Participant

                  Thank you for the additional information; I think you are right about the 15 year interval and the strength of your own immune system. I wish you the very best.

                • July 21, 2017 at 12:48 am
                Ingekk
                Participant

                  So I am back home from surgery. Still recovering, and my neck is looking like something from a Frankenstein movie. I dont mind it, but they removet a tooth from my lower back jaw, and that really hurts. GOing back next friday to hear what they found in the removed tissue. They told me that they could not se anything else than one large lymph when doing the surgery, so I guess that is good news. They still tell me thet the surgery are going to heal me, and they tell me that it will not likely come back again, as there is no evidence of any melanoma spreading trough the blood system. Still they recomend me to take radiation to be shure that any leftovers from surgery are taken care of. At this point there is no other treatment available for me as they think I should be free from melanoma after this surgerey. At the same time they also states, you never know for 100% with this diease.

                  Inge Kristian

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