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Johnfdc7

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      Johnfdc7
      Participant

        Hi Kelly

        Is your husband on Yervoy and taking the combo drugs at the same time? If so, how is his bloodwork? Is his liver tolerating all these drugs together?

        I had read that a clinical trial looking at using Yervoy and Zelboraf together had been stopped due to liver toxicity issues so it would be interesting if the combination of drugs that your husband is on appears to be less toxic.

        Thanks

         

        Johnfdc7
        Participant

          Hi Kelly

          Is your husband on Yervoy and taking the combo drugs at the same time? If so, how is his bloodwork? Is his liver tolerating all these drugs together?

          I had read that a clinical trial looking at using Yervoy and Zelboraf together had been stopped due to liver toxicity issues so it would be interesting if the combination of drugs that your husband is on appears to be less toxic.

          Thanks

           

          Johnfdc7
          Participant

            Hi Kelly

            Is your husband on Yervoy and taking the combo drugs at the same time? If so, how is his bloodwork? Is his liver tolerating all these drugs together?

            I had read that a clinical trial looking at using Yervoy and Zelboraf together had been stopped due to liver toxicity issues so it would be interesting if the combination of drugs that your husband is on appears to be less toxic.

            Thanks

             

            Johnfdc7
            Participant

              Brian,

              I have had similiar outcomes on PET scans for lung nodules in the past (2-7mm) despite them being clearly present on successive previous CT scans. The report stating no FDG uptake has always come with a disclaimer regarding limits of detection etc. My oncologist has always taken the cautious approach and continued to assume that they are active tumours that cannot be detected by PET due to small size. 

              Johnfdc7
              Participant

                Brian,

                I have had similiar outcomes on PET scans for lung nodules in the past (2-7mm) despite them being clearly present on successive previous CT scans. The report stating no FDG uptake has always come with a disclaimer regarding limits of detection etc. My oncologist has always taken the cautious approach and continued to assume that they are active tumours that cannot be detected by PET due to small size. 

                Johnfdc7
                Participant

                  Brian,

                  I have had similiar outcomes on PET scans for lung nodules in the past (2-7mm) despite them being clearly present on successive previous CT scans. The report stating no FDG uptake has always come with a disclaimer regarding limits of detection etc. My oncologist has always taken the cautious approach and continued to assume that they are active tumours that cannot be detected by PET due to small size. 

                  Johnfdc7
                  Participant

                    Nice summary Tim  – thanks.

                    BRAF inhibitor section is a little confusing as you have mixed up the names Dabrafenib and Trametinib a little:

                    GSK BRAFi – Dabrafenib. Marketed as Tafinlar

                    GSK MEKi – Trametinib. Marketed as Mekinist

                    John

                    Johnfdc7
                    Participant

                      Nice summary Tim  – thanks.

                      BRAF inhibitor section is a little confusing as you have mixed up the names Dabrafenib and Trametinib a little:

                      GSK BRAFi – Dabrafenib. Marketed as Tafinlar

                      GSK MEKi – Trametinib. Marketed as Mekinist

                      John

                      Johnfdc7
                      Participant

                        Nice summary Tim  – thanks.

                        BRAF inhibitor section is a little confusing as you have mixed up the names Dabrafenib and Trametinib a little:

                        GSK BRAFi – Dabrafenib. Marketed as Tafinlar

                        GSK MEKi – Trametinib. Marketed as Mekinist

                        John

                        Johnfdc7
                        Participant

                          Thanks Kelly

                          That's really encouraging news and I hope it continues to work well for you guys. I am on the BRAF/MEK combo for the past 18 months and often thought about pushing my onc to add ipi to the mix while things are going well. 

                          Johnfdc7
                          Participant

                            Thanks Kelly

                            That's really encouraging news and I hope it continues to work well for you guys. I am on the BRAF/MEK combo for the past 18 months and often thought about pushing my onc to add ipi to the mix while things are going well. 

                            Johnfdc7
                            Participant

                              Thanks Kelly

                              That's really encouraging news and I hope it continues to work well for you guys. I am on the BRAF/MEK combo for the past 18 months and often thought about pushing my onc to add ipi to the mix while things are going well. 

                              Johnfdc7
                              Participant

                                I have been on Tafinlar for 17 months now and introduced Mekinist about 8 months ago. All the time that I was on Tafinlar alone I did not experience any fever/chills side effects. That all changed once Mekinist was introduced. Within 5 weeks of starting Mekinist, I had my first episode and have experienced many more since. In some cases, an underlying infection eg lung was identified as the trigger for the fever/chills side effects and once this infection was treated, the fevers stopped. On other occassions when infection was not detected, treatment with steroids such as prednisilone for a period has done the job. The drug hasnt been easy to tolerate but at the moment is proving effective in controlling many mets (inc brain) – for that reason and due to the lack of other options, I am determined to stick with it as long as possible. Dont let your doc dismiss the treatment as intolerable until you have explored all options to control the side effects  – this drug could work very well for you given time.

                                 

                                 

                                 

                                 

                                 

                                Johnfdc7
                                Participant

                                  I have been on Tafinlar for 17 months now and introduced Mekinist about 8 months ago. All the time that I was on Tafinlar alone I did not experience any fever/chills side effects. That all changed once Mekinist was introduced. Within 5 weeks of starting Mekinist, I had my first episode and have experienced many more since. In some cases, an underlying infection eg lung was identified as the trigger for the fever/chills side effects and once this infection was treated, the fevers stopped. On other occassions when infection was not detected, treatment with steroids such as prednisilone for a period has done the job. The drug hasnt been easy to tolerate but at the moment is proving effective in controlling many mets (inc brain) – for that reason and due to the lack of other options, I am determined to stick with it as long as possible. Dont let your doc dismiss the treatment as intolerable until you have explored all options to control the side effects  – this drug could work very well for you given time.

                                   

                                   

                                   

                                   

                                   

                                  Johnfdc7
                                  Participant

                                    I have been on Tafinlar for 17 months now and introduced Mekinist about 8 months ago. All the time that I was on Tafinlar alone I did not experience any fever/chills side effects. That all changed once Mekinist was introduced. Within 5 weeks of starting Mekinist, I had my first episode and have experienced many more since. In some cases, an underlying infection eg lung was identified as the trigger for the fever/chills side effects and once this infection was treated, the fevers stopped. On other occassions when infection was not detected, treatment with steroids such as prednisilone for a period has done the job. The drug hasnt been easy to tolerate but at the moment is proving effective in controlling many mets (inc brain) – for that reason and due to the lack of other options, I am determined to stick with it as long as possible. Dont let your doc dismiss the treatment as intolerable until you have explored all options to control the side effects  – this drug could work very well for you given time.

                                     

                                     

                                     

                                     

                                     

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