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Treatments

Forums General Melanoma Community Treatments

  • Post
    milerstar1
    Participant

      After 8 mos of being NED just had scan come back with multiple lesions on liver and lymph nodes in area also affected.  Was originally diagnosed in Aug 2011, did a year of interferon after left side ALND. In May 2014 it showed up in right side axillary node, so had complete ALND on that side as well.  Am pending MRI of brain to rule that out and PET scan next week to determine total presence.  Consulted with my own doc, a doc at KU med and Mayo and all 3 say combo therapy BRAF inhibitor and MEK inhibitor.  Was not given good prognosis if this doesn't work.  PLEASE, would like any input, suggestions possible from similar cases.  I have 3 kids and a wife at home.

    Viewing 14 reply threads
    • Replies
        democat
        Participant

          Have your doctors advaised against Ipi and Anti-PD1?

          democat
          Participant

            Have your doctors advaised against Ipi and Anti-PD1?

            democat
            Participant

              Have your doctors advaised against Ipi and Anti-PD1?

              Tim–MRF
              Guest

                As the previous reply suggests, several different treatment options exist. The two primary approaches are targeted therapy and immunotherapy.

                Targeted therapy goes into the tumor cells and shuts down the mutation that is driving tumor growth. About 40% of melanoma tumors have a mutated BRAF, and the BRAF drug targets that mutation. BRAF is a step in a metabolic pathway, and MEK is the next step down that path. Researchers have found that by inhibiting both BRAF and MEK at the same time they get stronger response, longer response, and fewer side effects. 

                Immunotherapy is designed to re-engage your immune system in the fight against melanoma. This can happen in a variety of ways. The drugs mentioned earlier, "ipi" and "anti-PD1" both impact a class of cells, called T cells, that are part of the immune system. These cells have several braking mechanisms, called checkpoints, that keep them from running amok and attacking the body. Tumors have the ability to activate these checkpoints and effectively hide from the T cells. The drug ipilimumab, or Yervoy, blocks a specific checkpoint called CTLA4. It was approved in 2011 and was the first new drug approved for metastatic melanoma in 13 years. Two different drugs, just approved in 2014, block a differnt checkpoint called PD1. They work better than ipi, but currently are only approved for use after ipi has been tried first and, if applicable, after the BRAF inhibitor has been tried.

                No-one knows if it is better to start with targeted therapy and move to immunotherapy, or to go in the reverse order. Starting with BRAF makes some sense if the ultimate goal is to get to using an anti-PD1 drug.

                All of this is to say that you have a lot of treatment options, and should not feel that you only have one shot at this.  Fighting metastatic melanoma is a war, not a battle. A good melanoma team will always have a plan A and plan B and plan C.

                Hope this helps.

                 

                Tim–MRF

                 

                 

                 

                  democat
                  Participant

                    Tim

                     

                    Thank you for one of the best plain-language summaries I have seen..

                     

                    Roxanne

                     

                     

                     

                     

                     

                     

                     

                     

                     

                     

                     

                     

                     

                     

                    democat
                    Participant

                      Tim

                       

                      Thank you for one of the best plain-language summaries I have seen..

                       

                      Roxanne

                       

                       

                       

                       

                       

                       

                       

                       

                       

                       

                       

                       

                       

                       

                      democat
                      Participant

                        Tim

                         

                        Thank you for one of the best plain-language summaries I have seen..

                         

                        Roxanne

                         

                         

                         

                         

                         

                         

                         

                         

                         

                         

                         

                         

                         

                         

                      Tim–MRF
                      Guest

                        As the previous reply suggests, several different treatment options exist. The two primary approaches are targeted therapy and immunotherapy.

                        Targeted therapy goes into the tumor cells and shuts down the mutation that is driving tumor growth. About 40% of melanoma tumors have a mutated BRAF, and the BRAF drug targets that mutation. BRAF is a step in a metabolic pathway, and MEK is the next step down that path. Researchers have found that by inhibiting both BRAF and MEK at the same time they get stronger response, longer response, and fewer side effects. 

                        Immunotherapy is designed to re-engage your immune system in the fight against melanoma. This can happen in a variety of ways. The drugs mentioned earlier, "ipi" and "anti-PD1" both impact a class of cells, called T cells, that are part of the immune system. These cells have several braking mechanisms, called checkpoints, that keep them from running amok and attacking the body. Tumors have the ability to activate these checkpoints and effectively hide from the T cells. The drug ipilimumab, or Yervoy, blocks a specific checkpoint called CTLA4. It was approved in 2011 and was the first new drug approved for metastatic melanoma in 13 years. Two different drugs, just approved in 2014, block a differnt checkpoint called PD1. They work better than ipi, but currently are only approved for use after ipi has been tried first and, if applicable, after the BRAF inhibitor has been tried.

                        No-one knows if it is better to start with targeted therapy and move to immunotherapy, or to go in the reverse order. Starting with BRAF makes some sense if the ultimate goal is to get to using an anti-PD1 drug.

                        All of this is to say that you have a lot of treatment options, and should not feel that you only have one shot at this.  Fighting metastatic melanoma is a war, not a battle. A good melanoma team will always have a plan A and plan B and plan C.

                        Hope this helps.

                         

                        Tim–MRF

                         

                         

                         

                        Tim–MRF
                        Guest

                          As the previous reply suggests, several different treatment options exist. The two primary approaches are targeted therapy and immunotherapy.

                          Targeted therapy goes into the tumor cells and shuts down the mutation that is driving tumor growth. About 40% of melanoma tumors have a mutated BRAF, and the BRAF drug targets that mutation. BRAF is a step in a metabolic pathway, and MEK is the next step down that path. Researchers have found that by inhibiting both BRAF and MEK at the same time they get stronger response, longer response, and fewer side effects. 

                          Immunotherapy is designed to re-engage your immune system in the fight against melanoma. This can happen in a variety of ways. The drugs mentioned earlier, "ipi" and "anti-PD1" both impact a class of cells, called T cells, that are part of the immune system. These cells have several braking mechanisms, called checkpoints, that keep them from running amok and attacking the body. Tumors have the ability to activate these checkpoints and effectively hide from the T cells. The drug ipilimumab, or Yervoy, blocks a specific checkpoint called CTLA4. It was approved in 2011 and was the first new drug approved for metastatic melanoma in 13 years. Two different drugs, just approved in 2014, block a differnt checkpoint called PD1. They work better than ipi, but currently are only approved for use after ipi has been tried first and, if applicable, after the BRAF inhibitor has been tried.

                          No-one knows if it is better to start with targeted therapy and move to immunotherapy, or to go in the reverse order. Starting with BRAF makes some sense if the ultimate goal is to get to using an anti-PD1 drug.

                          All of this is to say that you have a lot of treatment options, and should not feel that you only have one shot at this.  Fighting metastatic melanoma is a war, not a battle. A good melanoma team will always have a plan A and plan B and plan C.

                          Hope this helps.

                           

                          Tim–MRF

                           

                           

                           

                          arthurjedi007
                          Participant

                            The braf mek combo is a good fda approved option. It was approved as a combo almost exactly a year ago. I was on it after 8 weeks and didn't work for me but I'm still here like Tim said fighting the war. When it works which is about 70% of the time I hear it is great.

                            In my opinion the combination of pd1 at the higher dose combined with ipi at the lower dose should prove to be a good immunotherapy combination and hopefully with less side affects. I believe it is still in trial at moffitt in Tampa. One thing to keep in mind is doing some treatments excludes you from others so if I were you I would go for that fourth opinion at moffitt. I got my second opinion at Mayo also for zelboraf cause the combo wasn't approved at the time which didn't work for me either. Now I'm on keytruda pd1 which has done great but some things are still growing. But the pd1 stuff on its own can be great too and is now fda approved. I remember Eva had it on her liver and other places and she did the braf combo and ipi and she got in the keytruda pd1 extended access trial shortly after me but for her after just four doses all her stuff shrank by at least 50% and more.

                            So basically you just gotta go with what your gut tells you. Fight it like a war not just a battle. Good luck to you.

                            Artie

                            arthurjedi007
                            Participant

                              The braf mek combo is a good fda approved option. It was approved as a combo almost exactly a year ago. I was on it after 8 weeks and didn't work for me but I'm still here like Tim said fighting the war. When it works which is about 70% of the time I hear it is great.

                              In my opinion the combination of pd1 at the higher dose combined with ipi at the lower dose should prove to be a good immunotherapy combination and hopefully with less side affects. I believe it is still in trial at moffitt in Tampa. One thing to keep in mind is doing some treatments excludes you from others so if I were you I would go for that fourth opinion at moffitt. I got my second opinion at Mayo also for zelboraf cause the combo wasn't approved at the time which didn't work for me either. Now I'm on keytruda pd1 which has done great but some things are still growing. But the pd1 stuff on its own can be great too and is now fda approved. I remember Eva had it on her liver and other places and she did the braf combo and ipi and she got in the keytruda pd1 extended access trial shortly after me but for her after just four doses all her stuff shrank by at least 50% and more.

                              So basically you just gotta go with what your gut tells you. Fight it like a war not just a battle. Good luck to you.

                              Artie

                              arthurjedi007
                              Participant

                                The braf mek combo is a good fda approved option. It was approved as a combo almost exactly a year ago. I was on it after 8 weeks and didn't work for me but I'm still here like Tim said fighting the war. When it works which is about 70% of the time I hear it is great.

                                In my opinion the combination of pd1 at the higher dose combined with ipi at the lower dose should prove to be a good immunotherapy combination and hopefully with less side affects. I believe it is still in trial at moffitt in Tampa. One thing to keep in mind is doing some treatments excludes you from others so if I were you I would go for that fourth opinion at moffitt. I got my second opinion at Mayo also for zelboraf cause the combo wasn't approved at the time which didn't work for me either. Now I'm on keytruda pd1 which has done great but some things are still growing. But the pd1 stuff on its own can be great too and is now fda approved. I remember Eva had it on her liver and other places and she did the braf combo and ipi and she got in the keytruda pd1 extended access trial shortly after me but for her after just four doses all her stuff shrank by at least 50% and more.

                                So basically you just gotta go with what your gut tells you. Fight it like a war not just a battle. Good luck to you.

                                Artie

                                milerstar1
                                Participant

                                  Thank you all for your help and quick response.  It is greatly appreciated.  I always need the reminder that this is a war and not a battle, just trying to wrap my head around all of it currently.  It looks as if my doctors are wanting to go the BRAF/MEK inhibitor combo, awaiting pharmacy contact.  I have also reached out to CTCA and MD Anderson to get 5th and 6th opinions on things which I hear never hurts.  I really appreciate the explanation of the treatments as it really helped to put it in plain english.  Will keep ya'll informed on my progress and would love to hear of your continued success as well.  Thank you again!!

                                  milerstar1
                                  Participant

                                    Thank you all for your help and quick response.  It is greatly appreciated.  I always need the reminder that this is a war and not a battle, just trying to wrap my head around all of it currently.  It looks as if my doctors are wanting to go the BRAF/MEK inhibitor combo, awaiting pharmacy contact.  I have also reached out to CTCA and MD Anderson to get 5th and 6th opinions on things which I hear never hurts.  I really appreciate the explanation of the treatments as it really helped to put it in plain english.  Will keep ya'll informed on my progress and would love to hear of your continued success as well.  Thank you again!!

                                    milerstar1
                                    Participant

                                      Thank you all for your help and quick response.  It is greatly appreciated.  I always need the reminder that this is a war and not a battle, just trying to wrap my head around all of it currently.  It looks as if my doctors are wanting to go the BRAF/MEK inhibitor combo, awaiting pharmacy contact.  I have also reached out to CTCA and MD Anderson to get 5th and 6th opinions on things which I hear never hurts.  I really appreciate the explanation of the treatments as it really helped to put it in plain english.  Will keep ya'll informed on my progress and would love to hear of your continued success as well.  Thank you again!!

                                      milerstar1
                                      Participant

                                        Thank you all for your help and quick response.  It is greatly appreciated.  I always need the reminder that this is a war and not a battle, just trying to wrap my head around all of it currently.  It looks as if my doctors are wanting to go the BRAF/MEK inhibitor combo, awaiting pharmacy contact.  I have also reached out to CTCA and MD Anderson to get 5th and 6th opinions on things which I hear never hurts.  I really appreciate the explanation of the treatments as it really helped to put it in plain english.  Will keep ya'll informed on my progress and would love to hear of your continued success as well.  Thank you again!!

                                        milerstar1
                                        Participant

                                          Thank you all for your help and quick response.  It is greatly appreciated.  I always need the reminder that this is a war and not a battle, just trying to wrap my head around all of it currently.  It looks as if my doctors are wanting to go the BRAF/MEK inhibitor combo, awaiting pharmacy contact.  I have also reached out to CTCA and MD Anderson to get 5th and 6th opinions on things which I hear never hurts.  I really appreciate the explanation of the treatments as it really helped to put it in plain english.  Will keep ya'll informed on my progress and would love to hear of your continued success as well.  Thank you again!!

                                          milerstar1
                                          Participant

                                            Thank you all for your help and quick response.  It is greatly appreciated.  I always need the reminder that this is a war and not a battle, just trying to wrap my head around all of it currently.  It looks as if my doctors are wanting to go the BRAF/MEK inhibitor combo, awaiting pharmacy contact.  I have also reached out to CTCA and MD Anderson to get 5th and 6th opinions on things which I hear never hurts.  I really appreciate the explanation of the treatments as it really helped to put it in plain english.  Will keep ya'll informed on my progress and would love to hear of your continued success as well.  Thank you again!!

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