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Vitiligo question

Forums General Melanoma Community Vitiligo question

  • Post
    Tracyyy
    Participant
      Vitiligo is associated with long term response to immunotherapy, but do all long term survivirs have vitiligo? Does it mean immunotherapy won’t work for me as I am on Keytruda for a year but no vitiligo yet? Sorry if my question seems stupid
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        ed williams
        Participant

          Hi Anon, not a stupid question, the topic comes up from time to time. I have Vitiligo on my hands, arms and legs and I have also been lucky enough to have a long term response to Nivo. From what I have read there is a strong correlation to response if you develop vitiligo but like those who have Pd-L1 + staining with your tumor which usually predicts higher response level, but many who don't have Pd-L1+ do respond to immunotherapy drugs, so not a strong biomarker or useful biomarker to screen who should get immunotherapy treatment. Vitiligo, is association with reponse but I have also followed those who had vitiligo and have died of this shitty disease. Here is an article from a couple of years ago that attempts to answer your question in more detail. https://www.curetoday.com/publications/cure/2016/melanoma-2016/connecting-the-dots-vitiligo-can-predict-immunotherapy-response-in-melanoma

          Edwin
          Participant

            I have been receiving immunotherapy for 3 years and have never had vitiligo.   I received Keytruda, then Yervoy + Opdivo, then Opdivo.   I have much less melanoma now than I had 3 years ago.

            Patrisa
            Participant

              Dear anon,

              there are no stupid questions, the disease is scary and every little reassurance helps.

              My father has been on keytruda for three years and in the first year there was no sign of vitiligo… i was worried because i hoped for white patches all over due to the belief that it is a good indicator that the juice is working… in the second year he developed some minor vitiligo on his face, no white hair and it also seemed to diminish in time… 

              he has been ned for 2,5 years so in our case,  no vitiligo? So what, it worked without it :-))

              Take care,

              patrisa

              lkb
              Participant

                After six cycles of Nivo, my eyelashes are turning white. I have, however, had progression during that time (but also nothing spreading to the lungs or liver). I remain hopeful, but the association has been inconclusive for me. Keep asking questions. Thanks for posting.

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