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Radiation on Monday, 2 new brain tumors

Forums General Melanoma Community Radiation on Monday, 2 new brain tumors

  • Post
    lhaley
    Participant

      Two weeks ago it was discovered that I had 1 new brain met (original was a little more than 2.6cm) and it was small at 3mm.  Yesterday I went in for brain mapping and was shocked to find out not only had this one grown but a new brain met has shown up.  On Monday I will be having SRS for both small mets.

      Two weeks ago it was discovered that I had 1 new brain met (original was a little more than 2.6cm) and it was small at 3mm.  Yesterday I went in for brain mapping and was shocked to find out not only had this one grown but a new brain met has shown up.  On Monday I will be having SRS for both small mets. My oncologist wanted me into a trial for brain tumors with b-raf – it's the trial that James from Sydney has posted about it.  I have decided to stick with the radiation for now and hoping that I don't have to use the drug, I wish that the trial allowed for both the radiation and then the drug.   

      In a little more than 2 weeks I will be celebrating my 6th year as stage IV.  This year has been the most stressful year of them all. 

      Linda

    Viewing 20 reply threads
    • Replies
        King
        Participant

          I hate melanoma!  You have been in a constant battle.  Just continue to fight, fight, fight.  You and your family will be in my thoughts and prayers.  It is so difficult to make treatment decisions but I know you do your homework/research and pick what you think will be the best for you.  That final decision is always up to you.  I'm so sorry, Linda.

           

          Stay Strong
          King

          Stage IV  7/05 Liver mets

          King
          Participant

            I hate melanoma!  You have been in a constant battle.  Just continue to fight, fight, fight.  You and your family will be in my thoughts and prayers.  It is so difficult to make treatment decisions but I know you do your homework/research and pick what you think will be the best for you.  That final decision is always up to you.  I'm so sorry, Linda.

             

            Stay Strong
            King

            Stage IV  7/05 Liver mets

              deardad
              Participant

                Sorry Linda to hear that news, my dad too is fighting brain mets and just finished WBR. It's such a stressful time, but as King said, fight and keep fighting, you're a survivor.

                Nahmi

                deardad
                Participant

                  Sorry Linda to hear that news, my dad too is fighting brain mets and just finished WBR. It's such a stressful time, but as King said, fight and keep fighting, you're a survivor.

                  Nahmi

                  deardad
                  Participant

                    Sorry Linda to hear that news, my dad too is fighting brain mets and just finished WBR. It's such a stressful time, but as King said, fight and keep fighting, you're a survivor.

                    Nahmi

                  King
                  Participant

                    I hate melanoma!  You have been in a constant battle.  Just continue to fight, fight, fight.  You and your family will be in my thoughts and prayers.  It is so difficult to make treatment decisions but I know you do your homework/research and pick what you think will be the best for you.  That final decision is always up to you.  I'm so sorry, Linda.

                     

                    Stay Strong
                    King

                    Stage IV  7/05 Liver mets

                    hope4cure1
                    Participant

                      Linda,  I have come to admire and care about you because of your courage, determination and support for everyone in this battle.  It is that very strength that will carry through your current challenge.  You have made wise decisions, and have 6 years at stage !V to celebrate.  You can, once again, trust your decision wholeheartedly and with confidence.  Please know that I'm keeping you close in my thoughts and prayers.

                      Hope

                      hope4cure1
                      Participant

                        Linda,  I have come to admire and care about you because of your courage, determination and support for everyone in this battle.  It is that very strength that will carry through your current challenge.  You have made wise decisions, and have 6 years at stage !V to celebrate.  You can, once again, trust your decision wholeheartedly and with confidence.  Please know that I'm keeping you close in my thoughts and prayers.

                        Hope

                        hope4cure1
                        Participant

                          Linda,  I have come to admire and care about you because of your courage, determination and support for everyone in this battle.  It is that very strength that will carry through your current challenge.  You have made wise decisions, and have 6 years at stage !V to celebrate.  You can, once again, trust your decision wholeheartedly and with confidence.  Please know that I'm keeping you close in my thoughts and prayers.

                          Hope

                          AllyNTAus
                          Participant

                            Linda, wishing you all the best for your radiation.

                            Regarding the BRAF inhibitor, can you talk to your oncologist about possible compassionate access to Dabrafenib? This is the GSK version of the BRAF inhibitor that has shown some impressive results on a small study group of patients with brain mets.

                            I failed entry to the GSK BRAF/MEK inhibitor trial because of some pneumonitis, but I was still granted compassionate access to Dabrafenib. I under the team at Westmead Hospital in Sydney, and my doctor there is really positive about what Dabrafenib can do. I am also not finding any major side effects from it, it is way better than Zelboraf in terms of side effects from what I see on here about Zelboraf. So don't be afraid to look further into this if you want to after your radiation.

                            AllyNTAus
                            Participant

                              Linda, wishing you all the best for your radiation.

                              Regarding the BRAF inhibitor, can you talk to your oncologist about possible compassionate access to Dabrafenib? This is the GSK version of the BRAF inhibitor that has shown some impressive results on a small study group of patients with brain mets.

                              I failed entry to the GSK BRAF/MEK inhibitor trial because of some pneumonitis, but I was still granted compassionate access to Dabrafenib. I under the team at Westmead Hospital in Sydney, and my doctor there is really positive about what Dabrafenib can do. I am also not finding any major side effects from it, it is way better than Zelboraf in terms of side effects from what I see on here about Zelboraf. So don't be afraid to look further into this if you want to after your radiation.

                                deardad
                                Participant

                                  Hi Ally just wondering if my dad would be eligible for Dabrafenib since he became resistant to Zelboraf and now has brain mets? He had not had a MEK inhbibitor yet? Thanks in advance.

                                  Nahmi from Melbourne

                                  deardad
                                  Participant

                                    Hi Ally just wondering if my dad would be eligible for Dabrafenib since he became resistant to Zelboraf and now has brain mets? He had not had a MEK inhbibitor yet? Thanks in advance.

                                    Nahmi from Melbourne

                                    AllyNTAus
                                    Participant
                                      Nahmi, I really don’t know. I am under Prof Rick Kefford’s team at Westmead, that includes Dr Georgina Long who recently published the early study results on Dabrafenib and brain mets. I believe that as a result of that early trial, there is now a proposed further trial of Dabrafenib for people with brain mets. I just did some searching but can’t find a listing for such a trial so maybe it is not established yet, or I might be recalling incorrectly. Anyway if you can somehow make contact with Dr Long you might be able to get some further information. Sending you and your dad very best wishes
                                      Ally
                                      AllyNTAus
                                      Participant
                                        Nahmi, I really don’t know. I am under Prof Rick Kefford’s team at Westmead, that includes Dr Georgina Long who recently published the early study results on Dabrafenib and brain mets. I believe that as a result of that early trial, there is now a proposed further trial of Dabrafenib for people with brain mets. I just did some searching but can’t find a listing for such a trial so maybe it is not established yet, or I might be recalling incorrectly. Anyway if you can somehow make contact with Dr Long you might be able to get some further information. Sending you and your dad very best wishes
                                        Ally
                                        AllyNTAus
                                        Participant
                                          Nahmi, I really don’t know. I am under Prof Rick Kefford’s team at Westmead, that includes Dr Georgina Long who recently published the early study results on Dabrafenib and brain mets. I believe that as a result of that early trial, there is now a proposed further trial of Dabrafenib for people with brain mets. I just did some searching but can’t find a listing for such a trial so maybe it is not established yet, or I might be recalling incorrectly. Anyway if you can somehow make contact with Dr Long you might be able to get some further information. Sending you and your dad very best wishes
                                          Ally
                                          LynnLuc
                                          Participant

                                            I was looking at the trials using Dabrafenib it they all have "

                                            Exclusion Criteria:

                                            • Any prior use of a BRAF or MEK inhibitor"
                                            LynnLuc
                                            Participant

                                              I was looking at the trials using Dabrafenib it they all have "

                                              Exclusion Criteria:

                                              • Any prior use of a BRAF or MEK inhibitor"
                                              LynnLuc
                                              Participant

                                                I was looking at the trials using Dabrafenib it they all have "

                                                Exclusion Criteria:

                                                • Any prior use of a BRAF or MEK inhibitor"
                                                deardad
                                                Participant

                                                  Hi Ally just wondering if my dad would be eligible for Dabrafenib since he became resistant to Zelboraf and now has brain mets? He had not had a MEK inhbibitor yet? Thanks in advance.

                                                  Nahmi from Melbourne

                                                AllyNTAus
                                                Participant

                                                  Linda, wishing you all the best for your radiation.

                                                  Regarding the BRAF inhibitor, can you talk to your oncologist about possible compassionate access to Dabrafenib? This is the GSK version of the BRAF inhibitor that has shown some impressive results on a small study group of patients with brain mets.

                                                  I failed entry to the GSK BRAF/MEK inhibitor trial because of some pneumonitis, but I was still granted compassionate access to Dabrafenib. I under the team at Westmead Hospital in Sydney, and my doctor there is really positive about what Dabrafenib can do. I am also not finding any major side effects from it, it is way better than Zelboraf in terms of side effects from what I see on here about Zelboraf. So don't be afraid to look further into this if you want to after your radiation.

                                                  jag
                                                  Participant

                                                    Good Luck Linda!

                                                    jag
                                                    Participant

                                                      Good Luck Linda!

                                                        Karin L
                                                        Participant

                                                          Linda, you are so strong and  you have many warriors here that you keep strong.  Fight again, and we will fight along with you by prayer!

                                                          Karin

                                                          Karin L
                                                          Participant

                                                            Linda, you are so strong and  you have many warriors here that you keep strong.  Fight again, and we will fight along with you by prayer!

                                                            Karin

                                                            Karin L
                                                            Participant

                                                              Linda, you are so strong and  you have many warriors here that you keep strong.  Fight again, and we will fight along with you by prayer!

                                                              Karin

                                                            jag
                                                            Participant

                                                              Good Luck Linda!

                                                              lhaley
                                                              Participant

                                                                The dabrafenab is a trial that is being offered in Charlotte with my Dr. He has offered this to me and has tried to convince me to enter the trial.  The problem is I would have to then turn down the radiation and want to try this first.  Just trying to give myself more time by using the radiation as long as I can and then go to the dabrafenab. 

                                                                Thank you everyone

                                                                Linda

                                                                lhaley
                                                                Participant

                                                                  The dabrafenab is a trial that is being offered in Charlotte with my Dr. He has offered this to me and has tried to convince me to enter the trial.  The problem is I would have to then turn down the radiation and want to try this first.  Just trying to give myself more time by using the radiation as long as I can and then go to the dabrafenab. 

                                                                  Thank you everyone

                                                                  Linda

                                                                  lhaley
                                                                  Participant

                                                                    The dabrafenab is a trial that is being offered in Charlotte with my Dr. He has offered this to me and has tried to convince me to enter the trial.  The problem is I would have to then turn down the radiation and want to try this first.  Just trying to give myself more time by using the radiation as long as I can and then go to the dabrafenab. 

                                                                    Thank you everyone

                                                                    Linda

                                                                    vivian
                                                                    Participant

                                                                      Hey Linda,

                                                                      I will be thinking of you and holding you in the light,  just as I always do!  You are my melanoma hero!

                                                                      Lear

                                                                      vivian
                                                                      Participant

                                                                        Hey Linda,

                                                                        I will be thinking of you and holding you in the light,  just as I always do!  You are my melanoma hero!

                                                                        Lear

                                                                          NYKaren
                                                                          Participant
                                                                            Dear Linda,
                                                                            You’ve been through so damn much and now you have this to deal with. You’ve been so strong and brave and supportive of all of us. I think about you all the time.
                                                                            I’ll be thinking of you on Monday. Please let us know how it goes when you feel up to it.
                                                                            Love ya,
                                                                            karen
                                                                            NYKaren
                                                                            Participant
                                                                              Dear Linda,
                                                                              You’ve been through so damn much and now you have this to deal with. You’ve been so strong and brave and supportive of all of us. I think about you all the time.
                                                                              I’ll be thinking of you on Monday. Please let us know how it goes when you feel up to it.
                                                                              Love ya,
                                                                              karen
                                                                              NYKaren
                                                                              Participant
                                                                                Dear Linda,
                                                                                You’ve been through so damn much and now you have this to deal with. You’ve been so strong and brave and supportive of all of us. I think about you all the time.
                                                                                I’ll be thinking of you on Monday. Please let us know how it goes when you feel up to it.
                                                                                Love ya,
                                                                                karen
                                                                              vivian
                                                                              Participant

                                                                                Hey Linda,

                                                                                I will be thinking of you and holding you in the light,  just as I always do!  You are my melanoma hero!

                                                                                Lear

                                                                                TSchulz
                                                                                Participant

                                                                                  Linda, 

                                                                                  I hope the radiation went well today and you are recovering nicely. I hope you get a long, long break from dealing with mel.  All the best fellow fighter.  Troy

                                                                                  TSchulz
                                                                                  Participant

                                                                                    Linda, 

                                                                                    I hope the radiation went well today and you are recovering nicely. I hope you get a long, long break from dealing with mel.  All the best fellow fighter.  Troy

                                                                                    TSchulz
                                                                                    Participant

                                                                                      Linda, 

                                                                                      I hope the radiation went well today and you are recovering nicely. I hope you get a long, long break from dealing with mel.  All the best fellow fighter.  Troy

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