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Zelboraf a bust; going for broke with Yervoy

Forums General Melanoma Community Zelboraf a bust; going for broke with Yervoy

  • Post
    shellebrownies
    Participant

      Haven't been around much lately. Last week we got the bad news confirming that Don did not respond to the Zelboraf. There was progression; he now has brain mets: at least 3 of them. Dr. L. said the scan was not as clear as they'd like, but there was at least 3. Because there are multiple lesions and he's not sure if there may be others, he has recommended Whole Brain Radiation along with radiation on the spine and a course of Yervoy. We've been told this is basically our last shot at recovery.

      Haven't been around much lately. Last week we got the bad news confirming that Don did not respond to the Zelboraf. There was progression; he now has brain mets: at least 3 of them. Dr. L. said the scan was not as clear as they'd like, but there was at least 3. Because there are multiple lesions and he's not sure if there may be others, he has recommended Whole Brain Radiation along with radiation on the spine and a course of Yervoy. We've been told this is basically our last shot at recovery.

      Don goes in today for his first infusion of Yervoy. They are still working on how soon he will start radiation treatments.

      Does anyone here have anything they can tell me about side effects and/or effectiveness of Whole Brain Radiation?

      Thanks!

      Michelle, wife of Don

    Viewing 17 reply threads
    • Replies
        lhaley
        Participant

          Michelle,

          I am so sorry to hear about the progression.  Oh how I hate this disease and the constant issues tormant in your life.  I guess the only thing we can do is to keep fighting and hopefully just figure this out.

          I wish the scan isn't clear enough to specifically tell you what to do.  I know that my tumor is large enough and deep enough that Plan B is the crainectomy instead of the first option.  Different people seem to have different side effects and different effectiveness.  Only 1 Dr suggested WBR and I turned her down at this time. I was told that they would do SRS for at least a few more if they happen to show up on Monday during the radiation and is hiding even more, but not planning on this appearing.   Each of us is so different that we could have example issues and we're still going to react differently.  I know your just looking for hope. wish someone could give you answers. 

          I'll send you an e-mail later. 

          Hugs,

          Linda

          lhaley
          Participant

            Michelle,

            I am so sorry to hear about the progression.  Oh how I hate this disease and the constant issues tormant in your life.  I guess the only thing we can do is to keep fighting and hopefully just figure this out.

            I wish the scan isn't clear enough to specifically tell you what to do.  I know that my tumor is large enough and deep enough that Plan B is the crainectomy instead of the first option.  Different people seem to have different side effects and different effectiveness.  Only 1 Dr suggested WBR and I turned her down at this time. I was told that they would do SRS for at least a few more if they happen to show up on Monday during the radiation and is hiding even more, but not planning on this appearing.   Each of us is so different that we could have example issues and we're still going to react differently.  I know your just looking for hope. wish someone could give you answers. 

            I'll send you an e-mail later. 

            Hugs,

            Linda

            lhaley
            Participant

              Michelle,

              I am so sorry to hear about the progression.  Oh how I hate this disease and the constant issues tormant in your life.  I guess the only thing we can do is to keep fighting and hopefully just figure this out.

              I wish the scan isn't clear enough to specifically tell you what to do.  I know that my tumor is large enough and deep enough that Plan B is the crainectomy instead of the first option.  Different people seem to have different side effects and different effectiveness.  Only 1 Dr suggested WBR and I turned her down at this time. I was told that they would do SRS for at least a few more if they happen to show up on Monday during the radiation and is hiding even more, but not planning on this appearing.   Each of us is so different that we could have example issues and we're still going to react differently.  I know your just looking for hope. wish someone could give you answers. 

              I'll send you an e-mail later. 

              Hugs,

              Linda

                shellebrownies
                Participant

                  I don't think that SRS would be a valid option in Don's case. Once he has progression in an area, it usually grows like gangbusters. Dr. L. is right to worry about tumors he can't see and/or microscopic tumors. I would much rather hit them all at once. Still scary as all heck, though.

                  I really hope your situation is much better handled and you get back to NED soon! πŸ™‚

                  Michelle

                  shellebrownies
                  Participant

                    I don't think that SRS would be a valid option in Don's case. Once he has progression in an area, it usually grows like gangbusters. Dr. L. is right to worry about tumors he can't see and/or microscopic tumors. I would much rather hit them all at once. Still scary as all heck, though.

                    I really hope your situation is much better handled and you get back to NED soon! πŸ™‚

                    Michelle

                    shellebrownies
                    Participant

                      I don't think that SRS would be a valid option in Don's case. Once he has progression in an area, it usually grows like gangbusters. Dr. L. is right to worry about tumors he can't see and/or microscopic tumors. I would much rather hit them all at once. Still scary as all heck, though.

                      I really hope your situation is much better handled and you get back to NED soon! πŸ™‚

                      Michelle

                    FormerCaregiver
                    Participant

                      Michelle, I am saddened to read this news. I don't have any specific info about WBR side
                      effects. However, here is some info about brain mets and radiation treatment in general:
                      http://www.cancer.gov/clinicaltrials/results/summary/2006/stereotactic-radiosurgery0806

                      I hope that Don will respond well to Yervoy.

                      Take care

                      Frank from Australia

                      FormerCaregiver
                      Participant

                        Michelle, I am saddened to read this news. I don't have any specific info about WBR side
                        effects. However, here is some info about brain mets and radiation treatment in general:
                        http://www.cancer.gov/clinicaltrials/results/summary/2006/stereotactic-radiosurgery0806

                        I hope that Don will respond well to Yervoy.

                        Take care

                        Frank from Australia

                        FormerCaregiver
                        Participant

                          Michelle, I am saddened to read this news. I don't have any specific info about WBR side
                          effects. However, here is some info about brain mets and radiation treatment in general:
                          http://www.cancer.gov/clinicaltrials/results/summary/2006/stereotactic-radiosurgery0806

                          I hope that Don will respond well to Yervoy.

                          Take care

                          Frank from Australia

                          dearfoam
                          Participant

                            Did he have the positive test for BRAF mutation? How long was he on Zelboraf? We are still waiting to see if my dad will test positive for that.

                            My dad's first treatment in April was WBR due to six brain lesions, and in his case made a big diiference in his ability to get up and walk around. He did lose most of his hair. His fatigue set in about two weeks into it. His Temodar treatments bagen in May as radiation was ending, so it is hard to distinguish further side effects from one another, though he did stop eating well and lose about 25#. His persoality and judgement have changed some, but it is hard to say if that was independednt of the changes brought on by tumors. Still on Temodar with mixed results.

                            Best,

                            DF

                            dearfoam
                            Participant

                              Did he have the positive test for BRAF mutation? How long was he on Zelboraf? We are still waiting to see if my dad will test positive for that.

                              My dad's first treatment in April was WBR due to six brain lesions, and in his case made a big diiference in his ability to get up and walk around. He did lose most of his hair. His fatigue set in about two weeks into it. His Temodar treatments bagen in May as radiation was ending, so it is hard to distinguish further side effects from one another, though he did stop eating well and lose about 25#. His persoality and judgement have changed some, but it is hard to say if that was independednt of the changes brought on by tumors. Still on Temodar with mixed results.

                              Best,

                              DF

                                shellebrownies
                                Participant

                                  Dearfoam,

                                  My husband had tried to get into the GSK BRAF/MEK trial back in May, and had a sample taken from a liver met at that time. The GSK version of the BRAF test gave us a positive result, but Don ended up washing out of that trial because of quick progression of his disease.

                                  Flash forward to August: a sample from that tissue sample tested for the other trial was sent to PLX for qualification for the Zelboraf extended access trial. His sample tested negative based on the PLX test. His case was appealed and he was allowed on the trial based on his previous positive test.

                                  Apparently, the PLX result was the correct one.

                                  I'm not too concerned about the hair loss: His was just growing back after having been on chemo, so it's not like we're not used to his baldness…

                                  So far, the brain lesions seem to not have made too much difference in Don's behavior. I'm hoping that the treatment won't cause more damage. πŸ™

                                  MIchelle

                                  shellebrownies
                                  Participant

                                    Dearfoam,

                                    My husband had tried to get into the GSK BRAF/MEK trial back in May, and had a sample taken from a liver met at that time. The GSK version of the BRAF test gave us a positive result, but Don ended up washing out of that trial because of quick progression of his disease.

                                    Flash forward to August: a sample from that tissue sample tested for the other trial was sent to PLX for qualification for the Zelboraf extended access trial. His sample tested negative based on the PLX test. His case was appealed and he was allowed on the trial based on his previous positive test.

                                    Apparently, the PLX result was the correct one.

                                    I'm not too concerned about the hair loss: His was just growing back after having been on chemo, so it's not like we're not used to his baldness…

                                    So far, the brain lesions seem to not have made too much difference in Don's behavior. I'm hoping that the treatment won't cause more damage. πŸ™

                                    MIchelle

                                    shellebrownies
                                    Participant

                                      Dearfoam,

                                      My husband had tried to get into the GSK BRAF/MEK trial back in May, and had a sample taken from a liver met at that time. The GSK version of the BRAF test gave us a positive result, but Don ended up washing out of that trial because of quick progression of his disease.

                                      Flash forward to August: a sample from that tissue sample tested for the other trial was sent to PLX for qualification for the Zelboraf extended access trial. His sample tested negative based on the PLX test. His case was appealed and he was allowed on the trial based on his previous positive test.

                                      Apparently, the PLX result was the correct one.

                                      I'm not too concerned about the hair loss: His was just growing back after having been on chemo, so it's not like we're not used to his baldness…

                                      So far, the brain lesions seem to not have made too much difference in Don's behavior. I'm hoping that the treatment won't cause more damage. πŸ™

                                      MIchelle

                                    dearfoam
                                    Participant

                                      Did he have the positive test for BRAF mutation? How long was he on Zelboraf? We are still waiting to see if my dad will test positive for that.

                                      My dad's first treatment in April was WBR due to six brain lesions, and in his case made a big diiference in his ability to get up and walk around. He did lose most of his hair. His fatigue set in about two weeks into it. His Temodar treatments bagen in May as radiation was ending, so it is hard to distinguish further side effects from one another, though he did stop eating well and lose about 25#. His persoality and judgement have changed some, but it is hard to say if that was independednt of the changes brought on by tumors. Still on Temodar with mixed results.

                                      Best,

                                      DF

                                      MariaH
                                      Participant

                                        I can't give you any info on the WBR, but just wanted to let you know we are thinking of you both and wishing you all the best.

                                         

                                        Hugs ((()))

                                        Maria

                                        MariaH
                                        Participant

                                          I can't give you any info on the WBR, but just wanted to let you know we are thinking of you both and wishing you all the best.

                                           

                                          Hugs ((()))

                                          Maria

                                            boot2aboot
                                            Participant

                                              Michelle,

                                              i am speechless…it seemed as though zelboraf worked on everyone…i am sorry

                                              it seems don and i are very unlucky…i had to stop zelboraf for awhile due to overwhelmingly severe immune respnse

                                               

                                              boots

                                               

                                               

                                               

                                               

                                              .

                                              boot2aboot
                                              Participant

                                                Michelle,

                                                i am speechless…it seemed as though zelboraf worked on everyone…i am sorry

                                                it seems don and i are very unlucky…i had to stop zelboraf for awhile due to overwhelmingly severe immune respnse

                                                 

                                                boots

                                                 

                                                 

                                                 

                                                 

                                                .

                                                boot2aboot
                                                Participant

                                                  Michelle,

                                                  i am speechless…it seemed as though zelboraf worked on everyone…i am sorry

                                                  it seems don and i are very unlucky…i had to stop zelboraf for awhile due to overwhelmingly severe immune respnse

                                                   

                                                  boots

                                                   

                                                   

                                                   

                                                   

                                                  .

                                                MariaH
                                                Participant

                                                  I can't give you any info on the WBR, but just wanted to let you know we are thinking of you both and wishing you all the best.

                                                   

                                                  Hugs ((()))

                                                  Maria

                                                  jenmooney363
                                                  Participant

                                                    I just finished Yervoy and am getting ready to start Zelboraf.  I also have brain mets and have had whole brain radiation.  For me, the whole brain radiation wasn't very effective, but I did have gamma knife surgery, which is a form of pinpoint radiation, which did help.  Beware the side effects of the Yervoy were different for me with each infusion.  I did have some success with the Yervoy though.  Most of the tumors in my lungs shrunk, some by half.  I did have new lesions that popped up during the Yervoy treatment though. 

                                                    I would strongly reccommend looking into gamma or cyberknife as opposed to whole brain radiation.  The side effects for me were mainly tiredness and hair loss, but it just wasn't effective.

                                                    jenmooney363
                                                    Participant

                                                      I just finished Yervoy and am getting ready to start Zelboraf.  I also have brain mets and have had whole brain radiation.  For me, the whole brain radiation wasn't very effective, but I did have gamma knife surgery, which is a form of pinpoint radiation, which did help.  Beware the side effects of the Yervoy were different for me with each infusion.  I did have some success with the Yervoy though.  Most of the tumors in my lungs shrunk, some by half.  I did have new lesions that popped up during the Yervoy treatment though. 

                                                      I would strongly reccommend looking into gamma or cyberknife as opposed to whole brain radiation.  The side effects for me were mainly tiredness and hair loss, but it just wasn't effective.

                                                      jenmooney363
                                                      Participant

                                                        I just finished Yervoy and am getting ready to start Zelboraf.  I also have brain mets and have had whole brain radiation.  For me, the whole brain radiation wasn't very effective, but I did have gamma knife surgery, which is a form of pinpoint radiation, which did help.  Beware the side effects of the Yervoy were different for me with each infusion.  I did have some success with the Yervoy though.  Most of the tumors in my lungs shrunk, some by half.  I did have new lesions that popped up during the Yervoy treatment though. 

                                                        I would strongly reccommend looking into gamma or cyberknife as opposed to whole brain radiation.  The side effects for me were mainly tiredness and hair loss, but it just wasn't effective.

                                                        Gpopham
                                                        Participant
                                                          Just found this site. Yervoy has been a miracle for us. My husband was diagnosed in October 2010 and has been through a craniotomy for brain mets, whole brain radiation and chemo. He did not respond to the chemo so was referred to a clinical trial for ippilimomaub in March 2011 (now Yervoy). He has had excellent results with one round of treatment (4 infusions) with Yervoy. Minimal side effects and no evidence of disease advancement. 11 months out and brain MRI’s are negative and lung lesions have shrunk. We wanted to get the good news to others looking for treatments. God bless and we hope you are getting good results as well.
                                                          Gpopham
                                                          Participant
                                                            Just found this site. Yervoy has been a miracle for us. My husband was diagnosed in October 2010 and has been through a craniotomy for brain mets, whole brain radiation and chemo. He did not respond to the chemo so was referred to a clinical trial for ippilimomaub in March 2011 (now Yervoy). He has had excellent results with one round of treatment (4 infusions) with Yervoy. Minimal side effects and no evidence of disease advancement. 11 months out and brain MRI’s are negative and lung lesions have shrunk. We wanted to get the good news to others looking for treatments. God bless and we hope you are getting good results as well.
                                                            Gpopham
                                                            Participant
                                                              Just found this site. Yervoy has been a miracle for us. My husband was diagnosed in October 2010 and has been through a craniotomy for brain mets, whole brain radiation and chemo. He did not respond to the chemo so was referred to a clinical trial for ippilimomaub in March 2011 (now Yervoy). He has had excellent results with one round of treatment (4 infusions) with Yervoy. Minimal side effects and no evidence of disease advancement. 11 months out and brain MRI’s are negative and lung lesions have shrunk. We wanted to get the good news to others looking for treatments. God bless and we hope you are getting good results as well.
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