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Tumoral melanosis ??? And side effects question ???

Forums General Melanoma Community Tumoral melanosis ??? And side effects question ???

  • Post
    SadLilly
    Participant
      Hi everyone ! I was diagnosed with melanoma on my back 1 year ago, had subcutaneous mets that were removed 6 months later and have been on adjuvant pembrolizumab for 4.5 months now with no signs f recurence. 3 days ago I noticed a skin lesion on my arm, close to one of my previous mets. It’s flat, around 3mm and it looks like a blue nevus. I immediately panicked and I am now scheduled for an evaluation in 2 weeks, probably another biopsy.

      In the meantime I searched the web as always, and I found that in patients who take pembro, a rare skin side effect has been observed, tumoral melanosis. Apparently it’s a focal phagocytosis of melanin by inflammatory cells which can look like a cutaneous met, and some of the cases I’ve found say that it often looks blue and flat. Has anyone known of anything like this ? Are cutaneous mets usually blue and flat ???

      Also during my treatment, I have experienced papular skin lesions, pruritus, lichenoid erosive oral mucositis and overt hypothyroidism. Are these side effects any indication of the efficacy of pembrolizumab ?

      Thank you very much for your replies and I wish everyone is healthy !

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        Bubbles
        Participant
          I am sorry for what you are dealing with, but glad you are scheduled for a biopsy. (Or at least potentially.) While I have read of patients with melanosis in the literature, the only way to know what you are dealing with is a biopsy. As to your other side effects, so sorry! I and many others on this forum have dealt with similar things when on either of the anti-PD-1 products – nivolumab or pembrolizumab. I had a terrible time with mucositis (which is not as common as some other side effects, but certainly happens often enough) as well as all sorts of itching and rashes. (There was also lots of wheezing, joint pain and fatigue.) Many here have also endured the development of hypothyroidism.

          On the positive side of these miserable side effects – I (and many others here) came through and remain NED. I was a Stage IV patient in 2010 post brain and lung mets, had 2 1/2 years of Nivo in a phase 1 clinical trial with my last dose in June of 2013 and remain NED for melanoma to this day. Further, there is this positive report that may interest you: Icky skin stuff = good? In relation to immunotherapy response for melanoma??

          Hope that helps. I wish you my best. Celeste

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