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Looking for Mucosal Melanoma Survivor
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Looking for Mucosal Melanoma Survivor

› Forums › Mucosal Melanoma Community › Looking for Mucosal Melanoma Survivor

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    • July 5, 2017 at 2:35 am
    kitenearsink
    Participant

      Greetings-

      My mother was diagnosed with rectal mucosal melanoma in March of this year. We are looking for a survivor for her to connect with by phone or email to talk about their experience but this rare and aggressive cancer has made it difficult to find any current local patients. If anyone has been treated for MM, and would be willing to speak with her, we would be so very grateful.

      Thank you.

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    • Replies
        • July 5, 2017 at 4:39 pm
        Cindyco
        Participant

          Hi, Teodora is right that this cancer is extremely different from cutaneous.  Feel free to message me directly as well.  My mom is currently Stage IV and starting a clinical trial (IMCGP100) tomorrow.  Unfortunately for us, there are no standard of care options that are available for her right now.  There is actually a facebook group that I'm part of for mucosal melanoma patients that has a lot more people she can talk to as well depending on her stage, treatment plan, experience:

          https://www.facebook.com/groups/906485416088740

            • July 8, 2017 at 4:35 am
            msdayton
            Participant

              I was diagnosed with malignant mucosal melanoma January 2016.  I had a tumor on the dante line just at the rectal canal.  It was removed surgically with adjuvant radiotherapy for 3 weeks.  I had lost a kidney the year before so I did not qualify for any trials.  I was only watch and wait.  So after a year and 4 months of clear scans, one came back with a lymph node positive for melanoma..  Now I am on the same ride many are with immunnotherapy using Yervoy and Opdivo combo for 4 weeks.  It is still a wait and see ezperience because you never know what they might find in your next scan.  the good things is that I feel fairly good.  I still believe God has this and will take me home when he is ready to.  I just completed my first Yervoy/Opdivo dose…  No big side effects yet.. They say those come after the four treatments.

              • January 4, 2018 at 2:38 am
              Frillie
              Participant

                Hi, I got the same diagnosis, MMM, May 2016. Had wide excision surgery and lymph node biopsy July 2016 and radiation Sept 2016. In Spring 2017 recurrant rectal bleeding began and was "watched" over the summer. Sept. 8, 2017 it was decided I shuld get another colonoscopy to determine where the bleeding was coming from. When I awoke from the colonoscopy, I was told he (doctor) had to repair radiation damage with ablation. Very poor pain management and after care. Two and a half months of torturous pain on my sofa including a trip to the emergency room. Now 4 months later, pain is better and I'm still bleeding. Going to original surgeon for sigmoidoscopy again to figure out the bleeding. Also have two suspicious spots on my liver. How are you doing now? How did the Yervoy/Opdivo work for you?  Sending love.

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