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pet scan-need advice

› Forums › General Melanoma Community › pet scan-need advice

  • Post
    • October 25, 2016 at 1:49 pm
    cf91
    Participant

      Long story short, diagnosed in 2014 Stage 4, done the interferon, IL-2, Ipi, opdivo and now in genetic  clinical study.   The dr is only doing ct scan (chest, abdomen & pelvis) & mri of face (mel spread to sinus cavity).  When I asked if they will be doing pet scan he said no, the study does not require it. My question is should I be concerned of not having a pet scan? Is the ct & mri enough since it is covering the areas where the tumors are?  Wanted to get opinions before I call my local onc and talk to him and see if he recommends pet scan.  Thanks for your advice.

    Viewing 17 reply threads
    • Replies
        • October 25, 2016 at 2:00 pm
        Johnjk04
        Participant

          From 2008 to 2012 I had the mel pretty wide spread. Was in the initial ippi / nivo trial.

          During all this time Yale New Haven performed zero PET scans. They rely on CAT and brain MRI for staging purposes.

          NED since August 2012.

          • October 25, 2016 at 2:00 pm
          Johnjk04
          Participant

            From 2008 to 2012 I had the mel pretty wide spread. Was in the initial ippi / nivo trial.

            During all this time Yale New Haven performed zero PET scans. They rely on CAT and brain MRI for staging purposes.

            NED since August 2012.

            • October 25, 2016 at 2:00 pm
            Johnjk04
            Participant

              From 2008 to 2012 I had the mel pretty wide spread. Was in the initial ippi / nivo trial.

              During all this time Yale New Haven performed zero PET scans. They rely on CAT and brain MRI for staging purposes.

              NED since August 2012.

              • October 25, 2016 at 2:56 pm
              cancersnewnormal
              Participant

                MRI is better clarity in the brain than PET. CT of chest/ab/pelvis will show location and size, but not the "glow" of uptake… aka… how strong the individual tumor activity is. If the docs know that your tumors are growing by reviewing your CT's, which I assume is the reason you are advancing to a study (yes? no? maybe so?) then the PET may not necessarily be of much additional benefit. That's not to say it is useless, as they could view the tumor activity before the trial and during/post trial… in the event that the tumor size isn't a clear indication of the new treatment's efficacy. Your local oncologist may like to have the info for his own files, even if the study docs don't find it necessary for their data.

                  • October 25, 2016 at 3:00 pm
                  cf91
                  Participant

                    Thank you for your responses.  Feel better now.  Actually still waiting on results of scans from last week. Keeping fingers crossed!!

                    • October 25, 2016 at 3:00 pm
                    cf91
                    Participant

                      Thank you for your responses.  Feel better now.  Actually still waiting on results of scans from last week. Keeping fingers crossed!!

                      • October 25, 2016 at 3:00 pm
                      cf91
                      Participant

                        Thank you for your responses.  Feel better now.  Actually still waiting on results of scans from last week. Keeping fingers crossed!!

                      • October 25, 2016 at 2:56 pm
                      cancersnewnormal
                      Participant

                        MRI is better clarity in the brain than PET. CT of chest/ab/pelvis will show location and size, but not the "glow" of uptake… aka… how strong the individual tumor activity is. If the docs know that your tumors are growing by reviewing your CT's, which I assume is the reason you are advancing to a study (yes? no? maybe so?) then the PET may not necessarily be of much additional benefit. That's not to say it is useless, as they could view the tumor activity before the trial and during/post trial… in the event that the tumor size isn't a clear indication of the new treatment's efficacy. Your local oncologist may like to have the info for his own files, even if the study docs don't find it necessary for their data.

                        • October 25, 2016 at 2:56 pm
                        cancersnewnormal
                        Participant

                          MRI is better clarity in the brain than PET. CT of chest/ab/pelvis will show location and size, but not the "glow" of uptake… aka… how strong the individual tumor activity is. If the docs know that your tumors are growing by reviewing your CT's, which I assume is the reason you are advancing to a study (yes? no? maybe so?) then the PET may not necessarily be of much additional benefit. That's not to say it is useless, as they could view the tumor activity before the trial and during/post trial… in the event that the tumor size isn't a clear indication of the new treatment's efficacy. Your local oncologist may like to have the info for his own files, even if the study docs don't find it necessary for their data.

                          • October 25, 2016 at 4:28 pm
                          snow white
                          Participant

                            Pleae make sure they are doing a MRI of your Brain, and not just your face.  I am sure they are, but my Dad's original doc only did scan from neck down.  Unfortunately , brain mets were not diagnosed until later and there were already 15 of them 🙁

                             

                            • October 25, 2016 at 4:28 pm
                            snow white
                            Participant

                              Pleae make sure they are doing a MRI of your Brain, and not just your face.  I am sure they are, but my Dad's original doc only did scan from neck down.  Unfortunately , brain mets were not diagnosed until later and there were already 15 of them 🙁

                               

                              • October 25, 2016 at 4:28 pm
                              snow white
                              Participant

                                Pleae make sure they are doing a MRI of your Brain, and not just your face.  I am sure they are, but my Dad's original doc only did scan from neck down.  Unfortunately , brain mets were not diagnosed until later and there were already 15 of them 🙁

                                 

                                • October 26, 2016 at 1:44 am
                                Johnjk04
                                Participant

                                  Cancersnewnormal, yes I went into the trial because the mel had progressed to my brain, lungs, liver, adrenal gland and gall bladder. So it looked like time to jump on something real quick. Was very fortunate because Yale New Haven and Sloane Kettering were the only hospitals with the trial.

                                   

                                  • October 26, 2016 at 1:44 am
                                  Johnjk04
                                  Participant

                                    Cancersnewnormal, yes I went into the trial because the mel had progressed to my brain, lungs, liver, adrenal gland and gall bladder. So it looked like time to jump on something real quick. Was very fortunate because Yale New Haven and Sloane Kettering were the only hospitals with the trial.

                                     

                                    • October 26, 2016 at 1:44 am
                                    Johnjk04
                                    Participant

                                      Cancersnewnormal, yes I went into the trial because the mel had progressed to my brain, lungs, liver, adrenal gland and gall bladder. So it looked like time to jump on something real quick. Was very fortunate because Yale New Haven and Sloane Kettering were the only hospitals with the trial.

                                       

                                        • October 26, 2016 at 1:20 pm
                                        cancersnewnormal
                                        Participant

                                          Dude… you have been through the ringer! Are the trial docs asking that you have any brain metastasis under control prior first? It sounds like you have had a long road of experience in just a couple of years! Hopefully this new treatment can bring you some turnabout. Best wishes! Keep us updated.  : )

                                          • October 26, 2016 at 1:20 pm
                                          cancersnewnormal
                                          Participant

                                            Dude… you have been through the ringer! Are the trial docs asking that you have any brain metastasis under control prior first? It sounds like you have had a long road of experience in just a couple of years! Hopefully this new treatment can bring you some turnabout. Best wishes! Keep us updated.  : )

                                            • October 26, 2016 at 1:20 pm
                                            cancersnewnormal
                                            Participant

                                              Dude… you have been through the ringer! Are the trial docs asking that you have any brain metastasis under control prior first? It sounds like you have had a long road of experience in just a couple of years! Hopefully this new treatment can bring you some turnabout. Best wishes! Keep us updated.  : )

                                            • October 26, 2016 at 1:27 pm
                                            BrianP
                                            Participant

                                              John,

                                              Like others have already said most trials do CTs because they are interested in getting the closet measurements they can of the disease.  Just wanted to let you know during my two year trial there was at least once and maybe twice where I was able to get a PET outside of the trial because we wanted to get information the CT was unable to provide. 

                                              Good luck to you.  What trial are you doing?

                                              Brian

                                              • October 26, 2016 at 1:27 pm
                                              BrianP
                                              Participant

                                                John,

                                                Like others have already said most trials do CTs because they are interested in getting the closet measurements they can of the disease.  Just wanted to let you know during my two year trial there was at least once and maybe twice where I was able to get a PET outside of the trial because we wanted to get information the CT was unable to provide. 

                                                Good luck to you.  What trial are you doing?

                                                Brian

                                                • October 26, 2016 at 1:27 pm
                                                BrianP
                                                Participant

                                                  John,

                                                  Like others have already said most trials do CTs because they are interested in getting the closet measurements they can of the disease.  Just wanted to let you know during my two year trial there was at least once and maybe twice where I was able to get a PET outside of the trial because we wanted to get information the CT was unable to provide. 

                                                  Good luck to you.  What trial are you doing?

                                                  Brian

                                                  • October 27, 2016 at 1:17 pm
                                                  Johnjk04
                                                  Participant

                                                    Hello all – I was in the initial ippi / nivo combo trial. Yes I had one brain met at start of trial that had to be Cyber Knifed first. About 4 months into trial I had two more brain mets Cyber Knifed. Even though I am four years NED, I will never be considered a responder or even a partial responder in the trial.

                                                    • October 27, 2016 at 1:17 pm
                                                    Johnjk04
                                                    Participant

                                                      Hello all – I was in the initial ippi / nivo combo trial. Yes I had one brain met at start of trial that had to be Cyber Knifed first. About 4 months into trial I had two more brain mets Cyber Knifed. Even though I am four years NED, I will never be considered a responder or even a partial responder in the trial.

                                                      • October 27, 2016 at 1:17 pm
                                                      Johnjk04
                                                      Participant

                                                        Hello all – I was in the initial ippi / nivo combo trial. Yes I had one brain met at start of trial that had to be Cyber Knifed first. About 4 months into trial I had two more brain mets Cyber Knifed. Even though I am four years NED, I will never be considered a responder or even a partial responder in the trial.

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