MRF-Logo2019-Horizontal-RGB
When do you decide to start targeted radiation therapy?
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.

When do you decide to start targeted radiation therapy?

› Forums › Mucosal Melanoma Community › When do you decide to start targeted radiation therapy?

  • Post
    • September 22, 2017 at 3:23 pm
    oconnorr
    Participant

      My dad was diagnosed with stage IV mucosal melanoma in April 2017. He had been receiving opvido immunotherapy weekly for 18 weeks, and this week he had an MRI. 

      There tumor in the maxillary sinus has shrunk, but the tumor in the frontal sinus remains stable, and they still don't feel it is resectable.  

      His oncologist is suggesting follow up with a radiation oncologist to explore that option, but cautioned that targeted radiation therapy is not always effective with mucosal melanoma. 

      I thought targeted radiation therapy is usually used after surgery, and if he starts it now, future surgery will not be an option.  And I know it will make him ineligible for some clinical trials. 

      Does anyone have any thoughts? Advise? I'm confused and don't want him to start something that is t promising. 

    Viewing 1 reply thread
    • Replies
        • September 22, 2017 at 5:02 pm
        Cindyco
        Participant

          Hi Rachelle, 

          My mom has anal mucosal melanoma, so I won't be much help.  However, there is a facebook group for mucosal melanoma patients that has a lot of people who have done the radiation, but I feel like you're right in that they did the radiation after surgery.  I would ask the other patients who have that primary in the group: https://www.facebook.com/groups/906485416088740/

          Connie

           

           

           

            • September 22, 2017 at 5:12 pm
            oconnorr
            Participant

              Thanks, Connie! I don't have Facebook but this is a good reason sign up. 

              Rachelle

              • September 22, 2017 at 5:41 pm
              Cindyco
              Participant

                I feel like the facebook group is good to compare personal experiences, while I think the MRF forum is better to stay up-to-date on treatments.  It seems like a lot of the mucosal people are much more private due to the areas of their primaries and don't really come here. I wish there was a better place for everyone to find each other since it's a rarer disease!  

              • September 24, 2017 at 11:57 pm
              Bubbles
              Participant

                Hi Rachelle, 

                While mucosal melanoma is certainly its own beast, we have learned that melanoma generally responds to the combo of immunotherapy AND radiation better than it does to either treatment alone.  Here are a zillion reports:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/searchq=radiation+and+immunotherapy  

                Hope that helps.  I wish you and your dad well whatever you decide.  Celeste

            Viewing 1 reply thread

            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.