Update on Dad

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  • Post
    • April 16, 2012 at 11:01 am
    deardad
    Participant

      Hi everyone, saw dad's oncologist tonight and it was confirmed that a new lesion has appeared in the sub fat after 7 months on Zelboraf. Lesion was excised and disease at this point is stable in liver with slight growth in existing tumors. Hasn't had a MRI yet though.

      Next move to get him on the BRAF MEK combo by Roche if MRI is clear and there is a place for him.

      Hoping the MEK will have an effect in time for an ANTIPD1 trial in Australia.

      What a stressful time, I'm really feeling for everyone going this.

      Nahmi from Melbourne

      Hi everyone, saw dad's oncologist tonight and it was confirmed that a new lesion has appeared in the sub fat after 7 months on Zelboraf. Lesion was excised and disease at this point is stable in liver with slight growth in existing tumors. Hasn't had a MRI yet though.

      Next move to get him on the BRAF MEK combo by Roche if MRI is clear and there is a place for him.

      Hoping the MEK will have an effect in time for an ANTIPD1 trial in Australia.

      What a stressful time, I'm really feeling for everyone going this.

      Nahmi from Melbourne

    Viewing 8 reply threads
    • Replies
        • April 16, 2012 at 3:26 pm
        JerryfromFauq
        Participant

          We feel for you and Dad too. 

               If the new tumor was just in the sub fat near where another tumor was removed, It could just be where  some cells escaped the previous removal and there weren't a good blood supply to get the Zelboraf into it do wipe it out.  I had one tumor that was isolated in fatty tissue with limited blood supply that suddenly appeared two years.  It was removed in January 2009 and no more problems have showed in that area.  Still have stable lung tumors.

            • April 17, 2012 at 11:51 am
            deardad
            Participant

              Hi Jerry,

              Thanks for your post, the tumor is not near a previous one unfortunately. Its totally new and they are pretty sure its progression. Pathology results come in a few days, either way it's good opportunity to move onto MEK as vemurafenib is loosing effectiveness. Im reading here that many wouldn't consider inhibitors until they had tried Yervoy or PD1, drugs that work on sparking an immune response? What do you think about that? Dad's tumor burden was low when starting BRAF and it's still low according the oncologist. Why do you think he started him on inhibitors first? I find it so confusing and my dad hates me second guessing the onc. Puts me such a difficult position.

              Thanks kindly

              Nahmi

              • April 17, 2012 at 11:51 am
              deardad
              Participant

                Hi Jerry,

                Thanks for your post, the tumor is not near a previous one unfortunately. Its totally new and they are pretty sure its progression. Pathology results come in a few days, either way it's good opportunity to move onto MEK as vemurafenib is loosing effectiveness. Im reading here that many wouldn't consider inhibitors until they had tried Yervoy or PD1, drugs that work on sparking an immune response? What do you think about that? Dad's tumor burden was low when starting BRAF and it's still low according the oncologist. Why do you think he started him on inhibitors first? I find it so confusing and my dad hates me second guessing the onc. Puts me such a difficult position.

                Thanks kindly

                Nahmi

                • April 17, 2012 at 11:51 am
                deardad
                Participant

                  Hi Jerry,

                  Thanks for your post, the tumor is not near a previous one unfortunately. Its totally new and they are pretty sure its progression. Pathology results come in a few days, either way it's good opportunity to move onto MEK as vemurafenib is loosing effectiveness. Im reading here that many wouldn't consider inhibitors until they had tried Yervoy or PD1, drugs that work on sparking an immune response? What do you think about that? Dad's tumor burden was low when starting BRAF and it's still low according the oncologist. Why do you think he started him on inhibitors first? I find it so confusing and my dad hates me second guessing the onc. Puts me such a difficult position.

                  Thanks kindly

                  Nahmi

                • April 16, 2012 at 3:26 pm
                JerryfromFauq
                Participant

                  We feel for you and Dad too. 

                       If the new tumor was just in the sub fat near where another tumor was removed, It could just be where  some cells escaped the previous removal and there weren't a good blood supply to get the Zelboraf into it do wipe it out.  I had one tumor that was isolated in fatty tissue with limited blood supply that suddenly appeared two years.  It was removed in January 2009 and no more problems have showed in that area.  Still have stable lung tumors.

                  • April 16, 2012 at 3:26 pm
                  JerryfromFauq
                  Participant

                    We feel for you and Dad too. 

                         If the new tumor was just in the sub fat near where another tumor was removed, It could just be where  some cells escaped the previous removal and there weren't a good blood supply to get the Zelboraf into it do wipe it out.  I had one tumor that was isolated in fatty tissue with limited blood supply that suddenly appeared two years.  It was removed in January 2009 and no more problems have showed in that area.  Still have stable lung tumors.

                    • April 16, 2012 at 11:30 pm
                    s Mom
                    Participant

                      Hi Nahmi,

                      Sounds like you have a good plan in place.  Let us know about that BRAF/MEK combo.  I am interested in it as my son is on Zelboraf now and would have to do a wash for any combo trial.  Liver is stable – that's good news, right?   Hugs to you both – you are in my prayers 🙂

                      Take care,

                      Bridgette (Jeff's Mom)

                        • April 17, 2012 at 11:44 am
                        deardad
                        Participant

                          Hi Bridgette, yes the liver for now is stable which is good but there's no guarantee it will remain that way as the other lesions are progressing. I really want to them to act quickly but the whole trial protocol of booking in pre-scans, paperwork etc slows down the process.

                          I am hoping that the MEK will keep the disease stable for a while until a PD1 trial is available.

                          I hope you're son responds for a long time but have back up plans in case.

                          I will let you know how things go with my dad.

                          Take care

                          Nahmi from Melbourne

                          • April 17, 2012 at 11:44 am
                          deardad
                          Participant

                            Hi Bridgette, yes the liver for now is stable which is good but there's no guarantee it will remain that way as the other lesions are progressing. I really want to them to act quickly but the whole trial protocol of booking in pre-scans, paperwork etc slows down the process.

                            I am hoping that the MEK will keep the disease stable for a while until a PD1 trial is available.

                            I hope you're son responds for a long time but have back up plans in case.

                            I will let you know how things go with my dad.

                            Take care

                            Nahmi from Melbourne

                            • April 17, 2012 at 11:44 am
                            deardad
                            Participant

                              Hi Bridgette, yes the liver for now is stable which is good but there's no guarantee it will remain that way as the other lesions are progressing. I really want to them to act quickly but the whole trial protocol of booking in pre-scans, paperwork etc slows down the process.

                              I am hoping that the MEK will keep the disease stable for a while until a PD1 trial is available.

                              I hope you're son responds for a long time but have back up plans in case.

                              I will let you know how things go with my dad.

                              Take care

                              Nahmi from Melbourne

                            • April 16, 2012 at 11:30 pm
                            s Mom
                            Participant

                              Hi Nahmi,

                              Sounds like you have a good plan in place.  Let us know about that BRAF/MEK combo.  I am interested in it as my son is on Zelboraf now and would have to do a wash for any combo trial.  Liver is stable – that's good news, right?   Hugs to you both – you are in my prayers 🙂

                              Take care,

                              Bridgette (Jeff's Mom)

                              • April 16, 2012 at 11:30 pm
                              s Mom
                              Participant

                                Hi Nahmi,

                                Sounds like you have a good plan in place.  Let us know about that BRAF/MEK combo.  I am interested in it as my son is on Zelboraf now and would have to do a wash for any combo trial.  Liver is stable – that's good news, right?   Hugs to you both – you are in my prayers 🙂

                                Take care,

                                Bridgette (Jeff's Mom)

                                • April 17, 2012 at 12:39 pm
                                James from Sydney
                                Participant

                                  Nahmi hopefully things will improve with the combo, it may be worthwhile to contact Westmead Hospital in Sydney and get onto the Melanoma Trials people they may be able to update you on timing for anti PD1. Prof Rick Kefford is one of the top Melanoma people in Australia and odds are that if the Trials happen Westmead may run one.

                                   

                                  best wishes

                                  James

                                  • April 17, 2012 at 12:39 pm
                                  James from Sydney
                                  Participant

                                    Nahmi hopefully things will improve with the combo, it may be worthwhile to contact Westmead Hospital in Sydney and get onto the Melanoma Trials people they may be able to update you on timing for anti PD1. Prof Rick Kefford is one of the top Melanoma people in Australia and odds are that if the Trials happen Westmead may run one.

                                     

                                    best wishes

                                    James

                                    • April 17, 2012 at 12:39 pm
                                    James from Sydney
                                    Participant

                                      Nahmi hopefully things will improve with the combo, it may be worthwhile to contact Westmead Hospital in Sydney and get onto the Melanoma Trials people they may be able to update you on timing for anti PD1. Prof Rick Kefford is one of the top Melanoma people in Australia and odds are that if the Trials happen Westmead may run one.

                                       

                                      best wishes

                                      James

                                        • April 19, 2012 at 10:43 pm
                                        deardad
                                        Participant

                                          Hi James,

                                          Thanks for that info. I contacted Dr Keffords secretary and she said I would have to make an appointment with Dr Kefford to ask those questions? Or my dad's onc would have to contact Dr Kefford and refer him. I told her we are in Melbourne and just inquiring about PD1 trials….didn't help.

                                          The new met that was removed was confirmed melanoma and we are trying to get onto a MEK trial now, hate waiting.

                                          Take care and thanks for posting.

                                          Nahmi

                                          • April 19, 2012 at 10:43 pm
                                          deardad
                                          Participant

                                            Hi James,

                                            Thanks for that info. I contacted Dr Keffords secretary and she said I would have to make an appointment with Dr Kefford to ask those questions? Or my dad's onc would have to contact Dr Kefford and refer him. I told her we are in Melbourne and just inquiring about PD1 trials….didn't help.

                                            The new met that was removed was confirmed melanoma and we are trying to get onto a MEK trial now, hate waiting.

                                            Take care and thanks for posting.

                                            Nahmi

                                            • April 19, 2012 at 10:43 pm
                                            deardad
                                            Participant

                                              Hi James,

                                              Thanks for that info. I contacted Dr Keffords secretary and she said I would have to make an appointment with Dr Kefford to ask those questions? Or my dad's onc would have to contact Dr Kefford and refer him. I told her we are in Melbourne and just inquiring about PD1 trials….didn't help.

                                              The new met that was removed was confirmed melanoma and we are trying to get onto a MEK trial now, hate waiting.

                                              Take care and thanks for posting.

                                              Nahmi

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