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Update on Hoffman-Roche BRAF/MEK Phase I

Forums General Melanoma Community Update on Hoffman-Roche BRAF/MEK Phase I

  • Post
    Eileen L
    Participant

      Hi, folks. Just a quick update on what I am experiencing on the Hoffman-Roche BRAF/MEK trial. I had PET/CT about two weeks ago that basically showed my two tumors, one lung and one adrenal gland, had an overall 50% reduction in mass and are in no longer reactive. The radiologist thinks the remaining tumor might be just dead tissue. This is after only six weeks on the drug combo! Also, almost all of the side effects (rash on my legs, trunk, arms and face, joint pains, fever and chills, sores in my mouth, fatigue, sore feet and fingers) are gone except for the sun sensitivity.

      Hi, folks. Just a quick update on what I am experiencing on the Hoffman-Roche BRAF/MEK trial. I had PET/CT about two weeks ago that basically showed my two tumors, one lung and one adrenal gland, had an overall 50% reduction in mass and are in no longer reactive. The radiologist thinks the remaining tumor might be just dead tissue. This is after only six weeks on the drug combo! Also, almost all of the side effects (rash on my legs, trunk, arms and face, joint pains, fever and chills, sores in my mouth, fatigue, sore feet and fingers) are gone except for the sun sensitivity. I just developed a new mild rash about a  week ago  on my abdomen that appeared during the week that I wasn't on MEK (this trial has me on the BRAF all the time and the MEK 3 weeks on, one week off) which resolved when I went back on the MEK.  

      I am extremely pleased with the results! The biggest problem has been the number of appointments I have had. Since it is a Phase I trial they are keeping very close tabs of us at the beginning, with weekly lab draws, EKGs, doctor's appointments, etc. Now that I have been in the trial for eight weeks I go to monthly appointments, lab draws, and EKGs, and every six week PET/CT scans. I expect to soon glow in the dark from all the scans! 

      Eileen L

    Viewing 11 reply threads
    • Replies
        JC
        Participant

          Did I read right that your initial lesion was thin, less than 1mm?  And it still came back?  Was the pathology initially correct?  Was there extensive regression?

           

          Good to hear good results.

          JC
          Participant

            Did I read right that your initial lesion was thin, less than 1mm?  And it still came back?  Was the pathology initially correct?  Was there extensive regression?

             

            Good to hear good results.

              Eileen L
              Participant
                Yes, my initial lesion was a thin one! My stage IV diagnosis was 61/2 years after my Stage I. This beast is cunning and unpredictable!
                Eileen L
                Eileen L
                Participant
                  Yes, my initial lesion was a thin one! My stage IV diagnosis was 61/2 years after my Stage I. This beast is cunning and unpredictable!
                  Eileen L
                  Eileen L
                  Participant
                    Yes, my initial lesion was a thin one! My stage IV diagnosis was 61/2 years after my Stage I. This beast is cunning and unpredictable!
                    Eileen L
                  JC
                  Participant

                    Did I read right that your initial lesion was thin, less than 1mm?  And it still came back?  Was the pathology initially correct?  Was there extensive regression?

                     

                    Good to hear good results.

                    s Mom
                    Participant

                      It's good to hear positive results from that combination.  This trial is one of the options the oncs gave my son when he went to Florida.  Glad to hear it's working!

                      Bridgette (Jeff's Mom)

                        Eileen L
                        Participant
                          Thx Bridgette!

                          Eileen L

                          Eileen L
                          Participant
                            Thx Bridgette!

                            Eileen L

                            Eileen L
                            Participant
                              Thx Bridgette!

                              Eileen L

                            s Mom
                            Participant

                              It's good to hear positive results from that combination.  This trial is one of the options the oncs gave my son when he went to Florida.  Glad to hear it's working!

                              Bridgette (Jeff's Mom)

                              s Mom
                              Participant

                                It's good to hear positive results from that combination.  This trial is one of the options the oncs gave my son when he went to Florida.  Glad to hear it's working!

                                Bridgette (Jeff's Mom)

                                King
                                Participant

                                  Hi Eileen,

                                  It's good to hear from you especially with such great news.  Those first weeks sound rough with all those side effects and frequent appointments.  Look what's happening already though. ๐Ÿ™‚

                                  One day at a time and keep us posted.

                                  Stay Strong

                                  King

                                  Stage IV 7/05  Liver Mets

                                    Eileen L
                                    Participant
                                      Good to hear from you King! Thx for you good wishes. Next scan is In a few weeks. They come one after another on this trial, every six weeks.

                                      Eileen L

                                      Eileen L
                                      Participant
                                        Good to hear from you King! Thx for you good wishes. Next scan is In a few weeks. They come one after another on this trial, every six weeks.

                                        Eileen L

                                        Eileen L
                                        Participant
                                          Good to hear from you King! Thx for you good wishes. Next scan is In a few weeks. They come one after another on this trial, every six weeks.

                                          Eileen L

                                        King
                                        Participant

                                          Hi Eileen,

                                          It's good to hear from you especially with such great news.  Those first weeks sound rough with all those side effects and frequent appointments.  Look what's happening already though. ๐Ÿ™‚

                                          One day at a time and keep us posted.

                                          Stay Strong

                                          King

                                          Stage IV 7/05  Liver Mets

                                          King
                                          Participant

                                            Hi Eileen,

                                            It's good to hear from you especially with such great news.  Those first weeks sound rough with all those side effects and frequent appointments.  Look what's happening already though. ๐Ÿ™‚

                                            One day at a time and keep us posted.

                                            Stay Strong

                                            King

                                            Stage IV 7/05  Liver Mets

                                            Harry in Fair Oaks
                                            Participant

                                              I'm glad the drugs are effective for you, and that the side effects have greatly diminished.  It's interesting that they're modulating the MEK in your trial in this way.  If you remember me from previous posts, I'm on the GSK BRAF/MEK trial and that protocol has me taking the MEK drug every day.  They have told me many times that they see much reduced side effects with the combo. 

                                              I wish you continued success and complete NED scans in the near future.

                                              – Harry

                                                Eileen L
                                                Participant
                                                  Yes Harry. I do remember that you are on the GSK Braf/MEK trial! Roche structured their trial in a very baffling way. Apparently some of us are taking the MEK every day, some like me are on 3 weeks, off one week. We are on different daily doses as well. I wanted to get on the GSK trial but it had just closed when I needed it! I am grateful to be getting what I am on.

                                                  As far as side effects, I did develop another rash on my abdomen this time and during the week I was off MEK. Much milder than the first one and within the first week of going back on the MEK it started to resolve. I will be interested to see what happens when I go off the MEK for a week again.

                                                  Eileen L

                                                  Eileen L
                                                  Participant
                                                    Yes Harry. I do remember that you are on the GSK Braf/MEK trial! Roche structured their trial in a very baffling way. Apparently some of us are taking the MEK every day, some like me are on 3 weeks, off one week. We are on different daily doses as well. I wanted to get on the GSK trial but it had just closed when I needed it! I am grateful to be getting what I am on.

                                                    As far as side effects, I did develop another rash on my abdomen this time and during the week I was off MEK. Much milder than the first one and within the first week of going back on the MEK it started to resolve. I will be interested to see what happens when I go off the MEK for a week again.

                                                    Eileen L

                                                    Eileen L
                                                    Participant
                                                      Yes Harry. I do remember that you are on the GSK Braf/MEK trial! Roche structured their trial in a very baffling way. Apparently some of us are taking the MEK every day, some like me are on 3 weeks, off one week. We are on different daily doses as well. I wanted to get on the GSK trial but it had just closed when I needed it! I am grateful to be getting what I am on.

                                                      As far as side effects, I did develop another rash on my abdomen this time and during the week I was off MEK. Much milder than the first one and within the first week of going back on the MEK it started to resolve. I will be interested to see what happens when I go off the MEK for a week again.

                                                      Eileen L

                                                    Harry in Fair Oaks
                                                    Participant

                                                      I'm glad the drugs are effective for you, and that the side effects have greatly diminished.  It's interesting that they're modulating the MEK in your trial in this way.  If you remember me from previous posts, I'm on the GSK BRAF/MEK trial and that protocol has me taking the MEK drug every day.  They have told me many times that they see much reduced side effects with the combo. 

                                                      I wish you continued success and complete NED scans in the near future.

                                                      – Harry

                                                      Harry in Fair Oaks
                                                      Participant

                                                        I'm glad the drugs are effective for you, and that the side effects have greatly diminished.  It's interesting that they're modulating the MEK in your trial in this way.  If you remember me from previous posts, I'm on the GSK BRAF/MEK trial and that protocol has me taking the MEK drug every day.  They have told me many times that they see much reduced side effects with the combo. 

                                                        I wish you continued success and complete NED scans in the near future.

                                                        – Harry

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