Overwhelmed – mucosal melanoma options
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.

Overwhelmed – mucosal melanoma options

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

  • 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

     

Viewing 2 reply threads
  • Replies
      • 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

Viewing 2 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