The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Ipi and mucosal melanoma response rate.

Forums Mucosal Melanoma Community Ipi and mucosal melanoma response rate.

  • Post
    JerryfromFauq
    Participant

      I am looking for info on c-kit mucosal melaonma patients responses to Ipi.  Not much info found.  Here is one article.          The overall response rate by irRC in evaluable patients was 6.7% (2 of 30 patients; . By the mWHO criteria, at the time of the first radiographic assessment (approximately week 12), one CR, one PR, and five SD cases were observed. Twenty-three patients had PD at the time of the first scan. One patient classified as irSD was reclassified as having PD by mWHO given the appearance of new lesions. The overall response rate in evaluable patients by mWHO (6.7%, 2 of 30 patients) was identical to the response rate by the irRC.

         http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4063400/

      These numbers are scary.

    Viewing 8 reply threads
    • Replies
        tschmith
        Participant

          Hi Jerry!

              Just wondering how you're doing?

          Terrie

          tschmith
          Participant

            Hi Jerry!

                Just wondering how you're doing?

            Terrie

            tschmith
            Participant

              Hi Jerry!

                  Just wondering how you're doing?

              Terrie

              mary1233
              Participant

                Jerry – this issue has bothered me for so long. I am mucosal without a CKit mutation. IPI was suggested to me as a possible treatment option by my oncologist who was actually involved in the research that concluded the 6.7 efficacy rate.A week later the announcement came out and I asked him how that could be a viable treatment option. His response to me was that it was good if you were one of the 6.7%.(I now have a new oncologist.)

                Shortly after that the Patterson Institute in the UK came out with an announcement that they had completed a complete genetic testing of mucosal melanoma and concluded that it was completely different than cutaneous, which we already knew. They said in their announcement that it was actually genetically more similar to some other non-melanoma cancers but I have not been able to find out what those cancers are.

                I wrote to them trying to find out what those cancers are and to see if they were conducting any clinical trials based on what they found. An oncologist actually wrote back and said they did not have anything there that was not being done in the US. He did say that if I was CKit positive , I should try IPI and if not I should get into an anit-PD-1 trial. The only thing I could conclude is that ipi affects the CKit pathway and thus that would make one a member of the 6.7% club.

                There are a number of trials going on combining ipi and anti PD-1. If the time comes when I need further treatment, I want the plan to be to attack the cancer from as many directions as possible.

                Best wishes.

                Mary

                  Cooper
                  Participant

                    I guess I wouldl look at the 15% response rate with cutaneous melanoma and figure from there.  PD1 may be a better therapy for mucosal.

                    Cooper
                    Participant

                      I guess I wouldl look at the 15% response rate with cutaneous melanoma and figure from there.  PD1 may be a better therapy for mucosal.

                      Cooper
                      Participant

                        I guess I wouldl look at the 15% response rate with cutaneous melanoma and figure from there.  PD1 may be a better therapy for mucosal.

                      mary1233
                      Participant

                        Jerry – this issue has bothered me for so long. I am mucosal without a CKit mutation. IPI was suggested to me as a possible treatment option by my oncologist who was actually involved in the research that concluded the 6.7 efficacy rate.A week later the announcement came out and I asked him how that could be a viable treatment option. His response to me was that it was good if you were one of the 6.7%.(I now have a new oncologist.)

                        Shortly after that the Patterson Institute in the UK came out with an announcement that they had completed a complete genetic testing of mucosal melanoma and concluded that it was completely different than cutaneous, which we already knew. They said in their announcement that it was actually genetically more similar to some other non-melanoma cancers but I have not been able to find out what those cancers are.

                        I wrote to them trying to find out what those cancers are and to see if they were conducting any clinical trials based on what they found. An oncologist actually wrote back and said they did not have anything there that was not being done in the US. He did say that if I was CKit positive , I should try IPI and if not I should get into an anit-PD-1 trial. The only thing I could conclude is that ipi affects the CKit pathway and thus that would make one a member of the 6.7% club.

                        There are a number of trials going on combining ipi and anti PD-1. If the time comes when I need further treatment, I want the plan to be to attack the cancer from as many directions as possible.

                        Best wishes.

                        Mary

                        mary1233
                        Participant

                          Jerry – this issue has bothered me for so long. I am mucosal without a CKit mutation. IPI was suggested to me as a possible treatment option by my oncologist who was actually involved in the research that concluded the 6.7 efficacy rate.A week later the announcement came out and I asked him how that could be a viable treatment option. His response to me was that it was good if you were one of the 6.7%.(I now have a new oncologist.)

                          Shortly after that the Patterson Institute in the UK came out with an announcement that they had completed a complete genetic testing of mucosal melanoma and concluded that it was completely different than cutaneous, which we already knew. They said in their announcement that it was actually genetically more similar to some other non-melanoma cancers but I have not been able to find out what those cancers are.

                          I wrote to them trying to find out what those cancers are and to see if they were conducting any clinical trials based on what they found. An oncologist actually wrote back and said they did not have anything there that was not being done in the US. He did say that if I was CKit positive , I should try IPI and if not I should get into an anit-PD-1 trial. The only thing I could conclude is that ipi affects the CKit pathway and thus that would make one a member of the 6.7% club.

                          There are a number of trials going on combining ipi and anti PD-1. If the time comes when I need further treatment, I want the plan to be to attack the cancer from as many directions as possible.

                          Best wishes.

                          Mary

                          mary1233
                          Participant

                            jerry – Ecancer.org has Phase II results for an ipi and nivolumab trial for melanoma patients with and without the BRAF mutation. Very interesting how a combination therapy with ipi changes the picture completely.

                            Mary

                            mary1233
                            Participant

                              jerry – Ecancer.org has Phase II results for an ipi and nivolumab trial for melanoma patients with and without the BRAF mutation. Very interesting how a combination therapy with ipi changes the picture completely.

                              Mary

                              mary1233
                              Participant

                                jerry – Ecancer.org has Phase II results for an ipi and nivolumab trial for melanoma patients with and without the BRAF mutation. Very interesting how a combination therapy with ipi changes the picture completely.

                                Mary

                            Viewing 8 reply threads
                            • You must be logged in to reply to this topic.
                            About the MRF Patient Forum

                            The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                            The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                            Popular Topics