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Recurrence but never really gone unfortunately
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Recurrence but never really gone unfortunately

› Forums › General Melanoma Community › Recurrence but never really gone unfortunately

  • Post
    • March 4, 2018 at 4:29 am
    Brittany1999
    Participant

      Hi! I’ve read occasionally over the past 9 months but primarily been buried at work and feeling like melanoma was in my rearview mirror. I had an extensive surgery in Feb 2017 (followed by 3 Ipi and the 8 Pembro) with scans every 3 months since. But I just had a scan which showed tumors in my parotid, neck nodes, and lymph nodes behind my ear. It turns out the tumors in my parotid and behind ear have been there all along but only identified by radiology now. So they have been stable all along (I had an unknown primary and I think that’s why they didn’t know where to look).  Now getting a parotidectomy and removing the nodes behind my ear in the same surgery (not doing anything about the neck nodes because they are sub centimeter).

      I guess what I’m sayin is that I’m back and look forward to helping others who may experience an unknown primary.

      Deena

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    • Replies
        • March 4, 2018 at 6:19 pm
        TexMelanomex
        Participant

          Hi Deena! Im sorry youre back here. Did you stop Pembro after only 8 rounds or have you been on it consistently? I'm about to have my 8th round but as far as I can tell the plan for me is to stay on it for up to 2 years even if NED is achieved (as long as I can tolerate it that long). Did you have good results with the Pembro before stopping? I have read some pretty consistent results that if someone does well on it initially they can do well on it again… Hang tough and stay in the fight!

           

          • March 6, 2018 at 12:34 am
          Bubbles
          Participant

            Sorry about the upheaval.  But, in the end, it souds as though rather than recurrence you have been stable.  And, oddly, in melanoma world…stable is good.  Hang in there.  Celeste

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