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From stage IIIa to IV

Forums General Melanoma Community From stage IIIa to IV

  • Post
    dmturner
    Participant

      Yep, my PET scan lit up.  Had the PET scan right before I was going to start Keytruda the next day.  The lymph nodes in the abdomen, pelvic, collar bone, close to primary and right groin.

      The options:

      Double-blind combo trial with Keytruda and epacadosat/placebo.  Or do Keytruda alone.  Or do Opivido with Yervoy.  I have already did 3-10 mg of Yervoy before I had a reoccurence close to the primary and now that it spread.  So Yervoy did not work.

      The melanoma specialist said the Yervy with Opivido was the more aggressive approach.  I am really shying away from the trail since I have yet to be approved and it takes 4 weeks to even get started. 

      I now I feel like I haven't had any treatment since diagnosed in June '16 but the surgeries.  Now the doctor is on vacation. 

      Opinions.

      Thank you, Donna

       

    Viewing 11 reply threads
    • Replies
        jennunicorn
        Participant

          Sorry adjuvant Yervoy didn't work for you. Totally know the feeling since it didn't work for me either. I decided to do the Yervoy/Opdivo combo. Will have my 4th infusion of that on Thursday. My onc went over all my options and we both agreed that doing the combo made the most sense since it has the highest effectiveness rate of all the approved immunotherapy drugs. I asked about whether I would be excluded from trials in the future if I have already done 2 of the immunotherapy drugs, and she let me know that they are starting to open trials to everyone, not just drug naive, since a lot of the people that go into trials now have already tried approved drugs. So, once I knew that bit of info I was even more confident that giving the combo a try was a good place to start. Hopefully it's the last treatment I need too.

          All the best,

          jennunicorn
          Participant

            Sorry adjuvant Yervoy didn't work for you. Totally know the feeling since it didn't work for me either. I decided to do the Yervoy/Opdivo combo. Will have my 4th infusion of that on Thursday. My onc went over all my options and we both agreed that doing the combo made the most sense since it has the highest effectiveness rate of all the approved immunotherapy drugs. I asked about whether I would be excluded from trials in the future if I have already done 2 of the immunotherapy drugs, and she let me know that they are starting to open trials to everyone, not just drug naive, since a lot of the people that go into trials now have already tried approved drugs. So, once I knew that bit of info I was even more confident that giving the combo a try was a good place to start. Hopefully it's the last treatment I need too.

            All the best,

            jennunicorn
            Participant

              Sorry adjuvant Yervoy didn't work for you. Totally know the feeling since it didn't work for me either. I decided to do the Yervoy/Opdivo combo. Will have my 4th infusion of that on Thursday. My onc went over all my options and we both agreed that doing the combo made the most sense since it has the highest effectiveness rate of all the approved immunotherapy drugs. I asked about whether I would be excluded from trials in the future if I have already done 2 of the immunotherapy drugs, and she let me know that they are starting to open trials to everyone, not just drug naive, since a lot of the people that go into trials now have already tried approved drugs. So, once I knew that bit of info I was even more confident that giving the combo a try was a good place to start. Hopefully it's the last treatment I need too.

              All the best,

              Jahendry12
              Participant

                Did they do a biopsy on one of them to confirm it is indeed melanoma?  

                Jahendry12
                Participant

                  Did they do a biopsy on one of them to confirm it is indeed melanoma?  

                  Jahendry12
                  Participant

                    Did they do a biopsy on one of them to confirm it is indeed melanoma?  

                      dmturner
                      Participant

                        Yes, it was positive for melanoma and I had the WLE on Nov. 1, with skin graft.   It is slowly healing.  I also, had another biospy last Wednesday via my dermatoligst and will get those results in about a week now.

                        dmturner
                        Participant

                          Yes, it was positive for melanoma and I had the WLE on Nov. 1, with skin graft.   It is slowly healing.  I also, had another biospy last Wednesday via my dermatoligst and will get those results in about a week now.

                          dmturner
                          Participant

                            Yes, it was positive for melanoma and I had the WLE on Nov. 1, with skin graft.   It is slowly healing.  I also, had another biospy last Wednesday via my dermatoligst and will get those results in about a week now.

                          debwray
                          Participant

                            Hi Donna,

                            Sorry to hear your latest news. Both options sound reasonable choices and can see the attractions of starting treatment sooner than later .

                            A PD1- nivo or Keytruda sounds like a given- in the trial you may or may not get the epacadosat- but with ipi nivo you would know for sure you are attacking the melanoma by revving up the immune system  with ipi AND helping it to be more vunerable to attack via the nivo taking away its ability to hide.  Sounds like your docs favour this approach as it probably has the best proven statistical response- and you can get it started quickly – always good for mental health- and the docs are getting better at dealing with side effects due to experience ?

                            Keytruda with the epacadosat also seems good- but you might have only Keytruda in one leg of the trial which would be less good if your disease does not have much PD1 expression- and the tests for this are not yet reliable enough to inform choices pretreatment- or what is a sensible level to act as cut off…

                            Do you know your BRAF status ? as this would offer other choices if not BRAF wild type ?

                            I'm two doses in to Ipi Nivo but am on steroids and treatment pause due to liver enzymes spiking when treatment three was due but feel it is having impact. Scan at end of Jan will tell more…seems like side effects are very variable between individuals. I would listen to your docs advice and then just go with what feels right for you.

                            Hope your doc is back from hols soon and you can get going with the hoop jumping for the trial or ipi/nivo. 

                            Best wishes

                            Deb

                             

                             

                             

                             

                            debwray
                            Participant

                              Hi Donna,

                              Sorry to hear your latest news. Both options sound reasonable choices and can see the attractions of starting treatment sooner than later .

                              A PD1- nivo or Keytruda sounds like a given- in the trial you may or may not get the epacadosat- but with ipi nivo you would know for sure you are attacking the melanoma by revving up the immune system  with ipi AND helping it to be more vunerable to attack via the nivo taking away its ability to hide.  Sounds like your docs favour this approach as it probably has the best proven statistical response- and you can get it started quickly – always good for mental health- and the docs are getting better at dealing with side effects due to experience ?

                              Keytruda with the epacadosat also seems good- but you might have only Keytruda in one leg of the trial which would be less good if your disease does not have much PD1 expression- and the tests for this are not yet reliable enough to inform choices pretreatment- or what is a sensible level to act as cut off…

                              Do you know your BRAF status ? as this would offer other choices if not BRAF wild type ?

                              I'm two doses in to Ipi Nivo but am on steroids and treatment pause due to liver enzymes spiking when treatment three was due but feel it is having impact. Scan at end of Jan will tell more…seems like side effects are very variable between individuals. I would listen to your docs advice and then just go with what feels right for you.

                              Hope your doc is back from hols soon and you can get going with the hoop jumping for the trial or ipi/nivo. 

                              Best wishes

                              Deb

                               

                               

                               

                               

                                dmturner
                                Participant

                                  I am BRAF negative.  But they are suppose to testing for other genetics. 

                                  Thank you all for your insights. 

                                  I just wished I could of got at least one treatment of whatever done before the end of the year.

                                  dmturner
                                  Participant

                                    I am BRAF negative.  But they are suppose to testing for other genetics. 

                                    Thank you all for your insights. 

                                    I just wished I could of got at least one treatment of whatever done before the end of the year.

                                    dmturner
                                    Participant

                                      I am BRAF negative.  But they are suppose to testing for other genetics. 

                                      Thank you all for your insights. 

                                      I just wished I could of got at least one treatment of whatever done before the end of the year.

                                    debwray
                                    Participant

                                      Hi Donna,

                                      Sorry to hear your latest news. Both options sound reasonable choices and can see the attractions of starting treatment sooner than later .

                                      A PD1- nivo or Keytruda sounds like a given- in the trial you may or may not get the epacadosat- but with ipi nivo you would know for sure you are attacking the melanoma by revving up the immune system  with ipi AND helping it to be more vunerable to attack via the nivo taking away its ability to hide.  Sounds like your docs favour this approach as it probably has the best proven statistical response- and you can get it started quickly – always good for mental health- and the docs are getting better at dealing with side effects due to experience ?

                                      Keytruda with the epacadosat also seems good- but you might have only Keytruda in one leg of the trial which would be less good if your disease does not have much PD1 expression- and the tests for this are not yet reliable enough to inform choices pretreatment- or what is a sensible level to act as cut off…

                                      Do you know your BRAF status ? as this would offer other choices if not BRAF wild type ?

                                      I'm two doses in to Ipi Nivo but am on steroids and treatment pause due to liver enzymes spiking when treatment three was due but feel it is having impact. Scan at end of Jan will tell more…seems like side effects are very variable between individuals. I would listen to your docs advice and then just go with what feels right for you.

                                      Hope your doc is back from hols soon and you can get going with the hoop jumping for the trial or ipi/nivo. 

                                      Best wishes

                                      Deb

                                       

                                       

                                       

                                       

                                      dmturner
                                      Participant

                                        I had a skin check last week and the dermatoligist did a  biospy of a spot close to my primary/secondary on my right heel.  Got the call today it was positive.

                                        Called my melanoma oncologist and he is back.  He is putting in the order to do opivido/yervoy combo.  I do not want to wait for a trial.  I feel like I have not been fighting cause the Yervoy treatments did not work.  Waiting on insurance approval.  I don't know if we do WLE on this new spot or not.  I am just finally walking normal.

                                        Donna

                                        dmturner
                                        Participant

                                          I had a skin check last week and the dermatoligist did a  biospy of a spot close to my primary/secondary on my right heel.  Got the call today it was positive.

                                          Called my melanoma oncologist and he is back.  He is putting in the order to do opivido/yervoy combo.  I do not want to wait for a trial.  I feel like I have not been fighting cause the Yervoy treatments did not work.  Waiting on insurance approval.  I don't know if we do WLE on this new spot or not.  I am just finally walking normal.

                                          Donna

                                          dmturner
                                          Participant

                                            I had a skin check last week and the dermatoligist did a  biospy of a spot close to my primary/secondary on my right heel.  Got the call today it was positive.

                                            Called my melanoma oncologist and he is back.  He is putting in the order to do opivido/yervoy combo.  I do not want to wait for a trial.  I feel like I have not been fighting cause the Yervoy treatments did not work.  Waiting on insurance approval.  I don't know if we do WLE on this new spot or not.  I am just finally walking normal.

                                            Donna

                                              debwray
                                              Participant

                                                Aww Donna,

                                                Sorry to hear about the second spot on your heel. Think you need to listen to advice re WLE but get how frustrating it is to struggle with painful walking.

                                                Am convinced that the IPI nivo combo is doing something for me..besides the side effects. Blood results have changed and although ldh was higher for. the second infusion..above normal for the first time..it has reduced again recently but not yet back to normal levels. Am currently on steroiud taper and treatment hold after liver blood tests spiked . My melanoma area liver.. Became more tender after the first dose but that has now gone. One pigmented freckle became really itchy but that too is no longer a problem. Other pigmented bits of skin seemed to change co!our a bit..but am only sure of the ones I have images of.

                                                Bit like you I felt that I had not been fighting when I discovered I had been on the placebo wing of the stage 3 keytruda trial… But I did get close monitoring, get familiar with treatment routines and staff and so know the ropes and reporting side effects routines.

                                                Hope you get the treatment approved quickly and get things started. Even though you go from waiting to start to waiting for side effects mentally it feels good to be doing something to help your body fight.

                                                Will cross my fingers it does the trick for you and that the new year brings better news.

                                                Hugs

                                                Deb

                                                debwray
                                                Participant

                                                  Aww Donna,

                                                  Sorry to hear about the second spot on your heel. Think you need to listen to advice re WLE but get how frustrating it is to struggle with painful walking.

                                                  Am convinced that the IPI nivo combo is doing something for me..besides the side effects. Blood results have changed and although ldh was higher for. the second infusion..above normal for the first time..it has reduced again recently but not yet back to normal levels. Am currently on steroiud taper and treatment hold after liver blood tests spiked . My melanoma area liver.. Became more tender after the first dose but that has now gone. One pigmented freckle became really itchy but that too is no longer a problem. Other pigmented bits of skin seemed to change co!our a bit..but am only sure of the ones I have images of.

                                                  Bit like you I felt that I had not been fighting when I discovered I had been on the placebo wing of the stage 3 keytruda trial… But I did get close monitoring, get familiar with treatment routines and staff and so know the ropes and reporting side effects routines.

                                                  Hope you get the treatment approved quickly and get things started. Even though you go from waiting to start to waiting for side effects mentally it feels good to be doing something to help your body fight.

                                                  Will cross my fingers it does the trick for you and that the new year brings better news.

                                                  Hugs

                                                  Deb

                                                  dmturner
                                                  Participant

                                                    Thank you!  I am going in for my first combo infusion tomorrow.  I am pumped cause I do want to be doing something to this beast.  I am the bigger beast, tho!! 

                                                    Since, I didn't have hardly any if any side effects from the Yervoy.  I am more anxious in that regards.

                                                    Hugs, Donna

                                                    dmturner
                                                    Participant

                                                      Thank you!  I am going in for my first combo infusion tomorrow.  I am pumped cause I do want to be doing something to this beast.  I am the bigger beast, tho!! 

                                                      Since, I didn't have hardly any if any side effects from the Yervoy.  I am more anxious in that regards.

                                                      Hugs, Donna

                                                      dmturner
                                                      Participant

                                                        Thank you!  I am going in for my first combo infusion tomorrow.  I am pumped cause I do want to be doing something to this beast.  I am the bigger beast, tho!! 

                                                        Since, I didn't have hardly any if any side effects from the Yervoy.  I am more anxious in that regards.

                                                        Hugs, Donna

                                                        debwray
                                                        Participant

                                                          Aww Donna,

                                                          Sorry to hear about the second spot on your heel. Think you need to listen to advice re WLE but get how frustrating it is to struggle with painful walking.

                                                          Am convinced that the IPI nivo combo is doing something for me..besides the side effects. Blood results have changed and although ldh was higher for. the second infusion..above normal for the first time..it has reduced again recently but not yet back to normal levels. Am currently on steroiud taper and treatment hold after liver blood tests spiked . My melanoma area liver.. Became more tender after the first dose but that has now gone. One pigmented freckle became really itchy but that too is no longer a problem. Other pigmented bits of skin seemed to change co!our a bit..but am only sure of the ones I have images of.

                                                          Bit like you I felt that I had not been fighting when I discovered I had been on the placebo wing of the stage 3 keytruda trial… But I did get close monitoring, get familiar with treatment routines and staff and so know the ropes and reporting side effects routines.

                                                          Hope you get the treatment approved quickly and get things started. Even though you go from waiting to start to waiting for side effects mentally it feels good to be doing something to help your body fight.

                                                          Will cross my fingers it does the trick for you and that the new year brings better news.

                                                          Hugs

                                                          Deb

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