brain mets
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brain mets

› Forums › General Melanoma Community › brain mets

  • Post
    • October 7, 2013 at 1:04 pm
    Mazz
    Participant

       

       

      Hello a close relative who has been Ned on zelboraf for almost a year just got diagnosed with 2 brain mets , one bleeding . The brain mets can be removed by opration and further treatment will be given . We do not know what treatment will be offered.

      Any feedback what treatment works best on brain is highly appreciated. More over  I would like to know if the Braf / mek combo helps to avoid reoccurance of brain mets.

       

      Thanks a lot

      Mazz

    Viewing 11 reply threads
    • Replies
        • October 7, 2013 at 4:25 pm
        kylez
        Participant

           

          Hi Mazz, 
           
          For me, after crantiotomy #2 and follow-up radiation to the resected tumor beds in 2011, I was given Yervoy (BRAF negative). I believe that treatment likely played a role in my stability to date.
           
          Per some journal articles in PubMed, three recent drugs have proven actiity in the brain (everything is a percentage play in melanoma though): ipilimumab (aka Yervoy), the two FDA approved BRAF inhibitors; and there's also an expectation that BRAF/MEK will have the same or better action in the brain. 
           
          Here's one such journal article's abstract, from PubMed. The full article calls the BRAF/MEK combination "CombiDT". 
           
          The purpose of this study is to review the development of BRAF inhibitors, with emphasis on the trials conducted with dabrafenib (GSK2118436) and the evolving role of dabrafenib in treatment for melanoma patients. Fifty percent of cutaneous melanomas have mutations in BRAF, resulting in elevated activity of the mitogen-activated protein kinase signaling pathway. Dabrafenib inhibits the mutant BRAF (BRAF(mut)) protein in melanomas with BRAF(V600E) and BRAF(V600K) genotypes. BRAF(V600E) metastatic melanoma patients who receive dabrafenib treatment exhibit high clinical response rates and compared with dacarbazine chemotherapy, progression-free survival. Efficacy has also been demonstrated in BRAF(V600K) patients and in those with brain metastases. Dabrafenib has a generally mild and manageable toxicity profile. Cutaneous squamous cell carcinomas and pyrexia are the most significant adverse effects. Dabrafenib appears similar to vemurafenib with regard to efficacy but it is associated with less toxicity. It is expected that new combinations of targeted drugs, such as the combination of dabrafenib and trametinib(GSK1120212, a MEK inhibitor), will provide higher response rates and more durable clinical benefit than dabrafenib monotherapy.
           
           
          The full article is available in all its detail as well, by clicking on the FREE PMC ARTICLE link at the bottom of the article, or going directly to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3523565 ….
          • October 7, 2013 at 4:25 pm
          kylez
          Participant

             

            Hi Mazz, 
             
            For me, after crantiotomy #2 and follow-up radiation to the resected tumor beds in 2011, I was given Yervoy (BRAF negative). I believe that treatment likely played a role in my stability to date.
             
            Per some journal articles in PubMed, three recent drugs have proven actiity in the brain (everything is a percentage play in melanoma though): ipilimumab (aka Yervoy), the two FDA approved BRAF inhibitors; and there's also an expectation that BRAF/MEK will have the same or better action in the brain. 
             
            Here's one such journal article's abstract, from PubMed. The full article calls the BRAF/MEK combination "CombiDT". 
             
            The purpose of this study is to review the development of BRAF inhibitors, with emphasis on the trials conducted with dabrafenib (GSK2118436) and the evolving role of dabrafenib in treatment for melanoma patients. Fifty percent of cutaneous melanomas have mutations in BRAF, resulting in elevated activity of the mitogen-activated protein kinase signaling pathway. Dabrafenib inhibits the mutant BRAF (BRAF(mut)) protein in melanomas with BRAF(V600E) and BRAF(V600K) genotypes. BRAF(V600E) metastatic melanoma patients who receive dabrafenib treatment exhibit high clinical response rates and compared with dacarbazine chemotherapy, progression-free survival. Efficacy has also been demonstrated in BRAF(V600K) patients and in those with brain metastases. Dabrafenib has a generally mild and manageable toxicity profile. Cutaneous squamous cell carcinomas and pyrexia are the most significant adverse effects. Dabrafenib appears similar to vemurafenib with regard to efficacy but it is associated with less toxicity. It is expected that new combinations of targeted drugs, such as the combination of dabrafenib and trametinib(GSK1120212, a MEK inhibitor), will provide higher response rates and more durable clinical benefit than dabrafenib monotherapy.
             
             
            The full article is available in all its detail as well, by clicking on the FREE PMC ARTICLE link at the bottom of the article, or going directly to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3523565 ….
            • October 7, 2013 at 4:25 pm
            kylez
            Participant

               

              Hi Mazz, 
               
              For me, after crantiotomy #2 and follow-up radiation to the resected tumor beds in 2011, I was given Yervoy (BRAF negative). I believe that treatment likely played a role in my stability to date.
               
              Per some journal articles in PubMed, three recent drugs have proven actiity in the brain (everything is a percentage play in melanoma though): ipilimumab (aka Yervoy), the two FDA approved BRAF inhibitors; and there's also an expectation that BRAF/MEK will have the same or better action in the brain. 
               
              Here's one such journal article's abstract, from PubMed. The full article calls the BRAF/MEK combination "CombiDT". 
               
              The purpose of this study is to review the development of BRAF inhibitors, with emphasis on the trials conducted with dabrafenib (GSK2118436) and the evolving role of dabrafenib in treatment for melanoma patients. Fifty percent of cutaneous melanomas have mutations in BRAF, resulting in elevated activity of the mitogen-activated protein kinase signaling pathway. Dabrafenib inhibits the mutant BRAF (BRAF(mut)) protein in melanomas with BRAF(V600E) and BRAF(V600K) genotypes. BRAF(V600E) metastatic melanoma patients who receive dabrafenib treatment exhibit high clinical response rates and compared with dacarbazine chemotherapy, progression-free survival. Efficacy has also been demonstrated in BRAF(V600K) patients and in those with brain metastases. Dabrafenib has a generally mild and manageable toxicity profile. Cutaneous squamous cell carcinomas and pyrexia are the most significant adverse effects. Dabrafenib appears similar to vemurafenib with regard to efficacy but it is associated with less toxicity. It is expected that new combinations of targeted drugs, such as the combination of dabrafenib and trametinib(GSK1120212, a MEK inhibitor), will provide higher response rates and more durable clinical benefit than dabrafenib monotherapy.
               
               
              The full article is available in all its detail as well, by clicking on the FREE PMC ARTICLE link at the bottom of the article, or going directly to http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3523565 ….
              • October 7, 2013 at 5:21 pm
              POW
              Participant

                For reasons I do not understand, it is not uncommon for people who respond to Zelborfaf to eventually develop brain mets. As with all other mets, it is best to remove them surgically, if possible. That way you will know that they are GONE. Depending on the case, sometimes the surgical removal is followed by SRS radiation treatments to the tumor site to make sure they got it all. If surgery is not possible, the brain mets are usuallyl treated with SRS alone, which usually works pretty well. Patients can continue with Zelboraf after surgery and/or SRS. It is possible that more brain mets may eventually occur.

                As Kyle so clearly said, dabrafenif plus MEK is  a newer treatment option than Zelboraf. Dabrafenib itself and especially the dabrafenib plus MEK may be more effective than Zelboraf at preventing brain mets as well as causing fewer side effects. So if your relative's doctors can surgicallyl remove the current brain mets and then follow up with dabrafeniv plus MEK, that sounds like an excellent plan of attack. There are no guarantees with melanoma, but this would be a good way to go.

                • October 7, 2013 at 5:21 pm
                POW
                Participant

                  For reasons I do not understand, it is not uncommon for people who respond to Zelborfaf to eventually develop brain mets. As with all other mets, it is best to remove them surgically, if possible. That way you will know that they are GONE. Depending on the case, sometimes the surgical removal is followed by SRS radiation treatments to the tumor site to make sure they got it all. If surgery is not possible, the brain mets are usuallyl treated with SRS alone, which usually works pretty well. Patients can continue with Zelboraf after surgery and/or SRS. It is possible that more brain mets may eventually occur.

                  As Kyle so clearly said, dabrafenif plus MEK is  a newer treatment option than Zelboraf. Dabrafenib itself and especially the dabrafenib plus MEK may be more effective than Zelboraf at preventing brain mets as well as causing fewer side effects. So if your relative's doctors can surgicallyl remove the current brain mets and then follow up with dabrafeniv plus MEK, that sounds like an excellent plan of attack. There are no guarantees with melanoma, but this would be a good way to go.

                  • October 7, 2013 at 5:21 pm
                  POW
                  Participant

                    For reasons I do not understand, it is not uncommon for people who respond to Zelborfaf to eventually develop brain mets. As with all other mets, it is best to remove them surgically, if possible. That way you will know that they are GONE. Depending on the case, sometimes the surgical removal is followed by SRS radiation treatments to the tumor site to make sure they got it all. If surgery is not possible, the brain mets are usuallyl treated with SRS alone, which usually works pretty well. Patients can continue with Zelboraf after surgery and/or SRS. It is possible that more brain mets may eventually occur.

                    As Kyle so clearly said, dabrafenif plus MEK is  a newer treatment option than Zelboraf. Dabrafenib itself and especially the dabrafenib plus MEK may be more effective than Zelboraf at preventing brain mets as well as causing fewer side effects. So if your relative's doctors can surgicallyl remove the current brain mets and then follow up with dabrafeniv plus MEK, that sounds like an excellent plan of attack. There are no guarantees with melanoma, but this would be a good way to go.

                    • October 8, 2013 at 1:42 am
                    Mat
                    Participant
                      Shortly after my stage IV diagnosis in July, I developed a small brain met. I started on the GSK combo around August 1. Two weeks later I had a gamma knife procedure and the neurosurgeon confirmed that the brain met had shrunk (from the GSK combo) by about one-third.
                      • October 8, 2013 at 1:42 am
                      Mat
                      Participant
                        Shortly after my stage IV diagnosis in July, I developed a small brain met. I started on the GSK combo around August 1. Two weeks later I had a gamma knife procedure and the neurosurgeon confirmed that the brain met had shrunk (from the GSK combo) by about one-third.
                        • October 8, 2013 at 1:42 am
                        Mat
                        Participant
                          Shortly after my stage IV diagnosis in July, I developed a small brain met. I started on the GSK combo around August 1. Two weeks later I had a gamma knife procedure and the neurosurgeon confirmed that the brain met had shrunk (from the GSK combo) by about one-third.
                          • October 10, 2013 at 8:15 am
                          Mazz
                          Participant

                            Dear all 

                            Thanks for sharing your knowledge and life experiences.

                            Her oncologist suggested that maybe she can avoid the operation and have cyber knife. If things go wrong the surgeon can still chop the 2 mets out. As a follow up treatment they offered Yervoy.

                            Trying not to worry to much for my little sister , she is only 28 years old and it's not easy to see her going all through this shit ( sorry ) .

                            Thanks for your support you are always in my prayers 

                              • October 10, 2013 at 3:38 pm
                              kylez
                              Participant

                                Hi again Mazz,

                                FIWI I have had two brain surgery episodes — the first in 2010 (a single craniotomy + Cyber Knife only on a 2nd tumor) and the second in 2011 (a double craniotomy + Gamma Knife only on 2 additional tumors). And Yervoy immediately after the 2011 resections + radiation.

                                 

                                Like your sister, I had more than 1 tumor (each time). Both times, they had clear recommendation that, for some of the tumors, radiation was likely the best way to go (based on location and size), and for others, surgical resection was likely the best way. So that's why I had mixed treatment approaches (surgical resection for some, and radiation for others). 

                                I was scared and intimidated by the prospect of brain surgery, especially the first time. I went ahead only because it was made clear to me it was likely the best way to go. I also got a second opinion to confirm what the first facility was advising to me. I will say that with brain mets, the strength and experience of the neurosurgery / radiation oncology practices is probably as important  as having a melanoma specialist for an oncologist.
                                 
                                As far as Yervoy, which your sister is being offered, I believe I was probably in the percentage of people that benefited from it. I didn't get any real side effects, but your sister should try to get a handle on how experienced her facility is with administering Yervoy, just in case there are any serious ones. The more experience and volume, the better I would think. 
                                 
                                Good luck to your sister.
                                – Kyle
                                 
                                P.S. To bring my own story up to date, in 2012 there was some worry about new growth. They did 3 MRIs in one 3-month period to try to figure out what was going on. They decided it was probably swelling from radiation effects and/or Yervoy response. Things have since calmed down and been stable, so I think they were right.
                                • October 11, 2013 at 5:21 am
                                Mazz
                                Participant

                                  Hello Kylie

                                   

                                  Thanks for finding time to reply again to my post,

                                  She is being assesed by a melanoma specialists in Royal Marsden , we are waiting for their final decision then she can go ahead with what ever their  decision will be.  I am hoping that yervoy does the trick afterwards and keeps this dreaded desease at bay.

                                  I am continiously praying that Anti Pd1 is soon released on the market. We tried to get her into a trial not easy though. It's a shame that such a promising medicine that could save lives is taking so long.I tried to look uo the internet hoping to find dates of release but to no use.

                                  • October 11, 2013 at 5:21 am
                                  Mazz
                                  Participant

                                    Hello Kylie

                                     

                                    Thanks for finding time to reply again to my post,

                                    She is being assesed by a melanoma specialists in Royal Marsden , we are waiting for their final decision then she can go ahead with what ever their  decision will be.  I am hoping that yervoy does the trick afterwards and keeps this dreaded desease at bay.

                                    I am continiously praying that Anti Pd1 is soon released on the market. We tried to get her into a trial not easy though. It's a shame that such a promising medicine that could save lives is taking so long.I tried to look uo the internet hoping to find dates of release but to no use.

                                    • October 11, 2013 at 5:21 am
                                    Mazz
                                    Participant

                                      Hello Kylie

                                       

                                      Thanks for finding time to reply again to my post,

                                      She is being assesed by a melanoma specialists in Royal Marsden , we are waiting for their final decision then she can go ahead with what ever their  decision will be.  I am hoping that yervoy does the trick afterwards and keeps this dreaded desease at bay.

                                      I am continiously praying that Anti Pd1 is soon released on the market. We tried to get her into a trial not easy though. It's a shame that such a promising medicine that could save lives is taking so long.I tried to look uo the internet hoping to find dates of release but to no use.

                                      • October 10, 2013 at 3:38 pm
                                      kylez
                                      Participant

                                        Hi again Mazz,

                                        FIWI I have had two brain surgery episodes — the first in 2010 (a single craniotomy + Cyber Knife only on a 2nd tumor) and the second in 2011 (a double craniotomy + Gamma Knife only on 2 additional tumors). And Yervoy immediately after the 2011 resections + radiation.

                                         

                                        Like your sister, I had more than 1 tumor (each time). Both times, they had clear recommendation that, for some of the tumors, radiation was likely the best way to go (based on location and size), and for others, surgical resection was likely the best way. So that's why I had mixed treatment approaches (surgical resection for some, and radiation for others). 

                                        I was scared and intimidated by the prospect of brain surgery, especially the first time. I went ahead only because it was made clear to me it was likely the best way to go. I also got a second opinion to confirm what the first facility was advising to me. I will say that with brain mets, the strength and experience of the neurosurgery / radiation oncology practices is probably as important  as having a melanoma specialist for an oncologist.
                                         
                                        As far as Yervoy, which your sister is being offered, I believe I was probably in the percentage of people that benefited from it. I didn't get any real side effects, but your sister should try to get a handle on how experienced her facility is with administering Yervoy, just in case there are any serious ones. The more experience and volume, the better I would think. 
                                         
                                        Good luck to your sister.
                                        – Kyle
                                         
                                        P.S. To bring my own story up to date, in 2012 there was some worry about new growth. They did 3 MRIs in one 3-month period to try to figure out what was going on. They decided it was probably swelling from radiation effects and/or Yervoy response. Things have since calmed down and been stable, so I think they were right.
                                        • October 10, 2013 at 3:38 pm
                                        kylez
                                        Participant

                                          Hi again Mazz,

                                          FIWI I have had two brain surgery episodes — the first in 2010 (a single craniotomy + Cyber Knife only on a 2nd tumor) and the second in 2011 (a double craniotomy + Gamma Knife only on 2 additional tumors). And Yervoy immediately after the 2011 resections + radiation.

                                           

                                          Like your sister, I had more than 1 tumor (each time). Both times, they had clear recommendation that, for some of the tumors, radiation was likely the best way to go (based on location and size), and for others, surgical resection was likely the best way. So that's why I had mixed treatment approaches (surgical resection for some, and radiation for others). 

                                          I was scared and intimidated by the prospect of brain surgery, especially the first time. I went ahead only because it was made clear to me it was likely the best way to go. I also got a second opinion to confirm what the first facility was advising to me. I will say that with brain mets, the strength and experience of the neurosurgery / radiation oncology practices is probably as important  as having a melanoma specialist for an oncologist.
                                           
                                          As far as Yervoy, which your sister is being offered, I believe I was probably in the percentage of people that benefited from it. I didn't get any real side effects, but your sister should try to get a handle on how experienced her facility is with administering Yervoy, just in case there are any serious ones. The more experience and volume, the better I would think. 
                                           
                                          Good luck to your sister.
                                          – Kyle
                                           
                                          P.S. To bring my own story up to date, in 2012 there was some worry about new growth. They did 3 MRIs in one 3-month period to try to figure out what was going on. They decided it was probably swelling from radiation effects and/or Yervoy response. Things have since calmed down and been stable, so I think they were right.
                                        • October 10, 2013 at 8:15 am
                                        Mazz
                                        Participant

                                          Dear all 

                                          Thanks for sharing your knowledge and life experiences.

                                          Her oncologist suggested that maybe she can avoid the operation and have cyber knife. If things go wrong the surgeon can still chop the 2 mets out. As a follow up treatment they offered Yervoy.

                                          Trying not to worry to much for my little sister , she is only 28 years old and it's not easy to see her going all through this shit ( sorry ) .

                                          Thanks for your support you are always in my prayers 

                                          • October 10, 2013 at 8:15 am
                                          Mazz
                                          Participant

                                            Dear all 

                                            Thanks for sharing your knowledge and life experiences.

                                            Her oncologist suggested that maybe she can avoid the operation and have cyber knife. If things go wrong the surgeon can still chop the 2 mets out. As a follow up treatment they offered Yervoy.

                                            Trying not to worry to much for my little sister , she is only 28 years old and it's not easy to see her going all through this shit ( sorry ) .

                                            Thanks for your support you are always in my prayers 

                                        Viewing 11 reply threads
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