MRF-Logo2019-Horizontal-RGB
New treatment plan
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.

New treatment plan

› Forums › General Melanoma Community › New treatment plan

  • Post
    • December 1, 2016 at 7:42 pm
    stevecathy
    Participant
      My husband has been fighting since July 2015. So everything has went pretty good , until September 26th . He was feeling quite right , arm and leg felt heavy. Went to primary, was sent right to hospital, found brain metastases. Fast forward, he has radiation and started keytruda. Completed 2 keytruda, the third will be today. But he had a fell last Friday, feel to his knees and could not walk . So here we are back at hospital still not walking good so not ready to release. Dr wants to add vemurafenib and cobimetinib with keytruda. He has been on mekinist and taflinar prior before brain mets. Wondering everyone’s thoughts on keytruda with vemurafenib and cobimetinib? Anyone done this combo and luck with brain mets? I would appreciate any words on this. I truly am at a loss . Thank you

    Viewing 11 reply threads
    • Replies
        • December 2, 2016 at 12:55 am
        Mat
        Participant

          The radiation (gamma knife?) should resolve the brain mets.  Braf Mek can also act on brain mets.

          • December 2, 2016 at 12:55 am
          Mat
          Participant

            The radiation (gamma knife?) should resolve the brain mets.  Braf Mek can also act on brain mets.

            • December 2, 2016 at 12:55 am
            Mat
            Participant

              The radiation (gamma knife?) should resolve the brain mets.  Braf Mek can also act on brain mets.

              • December 2, 2016 at 1:16 am
              cancersnewnormal
              Participant

                Hi Cathy… sorry you and your husband are having to endure this scare! Am I correct in assuming the "radiation" you referred to was to treat his brain metastasis? Has he had a follow up brain MRI since falling down? There are so many possible reasons that he may experience instability and difficulty with walking. It could be the brain mets are swelling or bleeding in response to radiation or Keytruda. I am an atypical BRAF mutation, so those drugs do nothing to help me. I did, for a short period, have good response to MEK, but have no experience with vemurafenib or cobimetinib. I was on Keytruda for 20 months (29 rounds), and the brain mets that were cropping up at a rate of 2-4 per month stopped showing up after the second infusion! Was he still on MEK and Taf when all of this hit, or was that a previous treatment that he had completed? I hope you are able to get answers from his doctors very quickly.

                  • December 2, 2016 at 1:45 am
                  stevecathy
                  Participant
                    He has had scan since fall , there is a bleed again so doing 6mg dexamethasone 4 times day. He is little better but wobbly and can not walk far. He was on mek/take until brain mets in Sept. He now has had 3 keytruda infusion , the 3rd was Tues this week. The vemurafenib and cobimetinib will arrive tomorrow. Just seems slow to bounce back , getting worried . Doctor says mets are stable in growth just to allow keytruda to have response. Hopefully adding vemurafenib and cobimetinib combo will help his gait. Ughhhhh, I’m sooo worried for him .
                    • December 2, 2016 at 1:46 am
                    stevecathy
                    Participant
                      Meant no growth
                      • December 2, 2016 at 1:46 am
                      stevecathy
                      Participant
                        Meant no growth
                        • December 2, 2016 at 1:46 am
                        stevecathy
                        Participant
                          Meant no growth
                          • December 2, 2016 at 1:45 am
                          stevecathy
                          Participant
                            He has had scan since fall , there is a bleed again so doing 6mg dexamethasone 4 times day. He is little better but wobbly and can not walk far. He was on mek/take until brain mets in Sept. He now has had 3 keytruda infusion , the 3rd was Tues this week. The vemurafenib and cobimetinib will arrive tomorrow. Just seems slow to bounce back , getting worried . Doctor says mets are stable in growth just to allow keytruda to have response. Hopefully adding vemurafenib and cobimetinib combo will help his gait. Ughhhhh, I’m sooo worried for him .
                            • December 2, 2016 at 1:45 am
                            stevecathy
                            Participant
                              He has had scan since fall , there is a bleed again so doing 6mg dexamethasone 4 times day. He is little better but wobbly and can not walk far. He was on mek/take until brain mets in Sept. He now has had 3 keytruda infusion , the 3rd was Tues this week. The vemurafenib and cobimetinib will arrive tomorrow. Just seems slow to bounce back , getting worried . Doctor says mets are stable in growth just to allow keytruda to have response. Hopefully adding vemurafenib and cobimetinib combo will help his gait. Ughhhhh, I’m sooo worried for him .
                            • December 2, 2016 at 1:16 am
                            cancersnewnormal
                            Participant

                              Hi Cathy… sorry you and your husband are having to endure this scare! Am I correct in assuming the "radiation" you referred to was to treat his brain metastasis? Has he had a follow up brain MRI since falling down? There are so many possible reasons that he may experience instability and difficulty with walking. It could be the brain mets are swelling or bleeding in response to radiation or Keytruda. I am an atypical BRAF mutation, so those drugs do nothing to help me. I did, for a short period, have good response to MEK, but have no experience with vemurafenib or cobimetinib. I was on Keytruda for 20 months (29 rounds), and the brain mets that were cropping up at a rate of 2-4 per month stopped showing up after the second infusion! Was he still on MEK and Taf when all of this hit, or was that a previous treatment that he had completed? I hope you are able to get answers from his doctors very quickly.

                              • December 2, 2016 at 1:16 am
                              cancersnewnormal
                              Participant

                                Hi Cathy… sorry you and your husband are having to endure this scare! Am I correct in assuming the "radiation" you referred to was to treat his brain metastasis? Has he had a follow up brain MRI since falling down? There are so many possible reasons that he may experience instability and difficulty with walking. It could be the brain mets are swelling or bleeding in response to radiation or Keytruda. I am an atypical BRAF mutation, so those drugs do nothing to help me. I did, for a short period, have good response to MEK, but have no experience with vemurafenib or cobimetinib. I was on Keytruda for 20 months (29 rounds), and the brain mets that were cropping up at a rate of 2-4 per month stopped showing up after the second infusion! Was he still on MEK and Taf when all of this hit, or was that a previous treatment that he had completed? I hope you are able to get answers from his doctors very quickly.

                                • December 2, 2016 at 1:29 pm
                                Bubbles
                                Participant

                                  Researchers are placing a lot of hope in combining different BRAF inhibitors with immunotherapy. The idea is to get the rapid response at it's better rate provided by the BRAFi with the durability that immunotherapy can provide. Side effects have been a problem for some when BRAFi was combined with ipi but things are looking good for folks taking BRAFi with anti-PD1 or anti-PD-L1.  Here's a recent report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

                                  It is early days for this approach but it does seem promising. Hang in there. Celeste

                                  • December 2, 2016 at 1:29 pm
                                  Bubbles
                                  Participant

                                    Researchers are placing a lot of hope in combining different BRAF inhibitors with immunotherapy. The idea is to get the rapid response at it's better rate provided by the BRAFi with the durability that immunotherapy can provide. Side effects have been a problem for some when BRAFi was combined with ipi but things are looking good for folks taking BRAFi with anti-PD1 or anti-PD-L1.  Here's a recent report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

                                    It is early days for this approach but it does seem promising. Hang in there. Celeste

                                    • December 2, 2016 at 1:29 pm
                                    Bubbles
                                    Participant

                                      Researchers are placing a lot of hope in combining different BRAF inhibitors with immunotherapy. The idea is to get the rapid response at it's better rate provided by the BRAFi with the durability that immunotherapy can provide. Side effects have been a problem for some when BRAFi was combined with ipi but things are looking good for folks taking BRAFi with anti-PD1 or anti-PD-L1.  Here's a recent report:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

                                      It is early days for this approach but it does seem promising. Hang in there. Celeste

                                      • December 5, 2016 at 7:15 pm
                                      Mikers
                                      Participant

                                        Dear Cathy, does your doctor see advantage of using other type of targeted combo instead of previous?

                                        • December 5, 2016 at 7:15 pm
                                        Mikers
                                        Participant

                                          Dear Cathy, does your doctor see advantage of using other type of targeted combo instead of previous?

                                          • December 5, 2016 at 7:15 pm
                                          Mikers
                                          Participant

                                            Dear Cathy, does your doctor see advantage of using other type of targeted combo instead of previous?

                                        Viewing 11 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