Please review this new treatment plan

Forums General Melanoma Community Please review this new treatment plan

  • Post
    adriana cooper
    Participant

      Post Ipi scan last month demonstrated some growth in existing areas of lungs and arm as well as some new ones not previously noted. Over the last 4-5 weeks Adriana has felt things are still advancing, Dr. agrees and has scheduled new scans in the next week or so with the plan to start Zelboraf for a few weeks then on to Keytruda ASAP although he is asking the insurance to go straight to Keytruda and skip the Zel. He wants to hold back Taf/Mek to be used later if tumors get out of hand. Some comments on this plan are welcome. My question (if some one could address) is can Taf/Mek be used after Zel? The info here in the MRF website suggests no on the targeted therapy section of the melanoma treatment page. Or should she start with Taf/Mek and then can she go back to it at a later time if needed again. I know there was some previous discussion of going back on but I can't seem to find it.

      Not trying to second guess Dr. But he seems to think it's possible to skip the BRAF at this time but our research has only indicated that is not possible at this time.

      TIA

      Rob- Adriana's boyfriend

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    • Replies
        Bubbles
        Participant

          Hi Rob,

          Sorry Adriana's tumors did not respond like you hoped, but your treatment plan sounds fine enough.  My only thoughts are that I've not seen Merck or insurance companies allow patients to take Keytruda for free or with insurance as payment ever since it was FDA approved as a second line drug, to be used AFTER  the patient has failed ipi and then, if BRAF positive, BRAFi as well.  Absolutely insane, but there you have it.  But…I hope your doc wins.  If not, BRAFi next makes sense.  Here is a mish-mash of data I have put up about BRAF inhibitors.  Some of it I'm sure you are already well versed on, but there are some articles that address doing BRAF inhibitors purposefully to knock down the tumor burden and then jump quickly, before the tumors become unresponsive, to ipi in the case of the article noted….as well as how much better folks respond AND with fewer side effects, to combination BRAF/MEK…as well as how patients can indeed RE-respond to BRAFi after having had them previously.

          General BRAFi info:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

          Discussion of re-response:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-ways-to-use-braf-inhibitors-for.html

          Some of the latest BRAFi articles:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/all-things-brafilatest-articles.html

          Hope that helps and I wish you both my best.  Celeste

          Bubbles
          Participant

            Hi Rob,

            Sorry Adriana's tumors did not respond like you hoped, but your treatment plan sounds fine enough.  My only thoughts are that I've not seen Merck or insurance companies allow patients to take Keytruda for free or with insurance as payment ever since it was FDA approved as a second line drug, to be used AFTER  the patient has failed ipi and then, if BRAF positive, BRAFi as well.  Absolutely insane, but there you have it.  But…I hope your doc wins.  If not, BRAFi next makes sense.  Here is a mish-mash of data I have put up about BRAF inhibitors.  Some of it I'm sure you are already well versed on, but there are some articles that address doing BRAF inhibitors purposefully to knock down the tumor burden and then jump quickly, before the tumors become unresponsive, to ipi in the case of the article noted….as well as how much better folks respond AND with fewer side effects, to combination BRAF/MEK…as well as how patients can indeed RE-respond to BRAFi after having had them previously.

            General BRAFi info:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

            Discussion of re-response:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-ways-to-use-braf-inhibitors-for.html

            Some of the latest BRAFi articles:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/all-things-brafilatest-articles.html

            Hope that helps and I wish you both my best.  Celeste

            Bubbles
            Participant

              Hi Rob,

              Sorry Adriana's tumors did not respond like you hoped, but your treatment plan sounds fine enough.  My only thoughts are that I've not seen Merck or insurance companies allow patients to take Keytruda for free or with insurance as payment ever since it was FDA approved as a second line drug, to be used AFTER  the patient has failed ipi and then, if BRAF positive, BRAFi as well.  Absolutely insane, but there you have it.  But…I hope your doc wins.  If not, BRAFi next makes sense.  Here is a mish-mash of data I have put up about BRAF inhibitors.  Some of it I'm sure you are already well versed on, but there are some articles that address doing BRAF inhibitors purposefully to knock down the tumor burden and then jump quickly, before the tumors become unresponsive, to ipi in the case of the article noted….as well as how much better folks respond AND with fewer side effects, to combination BRAF/MEK…as well as how patients can indeed RE-respond to BRAFi after having had them previously.

              General BRAFi info:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html

              Discussion of re-response:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-ways-to-use-braf-inhibitors-for.html

              Some of the latest BRAFi articles:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/all-things-brafilatest-articles.html

              Hope that helps and I wish you both my best.  Celeste

                Cooper
                Participant

                  My doc told me that taf/mek was best proven so far, with the mek helping delay recur which it has for me.  Zel alone is shorter lived.  Some folks he said have been on the taf/mek for a few years now.  If you are not responding to the zel you normally wouldn't switch to taf/mek because you are braf resistant.  I would ask lots of questions!

                  Cooper
                  Participant

                    My doc told me that taf/mek was best proven so far, with the mek helping delay recur which it has for me.  Zel alone is shorter lived.  Some folks he said have been on the taf/mek for a few years now.  If you are not responding to the zel you normally wouldn't switch to taf/mek because you are braf resistant.  I would ask lots of questions!

                    Cooper
                    Participant

                      My doc told me that taf/mek was best proven so far, with the mek helping delay recur which it has for me.  Zel alone is shorter lived.  Some folks he said have been on the taf/mek for a few years now.  If you are not responding to the zel you normally wouldn't switch to taf/mek because you are braf resistant.  I would ask lots of questions!

                    Tim–MRF
                    Guest
                      Rob:

                      I am sorry to hear about Adriana’s situation. I am sitting in a science meeting at the annual meeting of the Society for Melanoma Research. A number of sessions this morning addressed this issue.

                      The problem is that no one knows the answer. Studies suggest that BRAF/MEK inhibition encourages an immune response. Some believe this recommends using that approach with immunotherapy such as Keytruda, or at least giving Keytruda shortly after BRAF/MEK. Also a major factor in long term response to BRAF is low tumor burden.

                      On the other hand, the best numbers of any trial have been in combining IPI with anti-PD1.

                      I don’t know how much this helps. I don’t see any reason to prevent either approach. Which one to take is up tobyou (and Adriana).

                      Tim–MRF
                      Guest
                        Rob:

                        I am sorry to hear about Adriana’s situation. I am sitting in a science meeting at the annual meeting of the Society for Melanoma Research. A number of sessions this morning addressed this issue.

                        The problem is that no one knows the answer. Studies suggest that BRAF/MEK inhibition encourages an immune response. Some believe this recommends using that approach with immunotherapy such as Keytruda, or at least giving Keytruda shortly after BRAF/MEK. Also a major factor in long term response to BRAF is low tumor burden.

                        On the other hand, the best numbers of any trial have been in combining IPI with anti-PD1.

                        I don’t know how much this helps. I don’t see any reason to prevent either approach. Which one to take is up tobyou (and Adriana).

                        Tim–MRF
                        Guest
                          Rob:

                          I am sorry to hear about Adriana’s situation. I am sitting in a science meeting at the annual meeting of the Society for Melanoma Research. A number of sessions this morning addressed this issue.

                          The problem is that no one knows the answer. Studies suggest that BRAF/MEK inhibition encourages an immune response. Some believe this recommends using that approach with immunotherapy such as Keytruda, or at least giving Keytruda shortly after BRAF/MEK. Also a major factor in long term response to BRAF is low tumor burden.

                          On the other hand, the best numbers of any trial have been in combining IPI with anti-PD1.

                          I don’t know how much this helps. I don’t see any reason to prevent either approach. Which one to take is up tobyou (and Adriana).

                          Tim–MRF
                          Guest
                            Rob:

                            I am sorry to hear about Adriana’s situation. I am sitting in a science meeting at the annual meeting of the Society for Melanoma Research. A number of sessions this morning addressed this issue.

                            The problem is that no one knows the answer. Studies suggest that BRAF/MEK inhibition encourages an immune response. Some believe this recommends using that approach with immunotherapy such as Keytruda, or at least giving Keytruda shortly after BRAF/MEK. Also a major factor in long term response to BRAF is low tumor burden.

                            On the other hand, the best numbers of any trial have been in combining IPI with anti-PD1.

                            I don’t know how much this helps. I don’t see any reason to prevent either approach. Which one to take is up tobyou (and Adriana).

                            Tim–MRF
                            Guest
                              Rob:

                              I am sorry to hear about Adriana’s situation. I am sitting in a science meeting at the annual meeting of the Society for Melanoma Research. A number of sessions this morning addressed this issue.

                              The problem is that no one knows the answer. Studies suggest that BRAF/MEK inhibition encourages an immune response. Some believe this recommends using that approach with immunotherapy such as Keytruda, or at least giving Keytruda shortly after BRAF/MEK. Also a major factor in long term response to BRAF is low tumor burden.

                              On the other hand, the best numbers of any trial have been in combining IPI with anti-PD1.

                              I don’t know how much this helps. I don’t see any reason to prevent either approach. Which one to take is up tobyou (and Adriana).

                              Tim–MRF
                              Guest
                                Rob:

                                I am sorry to hear about Adriana’s situation. I am sitting in a science meeting at the annual meeting of the Society for Melanoma Research. A number of sessions this morning addressed this issue.

                                The problem is that no one knows the answer. Studies suggest that BRAF/MEK inhibition encourages an immune response. Some believe this recommends using that approach with immunotherapy such as Keytruda, or at least giving Keytruda shortly after BRAF/MEK. Also a major factor in long term response to BRAF is low tumor burden.

                                On the other hand, the best numbers of any trial have been in combining IPI with anti-PD1.

                                I don’t know how much this helps. I don’t see any reason to prevent either approach. Which one to take is up tobyou (and Adriana).

                                Tim–MRF
                                Guest

                                  Quick update.

                                  I was able to discuss Adriana's situation with to world-class melanoma doctors. Of course they don't have the full information or her medical records, but in concept they agree with the move to Keytruda and the idea of holding back on BRAF/MEK for use if necessary later.

                                   

                                  Hope this helps.

                                   

                                  Tim–MRF

                                  Tim–MRF
                                  Guest

                                    Quick update.

                                    I was able to discuss Adriana's situation with to world-class melanoma doctors. Of course they don't have the full information or her medical records, but in concept they agree with the move to Keytruda and the idea of holding back on BRAF/MEK for use if necessary later.

                                     

                                    Hope this helps.

                                     

                                    Tim–MRF

                                    Tim–MRF
                                    Guest

                                      Quick update.

                                      I was able to discuss Adriana's situation with to world-class melanoma doctors. Of course they don't have the full information or her medical records, but in concept they agree with the move to Keytruda and the idea of holding back on BRAF/MEK for use if necessary later.

                                       

                                      Hope this helps.

                                       

                                      Tim–MRF

                                        adriana cooper
                                        Participant

                                          Celeste, Anon and Tim thanks for your insight. A little reassurance goes a long way in this journey of multiple paths. Thanks for the additional info resources.

                                          BTW Tim, we hope you again have a symposium at SCCA this spring and look forward to meeting you again. We were just at the beginning of this phase at last year's event.

                                          Best wishes to all fighting this battle.

                                          Rob and Adriana

                                          adriana cooper
                                          Participant

                                            Celeste, Anon and Tim thanks for your insight. A little reassurance goes a long way in this journey of multiple paths. Thanks for the additional info resources.

                                            BTW Tim, we hope you again have a symposium at SCCA this spring and look forward to meeting you again. We were just at the beginning of this phase at last year's event.

                                            Best wishes to all fighting this battle.

                                            Rob and Adriana

                                            adriana cooper
                                            Participant

                                              Celeste, Anon and Tim thanks for your insight. A little reassurance goes a long way in this journey of multiple paths. Thanks for the additional info resources.

                                              BTW Tim, we hope you again have a symposium at SCCA this spring and look forward to meeting you again. We were just at the beginning of this phase at last year's event.

                                              Best wishes to all fighting this battle.

                                              Rob and Adriana

                                            RJoeyB
                                            Participant

                                              Rob,

                                              Agreed with all that's been posted here, I think it's a good plan.  I've yet to need BRAF/MEK or anti-PD-1, but have done ipi (among other immunotherapies, surgeries, radiation, etc.) — however, I try to keep on top of the latest in order to have "plan B" (or "C" or "D") should the need arise, so it's something I discuss regularly with my doctors.

                                              In a short time we've gone from few options for advanced melanoma to multiple new approaches, and within those treatments, competition (Zelboraf vs. Tafinlar, Keytruda vs. Opdivo, etc.), which is great, but it also creates an extra layer of complexity for us patients.  Instead of just basing treatment decisions on what's medically best, we now also have to navigate additional regulatory and insurance rules about what we can use and when.

                                              It sounds like that's what your doctor is trying to do (navigating both the medical and regulatory), but the plan souns good.  I just saw a new study comparing the Tafinlar/Mekinist combination to Zelboraf alone and the combination appears to be more effective.  Additionally, they aren't mutually exclusive, i.e. how someone responds (or doesn't) to one doesn't necessarily indicate how someone will respond to the other.  Since Adriana is BRAF-positive, she needs to try a BRAF inhibitor (and ipi — I know you know this already) before moving on to Keytruda, so Zelboraf now and if it works for a time, great.  If not, move on to Keytruda, leaving another good option, the Tafinlar/Mekinist combination available as yet another option.

                                              Joe

                                               

                                              RJoeyB
                                              Participant

                                                Rob,

                                                Agreed with all that's been posted here, I think it's a good plan.  I've yet to need BRAF/MEK or anti-PD-1, but have done ipi (among other immunotherapies, surgeries, radiation, etc.) — however, I try to keep on top of the latest in order to have "plan B" (or "C" or "D") should the need arise, so it's something I discuss regularly with my doctors.

                                                In a short time we've gone from few options for advanced melanoma to multiple new approaches, and within those treatments, competition (Zelboraf vs. Tafinlar, Keytruda vs. Opdivo, etc.), which is great, but it also creates an extra layer of complexity for us patients.  Instead of just basing treatment decisions on what's medically best, we now also have to navigate additional regulatory and insurance rules about what we can use and when.

                                                It sounds like that's what your doctor is trying to do (navigating both the medical and regulatory), but the plan souns good.  I just saw a new study comparing the Tafinlar/Mekinist combination to Zelboraf alone and the combination appears to be more effective.  Additionally, they aren't mutually exclusive, i.e. how someone responds (or doesn't) to one doesn't necessarily indicate how someone will respond to the other.  Since Adriana is BRAF-positive, she needs to try a BRAF inhibitor (and ipi — I know you know this already) before moving on to Keytruda, so Zelboraf now and if it works for a time, great.  If not, move on to Keytruda, leaving another good option, the Tafinlar/Mekinist combination available as yet another option.

                                                Joe

                                                 

                                                RJoeyB
                                                Participant

                                                  Rob,

                                                  Agreed with all that's been posted here, I think it's a good plan.  I've yet to need BRAF/MEK or anti-PD-1, but have done ipi (among other immunotherapies, surgeries, radiation, etc.) — however, I try to keep on top of the latest in order to have "plan B" (or "C" or "D") should the need arise, so it's something I discuss regularly with my doctors.

                                                  In a short time we've gone from few options for advanced melanoma to multiple new approaches, and within those treatments, competition (Zelboraf vs. Tafinlar, Keytruda vs. Opdivo, etc.), which is great, but it also creates an extra layer of complexity for us patients.  Instead of just basing treatment decisions on what's medically best, we now also have to navigate additional regulatory and insurance rules about what we can use and when.

                                                  It sounds like that's what your doctor is trying to do (navigating both the medical and regulatory), but the plan souns good.  I just saw a new study comparing the Tafinlar/Mekinist combination to Zelboraf alone and the combination appears to be more effective.  Additionally, they aren't mutually exclusive, i.e. how someone responds (or doesn't) to one doesn't necessarily indicate how someone will respond to the other.  Since Adriana is BRAF-positive, she needs to try a BRAF inhibitor (and ipi — I know you know this already) before moving on to Keytruda, so Zelboraf now and if it works for a time, great.  If not, move on to Keytruda, leaving another good option, the Tafinlar/Mekinist combination available as yet another option.

                                                  Joe

                                                   

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