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Help. Not qualified for Ipi/Nivo trial
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Help. Not qualified for Ipi/Nivo trial

› Forums › General Melanoma Community › Help. Not qualified for Ipi/Nivo trial

  • Post
    • January 2, 2018 at 9:19 pm
    kabc
    Participant

      I was turned down for Ipi/Nivo trial here in Ontario because the margins from my head/neck WLE were positve. Onc wants me to start radiation and then Tafinlar/Mekinist.

      I am looking for any advice and experience that anyone with head/neck has had with this combination.

      My head has not even healed yet and all this is happening fast.

      Thanks to anyone who may answer.  I am feeling a quite a loss not getting into trial.

       

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    • Replies
        • January 2, 2018 at 9:43 pm
        ed williams
        Participant

          Hi KABC, are you stage 3 at this point? and are the Targeted therapy drugs a trial as well?

            • January 2, 2018 at 11:38 pm
            kabc
            Participant

              I am stage 3b. Targeted drugs would be given on compassionate application, not a trial

              • January 3, 2018 at 1:54 am
              ed williams
              Participant

                You might find this information from two weeks ago helpful. Best wishes!!!Ed. http://www.onclive.com/web-exclusives/fda-grants-adjuvant-dabrafenibtrametinib-priority-review-for-braf-melanoma

                • January 3, 2018 at 2:06 am
                kabc
                Participant

                  Thank you so much Ed. I really didn't know where to begin.  I came across this forum when I first had mole on head removed and then SLNB 2016. Nodes were all negative.  Fall of 2017 small lump appeared.

                  I appreciate all the information provided on this forum. People are very kind and compassionate.

                  Thanks K

                   

                  • January 3, 2018 at 7:24 pm
                  obtu.bt
                  Participant
                    Hi Kabc,
                    Just wanted to know if you have any Radiotherapy or immunotherapy after SLNB?
                    • January 5, 2018 at 5:11 pm
                    kabc
                    Participant

                      I did not have either.  It was watch and wait because margins were clear on original excision and then lymph nodes were also clear.

                      • January 3, 2018 at 7:26 pm
                      obtu.bt
                      Participant
                        Hi Ed,
                        It is quite interesting study. So if patient is braf + would it be better to go to opdivo or taf/mek combo? Any comparison?
                        • January 4, 2018 at 12:18 am
                        ed williams
                        Participant

                          That would be to easy!!!! Big pharma wants to get drugs to market, so a comparison would delay and might be bad for business. In the long run the data will show which is the better way to go, but for now getting access and funding is the hard part. I have heard leading oncologist talk highly about both Immunotherapy check point inhibitors and targeted therapy drugs. I don't think there is any solid data to sway opinion either way at this point. Best wishes!!!!Ed

                        • January 4, 2018 at 1:31 am
                        Bubbles
                        Participant

                          I don't know if this applies in Canada, but in the states Nivo as a single agent has been approved for adjuvant treatment:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/12/about-damn-time-opdivo-approved-as.html  

                          Here is a link to a zillion posts about adjuvant care…including BRAF/MEK:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant  

                          Hope this helps.  I wish you well. Celeste

                           

                            • January 4, 2018 at 5:26 pm
                            sister of patient
                            Participant

                              So far (I think), Ipi as a monotherapy is the only one approved, in Ontario, as an adjuvant treatment for Stage 3. Hoping for Nivo's approval within the next six – 12 months, as we do seem to "follow suit."

                              Barb

                            • January 4, 2018 at 9:47 pm
                            Calynda
                            Participant

                              This time last year I was supposed to go on ipi/nivo, but I had some complications coming down off my steroids I had been on during brain radiation.  I started Tafinlar/Mekenist and had a few elevated liver numbers.  We adjusted the doses and it’s worked great so far.  It’s seems to be getting less effective, but we knew when we started that it would have a maximum effective time…. I have a laser ablation scheduled Tuesday to take care of one lesion in my head that’s become problematic, but everything else around my body has improved in the drug combo.  We’re planning to switch me over to the combo immunotherapy after I heal up from surgery.

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