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NEEED OPINONS on switching OPDIVO for BRAF/MEK

Forums General Melanoma Community NEEED OPINONS on switching OPDIVO for BRAF/MEK

  • Post
    keepthefaith11
    Participant
      A little bit of a background. My dad was diagnosed in July with stage 4 melanoma in July. 13 metastasis in the Brain. Ranging from 2 millimeters to 15 millimeters. He had WBRT and scans have been stable with some improvement on the latest scan. They have been suspecting a met in his abdomen as well which on the latest pet scan had shrunk. It has been about 10 weeks since he started OPDIVO treatment. A week ago he had his fifth infusion and started experiencing some mild or diarrhea. He was hospitalized and put on 60 milligrams of prednisone. The diarrhea has now cleared. He also had some heart fibrillation and low blood pressure. He is in good spirits but very weak physically. They did another brain scan today and it looks overall stable, but slightly more swelling. They feel it is time to switch to the Inhibitors at this point. I think mainly because of these new developing physical issues.

      Questions:

      1. Once you switch to the Inhibitors can you ever go back on Opdivo again? When you have already been on it. I feel they might not be giving the immunotherapy enough of a chance, but on the other hand his overall well-being is deteriorating. I see the point with starting the Inhibitors to get a quick response.

      2. The five infusions he has already been given, does the Opdivo keep working in his body and we might see a response in a couple of weeks or so?

      3. Could it be that the immunotherapy has worked on the met in the abdomen but not yet in the brain? Does it take longer for it to work in the brain?

      4. And finally, does this sound like an acceptable approach? I feel that once you move onto inhibitors that is the beginning of the end since usually it does not last that long.

      He is currently taking 1500 milligrams of Keppra and the 60 milligrams of prednisone. I am wondering if the fact that he is so much weaker has anything to do with the medications.

      Thank you for your support. I am feeling extremely anxious and worried right now.

      Annie

    Viewing 14 reply threads
    • Replies
        ed williams
        Participant

          Hi Annie, here are a few video that might help!!! Best Wishes!!!Ed  https://www.youtube.com/watch?v=K-Ivcf_YnNQ   If you look on the side of the youtube  page you will see others in this onclive series. Hope they help!!!Ed

          ed williams
          Participant

            Hi Annie, here are a few video that might help!!! Best Wishes!!!Ed  https://www.youtube.com/watch?v=K-Ivcf_YnNQ   If you look on the side of the youtube  page you will see others in this onclive series. Hope they help!!!Ed

            ed williams
            Participant

              Hi Annie, here are a few video that might help!!! Best Wishes!!!Ed  https://www.youtube.com/watch?v=K-Ivcf_YnNQ   If you look on the side of the youtube  page you will see others in this onclive series. Hope they help!!!Ed

              Bubbles
              Participant

                Hi Annie,

                Everyone is different, but here are some reports that might be of interest:

                All the Melaoma Big Dogs keep admonishing…be patient with the patient….immunotherapy takes time:

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                Also….pseudoprogression is real….meaning increased size (swelling) of tumors as inflammation due to T cell influx occurs. 

                Additionally, part of this report includes charts with time to response on Keytruda…which is basically the same as Opdivo:

                http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html

                Then, there is the idea that one could decrease tumor size rapidly with BRAFi…then switch to (or back to)…immunotherapy…before resistance occurs.

                Wishing you my best.  Celeste

                 

                  keepthefaith11
                  Participant
                    Thank you Celeste, as always! That is so tricky, knowing WHEN to switch back…if things are going well on BRAF/MEK, making the decision to stop and move to immunotherapy again. I am hoping the 5 doses of OPDIVO he already has floating around, will kick in and do some good as the BRAF/MEK is working simultaneously.

                    Do you think 5 doses is enough to make an impact?

                    keepthefaith11
                    Participant
                      Thank you Celeste, as always! That is so tricky, knowing WHEN to switch back…if things are going well on BRAF/MEK, making the decision to stop and move to immunotherapy again. I am hoping the 5 doses of OPDIVO he already has floating around, will kick in and do some good as the BRAF/MEK is working simultaneously.

                      Do you think 5 doses is enough to make an impact?

                      keepthefaith11
                      Participant
                        Thank you Celeste, as always! That is so tricky, knowing WHEN to switch back…if things are going well on BRAF/MEK, making the decision to stop and move to immunotherapy again. I am hoping the 5 doses of OPDIVO he already has floating around, will kick in and do some good as the BRAF/MEK is working simultaneously.

                        Do you think 5 doses is enough to make an impact?

                      Bubbles
                      Participant

                        Hi Annie,

                        Everyone is different, but here are some reports that might be of interest:

                        All the Melaoma Big Dogs keep admonishing…be patient with the patient….immunotherapy takes time:

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                        Also….pseudoprogression is real….meaning increased size (swelling) of tumors as inflammation due to T cell influx occurs. 

                        Additionally, part of this report includes charts with time to response on Keytruda…which is basically the same as Opdivo:

                        http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html

                        Then, there is the idea that one could decrease tumor size rapidly with BRAFi…then switch to (or back to)…immunotherapy…before resistance occurs.

                        Wishing you my best.  Celeste

                         

                        Bubbles
                        Participant

                          Hi Annie,

                          Everyone is different, but here are some reports that might be of interest:

                          All the Melaoma Big Dogs keep admonishing…be patient with the patient….immunotherapy takes time:

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html

                          Also….pseudoprogression is real….meaning increased size (swelling) of tumors as inflammation due to T cell influx occurs. 

                          Additionally, part of this report includes charts with time to response on Keytruda…which is basically the same as Opdivo:

                          http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/dr-daud-reviews-asco-2016-immunology.html

                          Then, there is the idea that one could decrease tumor size rapidly with BRAFi…then switch to (or back to)…immunotherapy…before resistance occurs.

                          Wishing you my best.  Celeste

                           

                          Mat
                          Participant

                            To answer one of the questions, you can "go back" to immunotherapy after BRAF-MEK.  Some patients also use PD-1 concurrently with BRAF-MEK, though my guess is that they may not do this with an older person who is presently hospitalized.  The nice thing about BRAF-MEK is that when it works, it works quickly–within days, not weeks.

                            Mat
                            Participant

                              To answer one of the questions, you can "go back" to immunotherapy after BRAF-MEK.  Some patients also use PD-1 concurrently with BRAF-MEK, though my guess is that they may not do this with an older person who is presently hospitalized.  The nice thing about BRAF-MEK is that when it works, it works quickly–within days, not weeks.

                                keepthefaith11
                                Participant
                                  Thank you Mat. So I am thinking, possibly down the road when he recovers and gains stength back, they could add Opdivo and do both. When is the trial on that study going to be done?
                                  keepthefaith11
                                  Participant
                                    Thank you Mat. So I am thinking, possibly down the road when he recovers and gains stength back, they could add Opdivo and do both. When is the trial on that study going to be done?
                                    keepthefaith11
                                    Participant
                                      Thank you Mat. So I am thinking, possibly down the road when he recovers and gains stength back, they could add Opdivo and do both. When is the trial on that study going to be done?
                                    Mat
                                    Participant

                                      To answer one of the questions, you can "go back" to immunotherapy after BRAF-MEK.  Some patients also use PD-1 concurrently with BRAF-MEK, though my guess is that they may not do this with an older person who is presently hospitalized.  The nice thing about BRAF-MEK is that when it works, it works quickly–within days, not weeks.

                                      keepthefaith11
                                      Participant
                                        And another question, can you get back on BRAF/MEK at a later point if you have already done a round of it?
                                        keepthefaith11
                                        Participant
                                          And another question, can you get back on BRAF/MEK at a later point if you have already done a round of it?
                                          keepthefaith11
                                          Participant
                                            And another question, can you get back on BRAF/MEK at a later point if you have already done a round of it?
                                            Bubbles
                                            Participant

                                              Here's a report on BRAF/MEK with immunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

                                              And yes, folks have used BRAFi, and later returned to them after other treatment.  There are also those who have been maintained on BRAF/MEK combo's for years through the use of alternate dosing strategies and other things.  These folks are not the 'norm' but it can happen.  Celeste

                                              Bubbles
                                              Participant

                                                Here's a report on BRAF/MEK with immunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

                                                And yes, folks have used BRAFi, and later returned to them after other treatment.  There are also those who have been maintained on BRAF/MEK combo's for years through the use of alternate dosing strategies and other things.  These folks are not the 'norm' but it can happen.  Celeste

                                                  keepthefaith11
                                                  Participant
                                                    Interesying studies there Celeste. Seems a couple of them are finalized. Do they release preliminary findings? Curious to see what the results are. Hoping for a revolutionary addition that will make these inhibitors long lasting!
                                                    keepthefaith11
                                                    Participant
                                                      Interesying studies there Celeste. Seems a couple of them are finalized. Do they release preliminary findings? Curious to see what the results are. Hoping for a revolutionary addition that will make these inhibitors long lasting!
                                                      Bubbles
                                                      Participant

                                                        The last link in that post will take you to the complete article….you can branch off and do more research from there.  Sometimes preliminary stats are posted…..usually only if researchers are wanting to push for a phase 2 or phase 3 trial.  Clinicaltrials.gov should post where trials are at….actively recruiting, in process but no longer recruiting, complete, etc.  There is a bit of lag time with those notifications.  And some resuts can be found there or you can figure out titles to research.  c

                                                        Bubbles
                                                        Participant

                                                          The last link in that post will take you to the complete article….you can branch off and do more research from there.  Sometimes preliminary stats are posted…..usually only if researchers are wanting to push for a phase 2 or phase 3 trial.  Clinicaltrials.gov should post where trials are at….actively recruiting, in process but no longer recruiting, complete, etc.  There is a bit of lag time with those notifications.  And some resuts can be found there or you can figure out titles to research.  c

                                                          keepthefaith11
                                                          Participant
                                                            Thanks for clarifying. It says that the data collection will begin in Dec. 2016 for the study on weather continuous or intermittent dosage is better for the BRAF/MEK combo.

                                                            When a study closes and they collect the info, how long usually until the results are published?

                                                            keepthefaith11
                                                            Participant
                                                              Thanks for clarifying. It says that the data collection will begin in Dec. 2016 for the study on weather continuous or intermittent dosage is better for the BRAF/MEK combo.

                                                              When a study closes and they collect the info, how long usually until the results are published?

                                                              keepthefaith11
                                                              Participant
                                                                Thanks for clarifying. It says that the data collection will begin in Dec. 2016 for the study on weather continuous or intermittent dosage is better for the BRAF/MEK combo.

                                                                When a study closes and they collect the info, how long usually until the results are published?

                                                                Bubbles
                                                                Participant

                                                                  The last link in that post will take you to the complete article….you can branch off and do more research from there.  Sometimes preliminary stats are posted…..usually only if researchers are wanting to push for a phase 2 or phase 3 trial.  Clinicaltrials.gov should post where trials are at….actively recruiting, in process but no longer recruiting, complete, etc.  There is a bit of lag time with those notifications.  And some resuts can be found there or you can figure out titles to research.  c

                                                                  keepthefaith11
                                                                  Participant
                                                                    Interesying studies there Celeste. Seems a couple of them are finalized. Do they release preliminary findings? Curious to see what the results are. Hoping for a revolutionary addition that will make these inhibitors long lasting!
                                                                  Bubbles
                                                                  Participant

                                                                    Here's a report on BRAF/MEK with immunotherapy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/brafmek-combined-with-immunotherapy.html

                                                                    And yes, folks have used BRAFi, and later returned to them after other treatment.  There are also those who have been maintained on BRAF/MEK combo's for years through the use of alternate dosing strategies and other things.  These folks are not the 'norm' but it can happen.  Celeste

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