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Itching before IPI/Nivo
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Itching before IPI/Nivo

› Forums › General Melanoma Community › Itching before IPI/Nivo

  • Post
    • June 7, 2015 at 1:09 am
    273c
    Participant

      My husband had surgery (lymph node tumor and one between liver and kidney) last week so at the moment he is NED.  We are waiting on pathology and some recovery from the surgery before we head down the path of IPI, ipi/Nivo or maybe just Nivo.   

       

      So here is the wildcard, my husband has been itching for months.  He also has several patches of vitiligo.  Itching to the point of a precription antihistamine.  The day after his tumors were removed the itching stopped but by day four after surgery it has started up again although not nearly as bad. 

       

      Anyone have itching caused by the melanoma?  Anyone else with pre-immunotherapy itching? What happens when you add in an immunotherapy that then causes itching?  How do you tell if the immunotherapy is working if there are no tumors and you are already have itching/vitiligo? 

       

      Thanks,

      Kathy

    Viewing 5 reply threads
    • Replies
        • June 7, 2015 at 1:59 am
        mrsaxde
        Participant

          What does the doctor think the itching is coming from? I've never heard of itching caused by melanoma.

            • June 7, 2015 at 2:13 am
            273c
            Participant

              The docs are scratching their heads.  The dermatologist who saw him on day 2 when there was no itching said that sometimes when tumors (general, not specifically melanoma) are removed the itching resolves.  They seem to think it is an immune response, like an allergic reaction. 

              • June 7, 2015 at 2:13 am
              273c
              Participant

                The docs are scratching their heads.  The dermatologist who saw him on day 2 when there was no itching said that sometimes when tumors (general, not specifically melanoma) are removed the itching resolves.  They seem to think it is an immune response, like an allergic reaction. 

                • June 7, 2015 at 2:13 am
                273c
                Participant

                  The docs are scratching their heads.  The dermatologist who saw him on day 2 when there was no itching said that sometimes when tumors (general, not specifically melanoma) are removed the itching resolves.  They seem to think it is an immune response, like an allergic reaction. 

                • June 7, 2015 at 1:59 am
                mrsaxde
                Participant

                  What does the doctor think the itching is coming from? I've never heard of itching caused by melanoma.

                  • June 7, 2015 at 1:59 am
                  mrsaxde
                  Participant

                    What does the doctor think the itching is coming from? I've never heard of itching caused by melanoma.

                    • June 7, 2015 at 1:12 pm
                    Bubbles
                    Participant

                      Kathy,

                      Sorry for your husband's situation, but simulataneous congrats on being NED and developing vitiligo! A relatively rare group of folks with melanoma do mount their own immune response to melanoma and vitiligo can be a sign of that and is a good prognostic sign generally. I did not experience this phenomenon personally, but I did develop itching and vitilitgo with Nivo and often the location were the same….itching followed by vitiligo in that area.  And while we know that vitiligo is associated with a much better response…not all folks on immunotherapies develop rash or vitiligo yet still go on to do very well without that particular effect. Telling whether an NED person is having a response to immunotherapy (or any other therapy for that matter) is rather difficult. You can see my comment below on anon's thread about SNLD/adjuvant therapy. However, mounting an attack while you have the least disease burden possible makes sense to me. Wishing you and your husband my best.  Celeste

                      • June 7, 2015 at 1:12 pm
                      Bubbles
                      Participant

                        Kathy,

                        Sorry for your husband's situation, but simulataneous congrats on being NED and developing vitiligo! A relatively rare group of folks with melanoma do mount their own immune response to melanoma and vitiligo can be a sign of that and is a good prognostic sign generally. I did not experience this phenomenon personally, but I did develop itching and vitilitgo with Nivo and often the location were the same….itching followed by vitiligo in that area.  And while we know that vitiligo is associated with a much better response…not all folks on immunotherapies develop rash or vitiligo yet still go on to do very well without that particular effect. Telling whether an NED person is having a response to immunotherapy (or any other therapy for that matter) is rather difficult. You can see my comment below on anon's thread about SNLD/adjuvant therapy. However, mounting an attack while you have the least disease burden possible makes sense to me. Wishing you and your husband my best.  Celeste

                        • June 7, 2015 at 1:12 pm
                        Bubbles
                        Participant

                          Kathy,

                          Sorry for your husband's situation, but simulataneous congrats on being NED and developing vitiligo! A relatively rare group of folks with melanoma do mount their own immune response to melanoma and vitiligo can be a sign of that and is a good prognostic sign generally. I did not experience this phenomenon personally, but I did develop itching and vitilitgo with Nivo and often the location were the same….itching followed by vitiligo in that area.  And while we know that vitiligo is associated with a much better response…not all folks on immunotherapies develop rash or vitiligo yet still go on to do very well without that particular effect. Telling whether an NED person is having a response to immunotherapy (or any other therapy for that matter) is rather difficult. You can see my comment below on anon's thread about SNLD/adjuvant therapy. However, mounting an attack while you have the least disease burden possible makes sense to me. Wishing you and your husband my best.  Celeste

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