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Off treatment

› Forums › General Melanoma Community › Off treatment

  • Post
    • June 27, 2018 at 2:14 pm
    Abbygx2589
    Participant

      Hello all,

      My dad (stage v with brain mets) has met the two year mark of ipi/nivo combo with nivo every 2 weeks. He is now off treatment as his oncologist  feels he no longer will benefit. I hope he is correct! Spots in his brain and lung are still visible but they feel that there may be no more active cancer. I cannot believe how far he has come!! 

      Has anyone else discontinued treatment without fully being known as NED (no PET/biopsies)?

       

      Thanks!

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        • June 27, 2018 at 5:36 pm
        ed williams
        Participant

          I haven't stopped yet for two reason, data is still maturing as to if you stop what happens on Nivo, some good # for Pembro patients presented at ASCO this year. Second reason is I am a big chicken and the thought of stopping the drug that has kept me alive for the last 4.5 years scares the shit out of me!!! Best Wishes for your you and your Dad!!!Ed

            • June 28, 2018 at 11:33 pm
            Abbygx2589
            Participant

              Thank you for responding! I will check out the data from ASCO. My father (and us his family) feel like you do and don’t want to stop but his clinical trial is over (ipi/nivo for brain mets) and his doctor is pushing him to stop. For some reason they said he can only do a large dose monthly if he chooses. I am worried about side effects.. but also scared for him to stop. Do you take it biweekly??

               

              • June 29, 2018 at 1:38 am
              ed williams
              Participant

                Yes, they won't let me change to monthly, since it is a clinical trial.

              • June 27, 2018 at 11:47 pm
              Mat
              Participant

                Yes, I stopped ipi-nivo after 1.5 years due to side effects.  I'm not NED but at present no active disease shows up on scans (just historical lesions).  I've been off treatment for 1 year.

                  • June 28, 2018 at 11:29 pm
                  Abbygx2589
                  Participant

                    That’s good to hear! Wishing you the best! Did you have a pet scan? 

                  • June 28, 2018 at 2:21 pm
                  cancersnewnormal
                  Participant

                    Ed… you're crackin' me up. 🙂   Abby… I had two small spots remaining in my brain (already had been gamma treated, but hadn't disappeared yet) when I stopped Keytruda after 20 months. That was 2 years ago. One of the brain "lesions" made a sudden disappearance earlier this year… the other is still camped out there in the left occipital. My radiation onc is confident "that critter is dead!". He must be correct, because it's been 3 mm for a darned long time now. Not sure why it insists on hanging out, when all of its friends and family melted away so long ago. I guess sometimes we have these very determined little mela-pieces that just want to defy us and hang out as a reminder. Bastard bits. 

                    Coming off treatment is a super unnerving thing. It took me a year to calm the scanxiety back to a "normal nervous" level again! What's really getting tricky, is that now that I've been clear for 2 years, the imaging nerves are ramping back up again, because I've hit a comfort zone that I don't want to lose, and I keep thinking "It's been an awfully long time now. How long will my body keep this up? When is the other shoe going to drop?"

                    PET isn't the most useful imaging tool in the brain, and a biopsy has obvious challenges… but with lung "stuff" showing up on CT's, I might see if I could get a final PET approved before dropping the infusions. Juuuuust for a little piece of mind.

                      • June 28, 2018 at 11:27 pm
                      Abbygx2589
                      Participant

                        I agree about the pet scan to give us a better idea about the lung. For some reason this doctor just thinks it’s neen good enough and doesn’t want one….

                        Thank you for sharing your story. It is nice to hear someone else went off treatment with visible spots in the brain. I was afraid my dad was the only one! I totally understand the feeling of “it’s been good for so long, when will it stop?” But hopefully it won’t! We are lucky to be in that comfort zone 🙂 

                         

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