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.

1st scan after starting pembro/next steps

Forums General Melanoma Community 1st scan after starting pembro/next steps

  • Post
    Spl25
    Participant

      I'm a male, 30 yo. Diagnosed in July-  stage 4 w multiple mets to bone, liver lungs and spleen. largest tumors are 2-3cm. I've been on pembro since august 4, and have my first ct/MRI coming up. If it shows progression of disease, is the next logical step ipi/nivo? Fairly certain I'm braf mutated. If I'd like to explore clinical trials/travel to MD Andersen etc, should I pause treatment to do so? Or jump right into whatever my doc here (a Midwest NCI research Hospital) recommends? Perhaps they have their reasons for doing so, but my doctor has been pretty opaque about what they will do next. 

    Viewing 8 reply threads
    • Replies
        BrianP
        Participant

          Sorry you are here Spl25.  I'll throw out some random thoughts.

          Is ipi/nivo the next logical step?  It's definitely a strong consideration.  It would be on my short list if I were in your shoes.

          Being Braf positive is a good thing for you.  As you may know Taf/Mek combo is very effective against Braf positive melanoma but usually the benefit isn't durable.  Some have used the Taf/Mek as a bridge to another immunotherapy treatment when things have gotten bad.

          I've always felt like it's good to have a plan B and even plan C in mind so you aren't caught off guard.  I would have this conversation with your doctor.  How familiar are you with clinicaltrials.org?  Do you know that MRF has a free clinical trial finder service?  You are starting to see several trials available to patients who have failed a anti-PD1 so you may be able to find one within driving distance to your location.

          I had my first trip to MDA last month.  It is an amazing place for clinical trials.  They have tons of stuff going on there.  I have always been a proponent to "getting on the books" at a place like MDA.  It takes a lot of effort and more importantly time to get new appointments at places like that.  Once you are seen there making follow up appointments is a piece of cake.  In that regard I think it would be good for you to head down there but I wouldn't think it's necessary to pause your current treatment to do so. 

          Best of luck on your upcoming scan.  Hopefully you will never need a plan B.

          Brian

           

            Spl25
            Participant

              Appreciate it Brian – I'm a fan of planning for contingencies too! MDA says they can see me fairly soon. It probably makes sense to do that regardless of how scans go. I really wish someone would test tumors to see if I'm generating enough TILs that checkpoint blockade makes sense going forward. 

              Spl25
              Participant

                Appreciate it Brian – I'm a fan of planning for contingencies too! MDA says they can see me fairly soon. It probably makes sense to do that regardless of how scans go. I really wish someone would test tumors to see if I'm generating enough TILs that checkpoint blockade makes sense going forward. 

                Spl25
                Participant

                  Appreciate it Brian – I'm a fan of planning for contingencies too! MDA says they can see me fairly soon. It probably makes sense to do that regardless of how scans go. I really wish someone would test tumors to see if I'm generating enough TILs that checkpoint blockade makes sense going forward. 

                BrianP
                Participant

                  Sorry you are here Spl25.  I'll throw out some random thoughts.

                  Is ipi/nivo the next logical step?  It's definitely a strong consideration.  It would be on my short list if I were in your shoes.

                  Being Braf positive is a good thing for you.  As you may know Taf/Mek combo is very effective against Braf positive melanoma but usually the benefit isn't durable.  Some have used the Taf/Mek as a bridge to another immunotherapy treatment when things have gotten bad.

                  I've always felt like it's good to have a plan B and even plan C in mind so you aren't caught off guard.  I would have this conversation with your doctor.  How familiar are you with clinicaltrials.org?  Do you know that MRF has a free clinical trial finder service?  You are starting to see several trials available to patients who have failed a anti-PD1 so you may be able to find one within driving distance to your location.

                  I had my first trip to MDA last month.  It is an amazing place for clinical trials.  They have tons of stuff going on there.  I have always been a proponent to "getting on the books" at a place like MDA.  It takes a lot of effort and more importantly time to get new appointments at places like that.  Once you are seen there making follow up appointments is a piece of cake.  In that regard I think it would be good for you to head down there but I wouldn't think it's necessary to pause your current treatment to do so. 

                  Best of luck on your upcoming scan.  Hopefully you will never need a plan B.

                  Brian

                   

                  BrianP
                  Participant

                    Sorry you are here Spl25.  I'll throw out some random thoughts.

                    Is ipi/nivo the next logical step?  It's definitely a strong consideration.  It would be on my short list if I were in your shoes.

                    Being Braf positive is a good thing for you.  As you may know Taf/Mek combo is very effective against Braf positive melanoma but usually the benefit isn't durable.  Some have used the Taf/Mek as a bridge to another immunotherapy treatment when things have gotten bad.

                    I've always felt like it's good to have a plan B and even plan C in mind so you aren't caught off guard.  I would have this conversation with your doctor.  How familiar are you with clinicaltrials.org?  Do you know that MRF has a free clinical trial finder service?  You are starting to see several trials available to patients who have failed a anti-PD1 so you may be able to find one within driving distance to your location.

                    I had my first trip to MDA last month.  It is an amazing place for clinical trials.  They have tons of stuff going on there.  I have always been a proponent to "getting on the books" at a place like MDA.  It takes a lot of effort and more importantly time to get new appointments at places like that.  Once you are seen there making follow up appointments is a piece of cake.  In that regard I think it would be good for you to head down there but I wouldn't think it's necessary to pause your current treatment to do so. 

                    Best of luck on your upcoming scan.  Hopefully you will never need a plan B.

                    Brian

                     

                    Patrisa
                    Participant

                      I get that you want to have a plan in case pembro doesn't work, but hey, who says it won't?

                      I am a believer in pembro, my father has had great results with it ( as have many others), so maybe you will have them too!

                      Best of luck to you!

                      Love,

                       

                      Patrisa

                      Patrisa
                      Participant

                        I get that you want to have a plan in case pembro doesn't work, but hey, who says it won't?

                        I am a believer in pembro, my father has had great results with it ( as have many others), so maybe you will have them too!

                        Best of luck to you!

                        Love,

                         

                        Patrisa

                        Patrisa
                        Participant

                          I get that you want to have a plan in case pembro doesn't work, but hey, who says it won't?

                          I am a believer in pembro, my father has had great results with it ( as have many others), so maybe you will have them too!

                          Best of luck to you!

                          Love,

                           

                          Patrisa

                          Andrew1725
                          Participant

                            I'd be very careful about giving the current treatment enough time to work before considering a change to a trial (but no harm in looking at next steps ahead of time, I will be doing the same). I'm doing Ipi/Nivo combo and my understanding from the data that came out of that trial is that you need about 3 months to really start assessing responses, responses also are seen later and I don't think there are many rapid responses with pembro. I would really try to nail down with your docs what is their plan is for assessment of your response. Lots of things have to be considered of course including symptoms, tumor burden, braf status as you mentioned, but I'd hate to see you jumping ship on Pembro too soon for uncertain trial drugs. 

                            Andrew1725
                            Participant

                              I'd be very careful about giving the current treatment enough time to work before considering a change to a trial (but no harm in looking at next steps ahead of time, I will be doing the same). I'm doing Ipi/Nivo combo and my understanding from the data that came out of that trial is that you need about 3 months to really start assessing responses, responses also are seen later and I don't think there are many rapid responses with pembro. I would really try to nail down with your docs what is their plan is for assessment of your response. Lots of things have to be considered of course including symptoms, tumor burden, braf status as you mentioned, but I'd hate to see you jumping ship on Pembro too soon for uncertain trial drugs. 

                              Andrew1725
                              Participant

                                I'd be very careful about giving the current treatment enough time to work before considering a change to a trial (but no harm in looking at next steps ahead of time, I will be doing the same). I'm doing Ipi/Nivo combo and my understanding from the data that came out of that trial is that you need about 3 months to really start assessing responses, responses also are seen later and I don't think there are many rapid responses with pembro. I would really try to nail down with your docs what is their plan is for assessment of your response. Lots of things have to be considered of course including symptoms, tumor burden, braf status as you mentioned, but I'd hate to see you jumping ship on Pembro too soon for uncertain trial drugs. 

                            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.