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Overwhelmed – mucosal melanoma options
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Overwhelmed – mucosal melanoma options

› Forums › Mucosal Melanoma Community › Overwhelmed – mucosal melanoma options

  • This topic has 8 replies, 5 voices, and was last updated 7 years ago by RTP.
  • Post
    • November 22, 2017 at 7:21 pm
    Lori Ann
    Participant

      Hi All.  I was diagnosed in January, 2015 with mucosal melanoma in the nasal passage.  Since then, I have done 6 weeks of radiation therapy, then had 7 surgeries to remove tumors; I've done Yervoy, then Keytruda.  I had one tumor shrink on Keytruda, then no response.  I just finished 3 rounds of chemo (carboplatin and paclitaxel).  The tumors have grown and spread. 

      I treat at Rush Univ. Medical Center in Chicago.  We went to Mayo Clinic this summer for a second opinion and they confirmed that everything we have done so far is pretty much standard procedure.  Is Rush a good option?  We live in Northwest Indiana.

      We are trying to decide whether to do a Phase 1 study of SEA-CD40 with/without Pembrolizumab (keytruda) or try different chemo drugs (abraxane and Avastin).

      Does anyone have any insight?  I am OVERWHELMED.  Thank you.

      LORI

       

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        • November 23, 2017 at 1:08 am
        Bubbles
        Participant

          This link was recently posted by Cindy on this forum:  http://www.cancernetwork.com/melanoma/mucosal-melanoma-new-insights-and-therapeutic-options-unique-and-aggressive-disease  

          Perhaps that might give you some info you didn't already have.  I will be putting up a post regarding a study with CD40 on my blog tomorrow…though I am not sure that it is exactly what you are considering as it was used as an intralesional therapy in the study my report will address.

          I wish you my best.  Celeste

            • November 23, 2017 at 3:58 am
            Lori Ann
            Participant

              This must not be the same thing as this is a phase 1 study?  I'll look at it when you post.  Thanks.

            • November 23, 2017 at 3:35 am
            CHD
            Participant

              Hi Lori,

              I have vulvar mucosal melanoma, in remission now for about 3 years.  Just wanted to mention there is a Facebook group called Mucosal Melanoma Warriors that you might want to look into.  It has been around about 2 years and lots of good insight there!

              Best wishes to you!!

              Cheri

                • November 23, 2017 at 3:57 am
                Lori Ann
                Participant

                  Thank you.

                  • November 23, 2017 at 3:59 am
                  Lori Ann
                  Participant

                    Congrats on your 3 year remission!!!!

                  • November 23, 2017 at 1:14 pm
                  Jahendry12
                  Participant

                    Hi Lori Ann. Just wanted to let you know my husband is being treated at the University of Chicago by Dr Jason Luke. He is excellent if you were looking for another opinion. 

                      • November 24, 2017 at 10:07 pm
                      Lori Ann
                      Participant

                        Thank you.  I met with Dr Luke about a year ago.  We weren't able to go to him because of insurance.

                        • January 5, 2018 at 8:11 pm
                        RTP
                        Participant

                          Hi Lori Ann,

                          Just read through these notes. Can you provide an update? My wife was diagnosed with Nasal MM early 2017. We caught it early. Had the tumor removed, margins cleared. Then as preventive, she had 30 rounds of IMRT and 4 rounds of cisplatum/temador. Treatment was at MD Anderson in Houston. We live in SC. She is currently NED, hoping for some reconstructive surgery to fix surgery/radiation damage of nasal cavity.

                          Hoping for good news from you.

                          RP

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