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Zelboraf going on working but brian mets

Forums General Melanoma Community Zelboraf going on working but brian mets

  • Post
    uccio2014
    Participant

      Hi all

      my wife is under z since august 2014 and from last tac all tumors disappears or strinks.

      But some brian mets appears in last tac (16 from MRI only one 6 mm visible from TAC)

      Our doc suggest for 3 weeks  wbrt daily session with low radiation and go on with z after (z will be stopped during radiation). 

      In the meaning my wife founds some inguinal lynfonode grow up (where was lynfonode sentunel in the primal melanoma removal in 2013.

       

      Have someone similar experience?

      TY

      Antonio

    Viewing 8 reply threads
    • Replies
        arthurjedi007
        Participant

          She has to go off the zelboraf while doing radiation because she could get severe skin burns. At least that is what the doc told me when I was on the taf mek combo and they had to radiate my spine.

          Im not sure why the zelboraf isn't taking care of the ones in her head like it is the others. It is supposed to work there too if I understood Celeste right. Was that her first MRI or were they comparing it to an older one? If this was her first and she is feeling ok you might want a second opinion. But even so I doubt they could read the MRI that wrong. Good luck.

          Artie

          arthurjedi007
          Participant

            She has to go off the zelboraf while doing radiation because she could get severe skin burns. At least that is what the doc told me when I was on the taf mek combo and they had to radiate my spine.

            Im not sure why the zelboraf isn't taking care of the ones in her head like it is the others. It is supposed to work there too if I understood Celeste right. Was that her first MRI or were they comparing it to an older one? If this was her first and she is feeling ok you might want a second opinion. But even so I doubt they could read the MRI that wrong. Good luck.

            Artie

            arthurjedi007
            Participant

              She has to go off the zelboraf while doing radiation because she could get severe skin burns. At least that is what the doc told me when I was on the taf mek combo and they had to radiate my spine.

              Im not sure why the zelboraf isn't taking care of the ones in her head like it is the others. It is supposed to work there too if I understood Celeste right. Was that her first MRI or were they comparing it to an older one? If this was her first and she is feeling ok you might want a second opinion. But even so I doubt they could read the MRI that wrong. Good luck.

              Artie

                ed williams
                Participant

                  Hi Artie, it could be that the Zelboraf has reached the point where the Melanoma has mutated and the targeted therapy is no longer effective. If they haven't used Immunotherapy yet it might be time to switch. Hope you are feeling good!!! Ed

                  uccio2014
                  Participant

                    Could be

                    but in the liver the number of spot decrease by 50% against previous TAC

                    And no other evidence.

                    BTW my wife feel really good (a part the anxiety) and also blood analisys are pretty good.

                    Maybe brian mets was there also before, but just in the last period one became enought big to be evident in TAC (all the other are not evident except in RMN

                     

                     

                    uccio2014
                    Participant

                      Could be

                      but in the liver the number of spot decrease by 50% against previous TAC

                      And no other evidence.

                      BTW my wife feel really good (a part the anxiety) and also blood analisys are pretty good.

                      Maybe brian mets was there also before, but just in the last period one became enought big to be evident in TAC (all the other are not evident except in RMN

                       

                       

                      uccio2014
                      Participant

                        Could be

                        but in the liver the number of spot decrease by 50% against previous TAC

                        And no other evidence.

                        BTW my wife feel really good (a part the anxiety) and also blood analisys are pretty good.

                        Maybe brian mets was there also before, but just in the last period one became enought big to be evident in TAC (all the other are not evident except in RMN

                         

                         

                        ed williams
                        Participant

                          Hi Artie, it could be that the Zelboraf has reached the point where the Melanoma has mutated and the targeted therapy is no longer effective. If they haven't used Immunotherapy yet it might be time to switch. Hope you are feeling good!!! Ed

                          ed williams
                          Participant

                            Hi Artie, it could be that the Zelboraf has reached the point where the Melanoma has mutated and the targeted therapy is no longer effective. If they haven't used Immunotherapy yet it might be time to switch. Hope you are feeling good!!! Ed

                            uccio2014
                            Participant

                              Hi Artie

                              it was the first RNM but we are not going to ask for a second opinion

                              fortunatelly we found one of the best oncologist in Italy and if he trust the radiologist we have no dubt (either time)

                              what doc said us is that z has to be stopped because of radiation sensibility, but after the radio cycle we will have an "happy hour" because brian-emo barrer (or whatever is the name) will be off for some days and z will be more effective.

                              At now we are more worried about lynfonode because could show z end working.

                              But last tac was on 1/7 and do not shows anything.

                              No idea if something can grow up so much in 20 days

                               

                              uccio2014
                              Participant

                                Hi Artie

                                it was the first RNM but we are not going to ask for a second opinion

                                fortunatelly we found one of the best oncologist in Italy and if he trust the radiologist we have no dubt (either time)

                                what doc said us is that z has to be stopped because of radiation sensibility, but after the radio cycle we will have an "happy hour" because brian-emo barrer (or whatever is the name) will be off for some days and z will be more effective.

                                At now we are more worried about lynfonode because could show z end working.

                                But last tac was on 1/7 and do not shows anything.

                                No idea if something can grow up so much in 20 days

                                 

                                uccio2014
                                Participant

                                  Hi Artie

                                  it was the first RNM but we are not going to ask for a second opinion

                                  fortunatelly we found one of the best oncologist in Italy and if he trust the radiologist we have no dubt (either time)

                                  what doc said us is that z has to be stopped because of radiation sensibility, but after the radio cycle we will have an "happy hour" because brian-emo barrer (or whatever is the name) will be off for some days and z will be more effective.

                                  At now we are more worried about lynfonode because could show z end working.

                                  But last tac was on 1/7 and do not shows anything.

                                  No idea if something can grow up so much in 20 days

                                   

                                Patina
                                Participant

                                  Have you also discussed Gamma Knife Radiation (aka SRS) for the brain mets? There is a good study that say this treatment option for brain mets was superior to whole brain.

                                  If you do choose to use Gamma Knife talk to your doctor about adding Yervoy (imunotheray) or something similar (another immunotherapy).  My Mom had this combo at Stage IV with brain mets.  She had Gamma Knife first followed by Yervoy 4 days later.  Results for her were amazing and there are studies that show this significantly increases the response rate of Yervoy with radiation. – She did have a recent reocurrance of a treated brain met treated in the first round of Gamma Knife treatment (8 of 9 treated), but she's had no cognitive issues with 25 brain mets and Yervoy worked on every tumor she had and she had a lot….

                                  Also, one of the best things to do is to get a true expert in radiosurgery.  Get a first, second or third oppinion on treatment options and find out who the best is and have them preform the surgery. This is really important in the reatment plan. Unfortunatly our first treatment was performed by someone who LEFT a tumor untreated, which required a second Gamma Knife Radiation treatment for 17 tumors. – My Mom has done great though. – Far superior than most patients.

                                  I  prefer having all doctors at the same center. We found when we had a melanoma specialist and the radidation oncologist in different systems her care was less than optimial because the doctors didn't talk to each other and we were never told to see the radiation oncologist after the followup. As soon as we moved everything under one roof is far far superior. – Food for thought.

                                  Good Luck!

                                   

                                  Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors

                                  "The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."

                                  http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

                                   

                                  Ipilimumab and radiation therapy for melanoma brain metastases

                                  In the present study, the survival of the SRS and ipilimumab group was significantly longer than that for SRS alone (median of 19.9 months vs. 4.0 months; P = 0.009), with a HR of 0.31 that was statistically significant (P = 0.009). Neither SRS nor ipilimumab treatment individually appears to account for the prolonged survival seen in this analysis. 

                                  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

                                   

                                  Patina
                                  Participant

                                    Have you also discussed Gamma Knife Radiation (aka SRS) for the brain mets? There is a good study that say this treatment option for brain mets was superior to whole brain.

                                    If you do choose to use Gamma Knife talk to your doctor about adding Yervoy (imunotheray) or something similar (another immunotherapy).  My Mom had this combo at Stage IV with brain mets.  She had Gamma Knife first followed by Yervoy 4 days later.  Results for her were amazing and there are studies that show this significantly increases the response rate of Yervoy with radiation. – She did have a recent reocurrance of a treated brain met treated in the first round of Gamma Knife treatment (8 of 9 treated), but she's had no cognitive issues with 25 brain mets and Yervoy worked on every tumor she had and she had a lot….

                                    Also, one of the best things to do is to get a true expert in radiosurgery.  Get a first, second or third oppinion on treatment options and find out who the best is and have them preform the surgery. This is really important in the reatment plan. Unfortunatly our first treatment was performed by someone who LEFT a tumor untreated, which required a second Gamma Knife Radiation treatment for 17 tumors. – My Mom has done great though. – Far superior than most patients.

                                    I  prefer having all doctors at the same center. We found when we had a melanoma specialist and the radidation oncologist in different systems her care was less than optimial because the doctors didn't talk to each other and we were never told to see the radiation oncologist after the followup. As soon as we moved everything under one roof is far far superior. – Food for thought.

                                    Good Luck!

                                     

                                    Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors

                                    "The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."

                                    http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

                                     

                                    Ipilimumab and radiation therapy for melanoma brain metastases

                                    In the present study, the survival of the SRS and ipilimumab group was significantly longer than that for SRS alone (median of 19.9 months vs. 4.0 months; P = 0.009), with a HR of 0.31 that was statistically significant (P = 0.009). Neither SRS nor ipilimumab treatment individually appears to account for the prolonged survival seen in this analysis. 

                                    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

                                     

                                      uccio2014
                                      Participant

                                        ty all for the answere

                                        i suppose mets are too little for gamma knife

                                        btw any experience with wbrt? expecially about short and long time side effects

                                        uccio2014
                                        Participant

                                          ty all for the answere

                                          i suppose mets are too little for gamma knife

                                          btw any experience with wbrt? expecially about short and long time side effects

                                          uccio2014
                                          Participant

                                            ty all for the answere

                                            i suppose mets are too little for gamma knife

                                            btw any experience with wbrt? expecially about short and long time side effects

                                          Patina
                                          Participant

                                            Have you also discussed Gamma Knife Radiation (aka SRS) for the brain mets? There is a good study that say this treatment option for brain mets was superior to whole brain.

                                            If you do choose to use Gamma Knife talk to your doctor about adding Yervoy (imunotheray) or something similar (another immunotherapy).  My Mom had this combo at Stage IV with brain mets.  She had Gamma Knife first followed by Yervoy 4 days later.  Results for her were amazing and there are studies that show this significantly increases the response rate of Yervoy with radiation. – She did have a recent reocurrance of a treated brain met treated in the first round of Gamma Knife treatment (8 of 9 treated), but she's had no cognitive issues with 25 brain mets and Yervoy worked on every tumor she had and she had a lot….

                                            Also, one of the best things to do is to get a true expert in radiosurgery.  Get a first, second or third oppinion on treatment options and find out who the best is and have them preform the surgery. This is really important in the reatment plan. Unfortunatly our first treatment was performed by someone who LEFT a tumor untreated, which required a second Gamma Knife Radiation treatment for 17 tumors. – My Mom has done great though. – Far superior than most patients.

                                            I  prefer having all doctors at the same center. We found when we had a melanoma specialist and the radidation oncologist in different systems her care was less than optimial because the doctors didn't talk to each other and we were never told to see the radiation oncologist after the followup. As soon as we moved everything under one roof is far far superior. – Food for thought.

                                            Good Luck!

                                             

                                            Study finds Gamma Knife radiosurgery alone yields equal survival outcomes for patients with two to 10 tumors

                                            "The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT."

                                            http://www.elekta.com/press/9381f384-ff4a-4561-80c7-5175f5e0f381/study-finds-gamma-knife-radiosurgery-alone-yields-equal-survival-outcomes-for-patients-with-two-to-10-tumors.html

                                             

                                            Ipilimumab and radiation therapy for melanoma brain metastases

                                            In the present study, the survival of the SRS and ipilimumab group was significantly longer than that for SRS alone (median of 19.9 months vs. 4.0 months; P = 0.009), with a HR of 0.31 that was statistically significant (P = 0.009). Neither SRS nor ipilimumab treatment individually appears to account for the prolonged survival seen in this analysis. 

                                            http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/

                                             

                                            Bubbles
                                            Participant

                                              Antonio,

                                              So sorry for all that you and your wife are going through.  Here is a synopsis of an article that reviewed 73 studies regarding melanoma brain mets and the outcomes of the treatments reported.  There is data re: SRS vs WBRT.  There are also links to other reports on melanoma brain met treatments.

                                              http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

                                              Hope that helps.  I wish you and your wife well.  Celeste

                                              Bubbles
                                              Participant

                                                Antonio,

                                                So sorry for all that you and your wife are going through.  Here is a synopsis of an article that reviewed 73 studies regarding melanoma brain mets and the outcomes of the treatments reported.  There is data re: SRS vs WBRT.  There are also links to other reports on melanoma brain met treatments.

                                                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

                                                Hope that helps.  I wish you and your wife well.  Celeste

                                                Bubbles
                                                Participant

                                                  Antonio,

                                                  So sorry for all that you and your wife are going through.  Here is a synopsis of an article that reviewed 73 studies regarding melanoma brain mets and the outcomes of the treatments reported.  There is data re: SRS vs WBRT.  There are also links to other reports on melanoma brain met treatments.

                                                  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/07/a-really-good-review-of-treatment-data.html

                                                  Hope that helps.  I wish you and your wife well.  Celeste

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