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.

COspouse

Forum Replies Created

Viewing 2 reply threads
  • Replies
      COspouse
      Participant

        Good luck, Simon and Tracey! 

        My husband has 3 brain mets now after progressing on Dabrafenib/Trametinib.  Gamma knife was immediately mentioned by his oncologist. We meet with the Gamma knife guy tomorrow to discuss things.  Tentatively scheduled for a week from Thursday – 11/9.

        His mets are in the cerebellum (2) and left parietal lobe (relates to coordinated muscle movement, I think). No symptoms, no headaches.  I’ll be asking that same question:  are there areas that can’t have gamma knife?

        My husband had a 15month run on intermittent (trial) Dabrafenib/Trametinib (5 weeks on/3 weeks off) with stable/shrinking lung mets before developing the brain mets.

        Ipi-Nivo is in the present plan too, though I read it’s not as effective post BRAFi/MEKi progression.

        -Bette

        COspouse
        Participant

          *journeys     –  coffee helps 😉

           

          COspouse
          Participant

            My husband chose Dabrafenib/Trametinib as he's also a Type 1 Diabetic.  The potential side effects of immunotherapy meant they would have had him in ICU to monitor him closely (steroids maybe a no-go since he's diabetic).  He's on the intermittent trial (randomized to 1 week on/3 off/4 on). His tumor load was small (lungs only), initially reduced slightly, now stable.  9 months on trial so far.  Side effects have been fever/chills, so he's been dose-reduced.

            I feel like we're holding our breath, waiting for progression, but studies have shown some nice long-term data, and he feels pretty decent, all in all.

            COspouse
            Participant

              Thanks for answering the “how many times can Gamma knife be done?” question.  I was wondering that one, too.  

              Regards to you and your wife,

              Bette

              COspouse
              Participant

                Hi Mat, 

                Thanks for the vision of the light at the end of the tunnel.  Life without Melanoma? What a shining moonbeam vision! Congratulations to you!  

                Ok. Deep breath here. Thanks for the fortification.

                Onward.

                Upward.

                COspouse
                Participant

                  Thanks.  … and Keytruda for you.  How long has your wife been on it?  How often do they do scans?

                  We’re accustomed to having scans every 8 weeks since my husband was on a trial.  I’m not looking forward to less regular (perhaps) info…

              Viewing 2 reply threads
              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