MRF-Logo2019-Horizontal-RGB
mucosal melanoma
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

mucosal melanoma

› Forums › Mucosal Melanoma Community › mucosal melanoma

  • Post
    • June 3, 2017 at 2:49 pm
    judyk
    Participant

      i was dx with naso/sinus mucosal melanoma 5 years ago i opted for surgery and radiation and more surgery to keep it at bay in my nose. now the PET shows 2 spots in my liver. i feel well but need to have a biopsy and then decide from there. i have been putting off immunotherapy since i dont have any of the markers and it is for skin melanoma. they dont have any specific treatment for mucosal other than use the immunotherpy for skin. recently, i am hearing that there is a 5 year survival rate for 20% of patients. hope that is true.  please let me know if you have mucosal and how you are doing. and what the treatment has been.

      thanks   jk

    Viewing 0 reply threads
    • Replies
        • June 3, 2017 at 6:43 pm
        foodie22
        Participant

          Hi Judy, 

          I also have mucosal. If you are on Facebook there is a private page where a lot of us talk about this sort of thing. "Mucosal melanoma warriors" 

          In short, I have no known mutations and still reaponded really well to combination immunotherapy/checkpoint inhibitors. 

          best of luck to you and let me know if you have more questions!

           

          jB 

            • June 4, 2017 at 11:49 am
            KG
            Participant

              Hi Judy,

              I also have mucosal and was recently diagnosed in January.  I had 3 immunotherapy treatments of the combined opdivo and yervoy.  We had to cancel the 4th due to the side effects.  I had my first PET scan in April since treatment started and there was no longer evidence of cancer.  The response to the treatment has been amazing.  I was on prednisone to treat the side effect for about 2 months, just got weaned off and this week started the single treatment of Opdivo.  The plan is to continue Opdivo treatment until the next PET scan and then reevaluate.

              Hope this helps.

              -kg

        Viewing 0 reply threads

        Tagged: 

        • You must be logged in to reply to this topic.
        About the MRF Patient Forum

        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

        Popular Topics