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Braf combo has stopped working.

Forums General Melanoma Community Braf combo has stopped working.

  • Post
    Banders
    Participant

      I have been on the Braf combo since March and it was working well but now is not working. PET scan results show lung cancer has spread to the leg and brain. They want to put me on Optivo, do brain radiation and Gamma knife. Any advice or suggestions would be appreciated. 

    Viewing 5 reply threads
    • Replies
        khubes
        Participant

          Hi there,

          So sorry to hear the combo has stopped working and about the new mets.

          My husband is currently on Keytruda and has received SRS (or gamma knife) on all 9 of his brain mets.  You mentioned brain radiation AND gamma knife – are your doctors discussing doing whole brain radiation?  I would be a little wary of that – we thought that my husband was going to have WBR after he had 4 brain mets pop up in 2 weeks, but his radiation oncologists were rather against it.  There can be cognitive issues that stem from WBR – targeted radiation (we were told) is safer and can be more effective.   

          Optivo sounds like a good plan.  Anti-PD1 drugs can pass the blood-brain barrier, which is wonderful for patients with brain lesions.  My husband is tolerating Keytruda very well and has minimal side effects – hoping the same for you!!  

          Lots of good thoughts and prayers coming your way.  

          Katie 

          khubes
          Participant

            Hi there,

            So sorry to hear the combo has stopped working and about the new mets.

            My husband is currently on Keytruda and has received SRS (or gamma knife) on all 9 of his brain mets.  You mentioned brain radiation AND gamma knife – are your doctors discussing doing whole brain radiation?  I would be a little wary of that – we thought that my husband was going to have WBR after he had 4 brain mets pop up in 2 weeks, but his radiation oncologists were rather against it.  There can be cognitive issues that stem from WBR – targeted radiation (we were told) is safer and can be more effective.   

            Optivo sounds like a good plan.  Anti-PD1 drugs can pass the blood-brain barrier, which is wonderful for patients with brain lesions.  My husband is tolerating Keytruda very well and has minimal side effects – hoping the same for you!!  

            Lots of good thoughts and prayers coming your way.  

            Katie 

            khubes
            Participant

              Hi there,

              So sorry to hear the combo has stopped working and about the new mets.

              My husband is currently on Keytruda and has received SRS (or gamma knife) on all 9 of his brain mets.  You mentioned brain radiation AND gamma knife – are your doctors discussing doing whole brain radiation?  I would be a little wary of that – we thought that my husband was going to have WBR after he had 4 brain mets pop up in 2 weeks, but his radiation oncologists were rather against it.  There can be cognitive issues that stem from WBR – targeted radiation (we were told) is safer and can be more effective.   

              Optivo sounds like a good plan.  Anti-PD1 drugs can pass the blood-brain barrier, which is wonderful for patients with brain lesions.  My husband is tolerating Keytruda very well and has minimal side effects – hoping the same for you!!  

              Lots of good thoughts and prayers coming your way.  

              Katie 

              Bubbles
              Participant

                Hey Banders, 

                In April 2010 I had SRS to a brain lesion and the right upper lobe of my lung removed due to melanoma mets. That December I started a nivolumab/Opdivo trial that lasted 2 1/2 years. I had scans last week and remain NED….for 5 years. Now 27 months since my last nivo infusion.

                Here is an older post about anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                Here is a post regarding side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                And here are several articles that address the positive benefits gained when immunotherapy (like anti-PD1) is combined or sequential with radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                If I can do it…you can do it better!  Hang in there! Wishing you well, celeste

                Bubbles
                Participant

                  Hey Banders, 

                  In April 2010 I had SRS to a brain lesion and the right upper lobe of my lung removed due to melanoma mets. That December I started a nivolumab/Opdivo trial that lasted 2 1/2 years. I had scans last week and remain NED….for 5 years. Now 27 months since my last nivo infusion.

                  Here is an older post about anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                  Here is a post regarding side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                  And here are several articles that address the positive benefits gained when immunotherapy (like anti-PD1) is combined or sequential with radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                  If I can do it…you can do it better!  Hang in there! Wishing you well, celeste

                  Bubbles
                  Participant

                    Hey Banders, 

                    In April 2010 I had SRS to a brain lesion and the right upper lobe of my lung removed due to melanoma mets. That December I started a nivolumab/Opdivo trial that lasted 2 1/2 years. I had scans last week and remain NED….for 5 years. Now 27 months since my last nivo infusion.

                    Here is an older post about anti-PD1 generally:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/06/anti-pd1-in-melanoma-t-cells-brain-and.html

                    Here is a post regarding side effects: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

                    And here are several articles that address the positive benefits gained when immunotherapy (like anti-PD1) is combined or sequential with radiation:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/radiation-for-melanomabetter-when.html

                    If I can do it…you can do it better!  Hang in there! Wishing you well, celeste

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