The Melanoma Hub – Home Forums Immunotherapy Side-effect management mucositis & mouth sores from Nivo

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    Expert Nurse
    Avatar photoKathleen Madden

      HI All,

      My patient has had 2 cycles of adjuvant Nivo with worsending mouth sores and generalized mucositis. It is moderate at this time, she can drink but only eating soft foods.
      I have managed quite a bit of xerstomia, and 1 case of mucositis which reversed rather quickly with supportive care. However, this patient has not responded to all supportive measures, prescription oral and oral rinse steroids. Gel clair is supporting symptoms modestly. We are going to try infliximab since this is technically a GI issue, the other consideration is mycophenolate.
      What have your experiences been? any advice or guidance?

      thank you in advance!! Happy Healthy Holidays!


      Expert Nurse
      Avatar photoKathleen Madden

        HI All,

        A quick update on my patient with mucositis, she received infliximab ab on 12/27, I received a fu call on 12/28 & she was already experiencing regression of swelling, sensitivity and pain. I will provided an additional update to provide time to sx resolution.

        Happy Healthy New Year to All!


        Expert Nurse
        Avatar photoSuzanne McGettigan

          Hi Kathy–
          Such an interesting case. My experience with xerostomia and mucositis has been similar to your prior experience. Generally it has resolved quickly with supportive care therapies, including salt water rinses, the Biotene products, GelClair, Muguard, or decadron mouth rinses. I have also had a patient where culturing one of their ulcers did indicate a herpetic infection and the addition of an antiviral therapy seemed to help. Good to know that infliximab is also effective in this refractory case.
          thanks for sharing,

          Expert Nurse
          Avatar photoKrista Rubin

            Wow. Thanks for sharing Kathy. I had one woman who had such severe xerostomia, and likely Sjogrens syndrome from treatment. She was miserable. Lost almost 30 lbs as she could not eat, tongue was sore all the time, sho she had trouble drinking. I was worried about aspiration. A formal speech and swallow eval was helpful; she did not appear to be aspirating, and the SLP was able to provide some recommendations for food/beverage choices. All in all, she decided to end treatment due to misery. Luckily she experienced a dramatic regression of tumor (she had unresectable, bulky Stage III disease of the groin) within the 1st 6 months of treatment, therefore it was a little bit easier to support her decision to stop. It has been 18 months and she has not experienced recurrent disease (knock on wood). Unfortunately, she continues to have Sjogrens sx., but has adapted as best as she could.

            For other patients, I have found dex mouthwash helpful, and I give a once weekly flucanazole to minimize risk of thrush.

            Xerostomia is a big issue- most of the time, patients just deal with it; they hate it!

            Expert Nurse
            Avatar photoKathleen Madden

              Thanks for sharing your experiences, we don’t yet have full resolution, but the pt has returned to her normal life style and eating/ drinking normally & finds this little bit of residual tolerable. Fortunately, this was in an adjuvant setting, Krista glad to hear that your pt who was unresectable still received benefit off therapy. Sjogren’s can be a challenge but there are management strategies, noentheless still a challenge.

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