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No vitiligo?
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No vitiligo?

› Forums › General Melanoma Community › No vitiligo?

  • Post
    • January 16, 2023 at 4:11 pm
    YoJa
    Participant
      I’ve read that vitiligo indicates a good prognosis for people treated with immunotherapy. But has anyone become NED without vitiligo? Or has anyone experienced vitiligo late in their treatment?
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    • Replies
        • January 16, 2023 at 8:54 pm
        JudiAU
        Participant
          Vitiligo is thought to be a good sign but no, most people who are doing well on immunotherapy do not get it. Side effects do pop up late and after immunotherapy is complete but no I for one don’t have it.
          • January 17, 2023 at 2:07 am
          Lyfechemist
          Participant
            Vitiligo is a condition in which there is loss of pigmentation, or color, in certain areas of the skin. This results in white patches or spots on the skin. The exact cause of vitiligo is not known, but it is thought to be an autoimmune disorder in which the body’s immune system attacks and destroys the cells that make melanin, which provides pigment to our skin.

            Vitiligo can affect any part of the body, but it most commonly affects the face, hands, feet, arms, and legs. The condition can be unsightly and may cause emotional distress, but it is not contagious or life-threatening.

            Know How to cure Vitiligo in detail

            • January 18, 2023 at 1:25 pm
            Lucas
            Participant
              Immunotherapy vitiligo is much different than the definition given above. Most individuals who respond to immunotherapy whether partially or completely will not have vitiligo. I did however develop vitiligo late into treatment. I failed Pembrolizumab and after receiving the ipi/nivo combo the condition developed. My vitligo showed up all over my groin where I had tumors. Large random patches of my hair fell out and came back white. My Scars turned white and anywhere else I had tumors (Legs, Feet) also turned white. This condition is not something to count on, but something random that could happen, likely when you’re least expecting it. I had Stage 4 acral melanoma and did have a complete response after many failed drugs (Pembro, Single Nivo, T-VEC.)
              • January 19, 2023 at 8:19 pm
              OnJnAnT
              Participant
                I did not have any vitiligo during my 12-month adjuvant nivo treatment for stage 3a/b. After progressing a year after that initial 12 months in lung and groin, I started ipi/nivo every three weeks for 3 months. I did not respond initially (and was asymptomatic). However, two months after my last dose of the combo I developed vitiligo and some rheumatoid arthritis. My facial hair became patchy white, and I noticed some “halos” of unpigmented skin around moles on my arm. My lung tumor and groin lymph node disappeared.

                Unfortunately after about 4 months of this initial response, I progressed in the brain, as well as a few subcutaneous lesions and a lymph node. Currently I am on a TIL trial, but my beard is still white 🙂

                  • January 19, 2023 at 8:37 pm
                  YoJa
                  Participant
                    Praying that the TIL does the trick!
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