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CT vs PET scan NED
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CT vs PET scan NED

› Forums › General Melanoma Community › CT vs PET scan NED

  • Post
    • December 14, 2015 at 3:20 pm
    Bruce Davis
    Participant

      I've been on zelboraf for 4 years and 3 months. Nodules in lungs have been stable for almost 4 years. The two largest being about 4 mm along with other scarring on CT scans. Might a PET scan show this as being NED enabling a vacation from zelboraf with close follow-ups. Wanted to know if anyone has had similar experience.

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    • Replies
        • December 14, 2015 at 3:58 pm
        BrianP
        Participant

          Bruce,

          Not sure a PET scan is going to give you the answer you want.  I'm in a similar position.  I have two tumors which have been stable for 20 months.  I just had my second PET a week ago and neither of them is showing any uptake.  I've consulted several doctors and none of them will say that my remaining tumors are necrotic.  In fact several of them say they probably aren't necrotic.  With immunotherapy (I've been on Opdivo) it is pretty common for the tumors to shrink and then become stable.  It's like a stalemate where my immune system has "walled off" the cancer but it is not dead.  It's kinda like it's dormant (my word not any doctor I've seen).  I'm not sure if targeting agents like zelboraf are experiencing similar outcomes.  I think the only sure fire way to determine if the nodules are scar tissue or necotic is to biopsy them.  If those nodules have been stable for 4 years I'd be willing to bet they aren't going to light up on a PET, which would be nice and reassuring to know, but I don't think you can jump to the conclusion you are NED because of that. 

          Congrats on the 4 years of stability.  Hope the side effects have been minimal.

          Brian

          • December 14, 2015 at 3:58 pm
          BrianP
          Participant

            Bruce,

            Not sure a PET scan is going to give you the answer you want.  I'm in a similar position.  I have two tumors which have been stable for 20 months.  I just had my second PET a week ago and neither of them is showing any uptake.  I've consulted several doctors and none of them will say that my remaining tumors are necrotic.  In fact several of them say they probably aren't necrotic.  With immunotherapy (I've been on Opdivo) it is pretty common for the tumors to shrink and then become stable.  It's like a stalemate where my immune system has "walled off" the cancer but it is not dead.  It's kinda like it's dormant (my word not any doctor I've seen).  I'm not sure if targeting agents like zelboraf are experiencing similar outcomes.  I think the only sure fire way to determine if the nodules are scar tissue or necotic is to biopsy them.  If those nodules have been stable for 4 years I'd be willing to bet they aren't going to light up on a PET, which would be nice and reassuring to know, but I don't think you can jump to the conclusion you are NED because of that. 

            Congrats on the 4 years of stability.  Hope the side effects have been minimal.

            Brian

            • December 14, 2015 at 3:58 pm
            BrianP
            Participant

              Bruce,

              Not sure a PET scan is going to give you the answer you want.  I'm in a similar position.  I have two tumors which have been stable for 20 months.  I just had my second PET a week ago and neither of them is showing any uptake.  I've consulted several doctors and none of them will say that my remaining tumors are necrotic.  In fact several of them say they probably aren't necrotic.  With immunotherapy (I've been on Opdivo) it is pretty common for the tumors to shrink and then become stable.  It's like a stalemate where my immune system has "walled off" the cancer but it is not dead.  It's kinda like it's dormant (my word not any doctor I've seen).  I'm not sure if targeting agents like zelboraf are experiencing similar outcomes.  I think the only sure fire way to determine if the nodules are scar tissue or necotic is to biopsy them.  If those nodules have been stable for 4 years I'd be willing to bet they aren't going to light up on a PET, which would be nice and reassuring to know, but I don't think you can jump to the conclusion you are NED because of that. 

              Congrats on the 4 years of stability.  Hope the side effects have been minimal.

              Brian

                • December 16, 2015 at 2:56 pm
                Bruce Davis
                Participant

                  Brian,

                  Thanks for sharing your experience. Hope your side effects have been minimal also.

                  I've been fortunate with side effects compared to most people i read about on zelboraf.

                  Bruce

                  • December 16, 2015 at 2:56 pm
                  Bruce Davis
                  Participant

                    Brian,

                    Thanks for sharing your experience. Hope your side effects have been minimal also.

                    I've been fortunate with side effects compared to most people i read about on zelboraf.

                    Bruce

                    • December 16, 2015 at 2:56 pm
                    Bruce Davis
                    Participant

                      Brian,

                      Thanks for sharing your experience. Hope your side effects have been minimal also.

                      I've been fortunate with side effects compared to most people i read about on zelboraf.

                      Bruce

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