MRF-Logo2019-Horizontal-RGB
Anti-pd-1
REGISTER
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.

Anti-pd-1

› Forums › Ocular Melanoma Community › Anti-pd-1

  • Post
    • December 2, 2011 at 6:58 pm
    Nan in Nebraska
    Participant

      I'm not sure this getting to the right forum as I see at the top "Create Off-Topic Forum Topic" even thought I'm under the Ocular Melanoma Forum. Hopefully this gets to the right place. Anyway-

      I'm not sure this getting to the right forum as I see at the top "Create Off-Topic Forum Topic" even thought I'm under the Ocular Melanoma Forum. Hopefully this gets to the right place. Anyway-

      I am so bummed! I've been watching AND waiting for the anti-pd-1 trials to open and see that they exclude uveal melanoma. I've had some success with Ipi/Yervoy, being stable since April after finishing the Ipi trial the end of Dec., 2010. I have what look to be highly necrotic lesions in my liver, but still am showing a 3 cm mass near my stomach and a few spots in my abdomin. I was so hoping to find a anti–pd-1 trial. I saw on the Melanoma International website that a highly respected doc said it was 3 time better than Yervoy with fewer side effects. What can be done to get the drug companies to accept us. Would it help to call them or have our docs plead our case? HOPEFULLY they will drop the exclusion. I'vebeen fighting this disease since 2001 and have done GM-CSF, abraxane, avastin, carboplatin, temodar, gleevec, MEK, Ipi/Yervoy. There just does not seem to be much else out there. Any thoughts or recommendations???

      Nan in Nebraska

    Viewing 2 reply threads
    • Replies
        • December 14, 2011 at 6:37 pm
        tmc
        Participant

          Nan, 

          There is an anti-PD-1 trial at the Moffitt Center in Tampa and there's no OM exclusion for that one. Contact [email protected]. The trial code is MCC 15400. 

          Unfortunately, they require a certain immune type, which I did not have, so I have to find another one. I was speaking with Dr. Keith Flaherty at Mass General about trials and he lamented the fact that many trials exclude OM, and he said there's really no reason for it. I don't know what the solution is to this. I'm continuing to look for other anti-PD-1 trials and MEK trials. I see that you tried MEK. What was the result? I did Ipi this summer and didn't have the same success you did. If I get any more info on anti-PD-1 trials, I'll post them here. 

          take care,

          Todd

            • December 15, 2011 at 5:46 am
            Sara – CURE OM
            Participant

              Dear Nan and Todd,

              You both raise a very critical point– the need to advocate for the INCLUSION of ocular melanoma patients in specific melanoma trials.  This is something we plan to highlight as our first advocacy concern for CURE OM to tackle.  We will keep you updated as we move ahead and make progress regarding this crucial concern, but we hear, and share, your concerns.

              WIth warm regards,

              Sara – CURE OM

              • December 17, 2011 at 4:44 pm
              Nan in Nebraska
              Participant

                Sara,

                Thank you! Your hard work and dedication are greatly appreciated. I hope you and Gregg are doing well.

                Best wishes and Happy Holidays.

                Nan in Nebraska

                • December 17, 2011 at 4:44 pm
                Nan in Nebraska
                Participant

                  Sara,

                  Thank you! Your hard work and dedication are greatly appreciated. I hope you and Gregg are doing well.

                  Best wishes and Happy Holidays.

                  Nan in Nebraska

                  • December 17, 2011 at 4:44 pm
                  Nan in Nebraska
                  Participant

                    Sara,

                    Thank you! Your hard work and dedication are greatly appreciated. I hope you and Gregg are doing well.

                    Best wishes and Happy Holidays.

                    Nan in Nebraska

                    • December 15, 2011 at 5:46 am
                    Sara – CURE OM
                    Participant

                      Dear Nan and Todd,

                      You both raise a very critical point– the need to advocate for the INCLUSION of ocular melanoma patients in specific melanoma trials.  This is something we plan to highlight as our first advocacy concern for CURE OM to tackle.  We will keep you updated as we move ahead and make progress regarding this crucial concern, but we hear, and share, your concerns.

                      WIth warm regards,

                      Sara – CURE OM

                      • December 15, 2011 at 5:46 am
                      Sara – CURE OM
                      Participant

                        Dear Nan and Todd,

                        You both raise a very critical point– the need to advocate for the INCLUSION of ocular melanoma patients in specific melanoma trials.  This is something we plan to highlight as our first advocacy concern for CURE OM to tackle.  We will keep you updated as we move ahead and make progress regarding this crucial concern, but we hear, and share, your concerns.

                        WIth warm regards,

                        Sara – CURE OM

                        • December 17, 2011 at 4:36 pm
                        Nan in Nebraska
                        Participant

                          Todd,

                          Thanks for the reply. The anti-PD-1 trial at Moffitt excludes if you've had IPI (CTLA-4). Curtec's trial excludes OM folks. I'm hoping that Merck/Shering Plough'supcoming anti-PD-1 will include OM AND folks who have previously received IPI.

                          I did a MEK trial at the Univ. of Colorado, but had to stop due to side effects to my remaining eye (left enucleated Jan., 2002). I had an impending central vein oclusion. Dr. Lewis said it wasn't worth losing my eyesight. The good news was that he felt it was working! So my advice, should you try a MEK inhibitor, is get a baseline eye exam and have them follow along very closely. As I understand, some of the other MEK trials did check eyes, but the company that I was with had never had a problem before.

                          Best wishes,

                          Nan in Nebaska

                          • December 17, 2011 at 4:36 pm
                          Nan in Nebraska
                          Participant

                            Todd,

                            Thanks for the reply. The anti-PD-1 trial at Moffitt excludes if you've had IPI (CTLA-4). Curtec's trial excludes OM folks. I'm hoping that Merck/Shering Plough'supcoming anti-PD-1 will include OM AND folks who have previously received IPI.

                            I did a MEK trial at the Univ. of Colorado, but had to stop due to side effects to my remaining eye (left enucleated Jan., 2002). I had an impending central vein oclusion. Dr. Lewis said it wasn't worth losing my eyesight. The good news was that he felt it was working! So my advice, should you try a MEK inhibitor, is get a baseline eye exam and have them follow along very closely. As I understand, some of the other MEK trials did check eyes, but the company that I was with had never had a problem before.

                            Best wishes,

                            Nan in Nebaska

                            • December 17, 2011 at 4:36 pm
                            Nan in Nebraska
                            Participant

                              Todd,

                              Thanks for the reply. The anti-PD-1 trial at Moffitt excludes if you've had IPI (CTLA-4). Curtec's trial excludes OM folks. I'm hoping that Merck/Shering Plough'supcoming anti-PD-1 will include OM AND folks who have previously received IPI.

                              I did a MEK trial at the Univ. of Colorado, but had to stop due to side effects to my remaining eye (left enucleated Jan., 2002). I had an impending central vein oclusion. Dr. Lewis said it wasn't worth losing my eyesight. The good news was that he felt it was working! So my advice, should you try a MEK inhibitor, is get a baseline eye exam and have them follow along very closely. As I understand, some of the other MEK trials did check eyes, but the company that I was with had never had a problem before.

                              Best wishes,

                              Nan in Nebaska

                            • December 14, 2011 at 6:37 pm
                            tmc
                            Participant

                              Nan, 

                              There is an anti-PD-1 trial at the Moffitt Center in Tampa and there's no OM exclusion for that one. Contact [email protected]. The trial code is MCC 15400. 

                              Unfortunately, they require a certain immune type, which I did not have, so I have to find another one. I was speaking with Dr. Keith Flaherty at Mass General about trials and he lamented the fact that many trials exclude OM, and he said there's really no reason for it. I don't know what the solution is to this. I'm continuing to look for other anti-PD-1 trials and MEK trials. I see that you tried MEK. What was the result? I did Ipi this summer and didn't have the same success you did. If I get any more info on anti-PD-1 trials, I'll post them here. 

                              take care,

                              Todd

                              • December 14, 2011 at 6:37 pm
                              tmc
                              Participant

                                Nan, 

                                There is an anti-PD-1 trial at the Moffitt Center in Tampa and there's no OM exclusion for that one. Contact [email protected]. The trial code is MCC 15400. 

                                Unfortunately, they require a certain immune type, which I did not have, so I have to find another one. I was speaking with Dr. Keith Flaherty at Mass General about trials and he lamented the fact that many trials exclude OM, and he said there's really no reason for it. I don't know what the solution is to this. I'm continuing to look for other anti-PD-1 trials and MEK trials. I see that you tried MEK. What was the result? I did Ipi this summer and didn't have the same success you did. If I get any more info on anti-PD-1 trials, I'll post them here. 

                                take care,

                                Todd

                            Viewing 2 reply threads

                            Tagged: 

                            • 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