MRF-Logo2019-Horizontal-RGB
melanoma stage 4
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.

melanoma stage 4

› Forums › General Melanoma Community › melanoma stage 4

  • Post
    • October 3, 2011 at 3:14 pm
    beccia1
    Participant

      my orginal melanoma came back after 41/2 years, i also have myeloma at the present time.

       

      i am waiting the results of my genetic testing, but the braf test was negative.

       

      waiting results next week of the c-kit test.

       

      my oncologist at mass general said because of melanoma and the myeloma if both test are negative 

      there is not much he can offer me.

       

      i was wondering if  anybody would have recommendations.

       

      beccia1

      my orginal melanoma came back after 41/2 years, i also have myeloma at the present time.

       

      i am waiting the results of my genetic testing, but the braf test was negative.

       

      waiting results next week of the c-kit test.

       

      my oncologist at mass general said because of melanoma and the myeloma if both test are negative 

      there is not much he can offer me.

       

      i was wondering if  anybody would have recommendations.

       

      beccia1

    Viewing 7 reply threads
    • Replies
        • October 3, 2011 at 3:46 pm
        MichaelFL
        Participant

          You may wish to fill out your profile and give a staging and  treatment history of both the melanoma and myeloma so there can be a more detailed discussion of any possible options.

          Good luck. 

          • October 3, 2011 at 3:46 pm
          MichaelFL
          Participant

            You may wish to fill out your profile and give a staging and  treatment history of both the melanoma and myeloma so there can be a more detailed discussion of any possible options.

            Good luck. 

            • October 3, 2011 at 3:48 pm
            fgilbert63
            Participant

              Try to find a PD-1 trial.  It's unbelievable how quickely oncologist give up on people and don't help them find something else.  Seems like if they do not have a treatment for you then they want nothing to do with you.  Guess it's because they can't make any $$ if they don't treat you.

                • October 3, 2011 at 5:01 pm
                Laurie from maine
                Participant

                  I hope they find something – mass general is usually very good about being up on best treatment.  I hope people on this site can help you find other options

                  laurie from maine

                  • October 3, 2011 at 5:01 pm
                  Laurie from maine
                  Participant

                    I hope they find something – mass general is usually very good about being up on best treatment.  I hope people on this site can help you find other options

                    laurie from maine

                  • October 3, 2011 at 3:48 pm
                  fgilbert63
                  Participant

                    Try to find a PD-1 trial.  It's unbelievable how quickely oncologist give up on people and don't help them find something else.  Seems like if they do not have a treatment for you then they want nothing to do with you.  Guess it's because they can't make any $$ if they don't treat you.

                    • October 3, 2011 at 5:01 pm
                    lhaley
                    Participant

                      First of all welcome to the board.

                      I realize you have an extra issue to deal with when you have a second cancer. What stage is the myeloma and if that cancer is in remission how long ago was it? This is most likely important information because many trials will not take you if you are dealing with a second cancer. THat's to look under exclusions.

                      Since Yervoy is FDA approved why is your Dr not suggesting that?  Also IL2?  I'm bringing them both up because then you would not need to deal with trial protocals.  Also, is your tumor in an area that is surgically removed?  Please fill out your patnet that would give more info for people to help.

                      Linda

                      Stage IV since 06  Presently NED for 3 months (scans tomorrow)

                      • October 3, 2011 at 5:01 pm
                      lhaley
                      Participant

                        First of all welcome to the board.

                        I realize you have an extra issue to deal with when you have a second cancer. What stage is the myeloma and if that cancer is in remission how long ago was it? This is most likely important information because many trials will not take you if you are dealing with a second cancer. THat's to look under exclusions.

                        Since Yervoy is FDA approved why is your Dr not suggesting that?  Also IL2?  I'm bringing them both up because then you would not need to deal with trial protocals.  Also, is your tumor in an area that is surgically removed?  Please fill out your patnet that would give more info for people to help.

                        Linda

                        Stage IV since 06  Presently NED for 3 months (scans tomorrow)

                        • October 4, 2011 at 6:40 am
                        JerryfromFauq
                        Participant

                          What can other Melanoma specialist at Mass General offer?

                          Is there any chance that instead of Myeloma, that it is melanoma that has metastisized to the bones?  I ask because Myeloma causes kidney problems which can elininate the use of IL-2 which places stres on the kidneys.

                             I would also be intrested in looking at PD-1 trials and possibly MEK trials.

                             You might also want to talk with the NIH.

                          • October 4, 2011 at 6:40 am
                          JerryfromFauq
                          Participant

                            What can other Melanoma specialist at Mass General offer?

                            Is there any chance that instead of Myeloma, that it is melanoma that has metastisized to the bones?  I ask because Myeloma causes kidney problems which can elininate the use of IL-2 which places stres on the kidneys.

                               I would also be intrested in looking at PD-1 trials and possibly MEK trials.

                               You might also want to talk with the NIH.

                        Viewing 7 reply threads
                        • 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