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NED after 2 months on Keytruda – how may months should I continue?
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NED after 2 months on Keytruda – how may months should I continue?

› Forums › General Melanoma Community › NED after 2 months on Keytruda – how may months should I continue?

  • Post
    • April 30, 2017 at 3:18 am
    AB
    Participant

      Hi – my 5 tumors,  each sized btwn a plum and tennis ball, and lymph nodes the size of ping pong balls in my right and left hip, have disappeared.

      any idea how long to keep getting infusions? Thanks

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    • Replies
        • April 30, 2017 at 3:59 am
        jennunicorn
        Participant
          First off, congrats on getting to NED status! Different docs have differing ideas about how long to stay on treatment once NED. Seems like something around a year is typical, especially if you’re tolerating it well with minor/minimal side effects. Ask your doc next time you see them what their plan is for you.
            • May 5, 2017 at 2:29 am
            AB
            Participant

              Thanks! The toxicity and unknown side-effects are a real issue, in the long-run. That's our concern…no history

            • May 1, 2017 at 4:03 am
            Casitas1
            Participant
              Congratulations on Ned. I was Ned at 6 month scan and quit infusions after 10 months due to side effects. Been off treatment 5 months now… Best, Paul
                • May 5, 2017 at 2:27 am
                AB
                Participant

                  Thanks Paul. How often do you get scans now?

                   

                  • May 5, 2017 at 5:11 am
                  Casitas1
                  Participant
                    Every six months… Alternate Pet ct and MRI + chest CT…
                  • May 1, 2017 at 3:50 pm
                  UBContributor
                  Participant

                    This is just like a butter on my ear: NED after 2 months only! Congrats! 

                      • May 5, 2017 at 2:27 am
                      AB
                      Participant

                        Thanks

                      • May 1, 2017 at 9:12 pm
                      RitysMom
                      Participant

                        Wow! That's so awesome! Congrats!

                          • May 5, 2017 at 2:26 am
                          AB
                          Participant

                            Thank you- may we hear many more stories like mine!

                          • May 1, 2017 at 10:10 pm
                          stevenallenschwartz
                          Participant

                            I was advised from my onc fresh from the melonoma conference in NYC last month that there is no standard protocol with regard to time. Many oncs say stop as soon as you reach NED and leave arrows in the quiver before experiencing maximum toxicity. Some oncs feel you should continue as long as you can tolerate the side effects. I am going for a second opinion as my onc suggested a total of 9 infuisions.

                             

                             

                              • May 5, 2017 at 2:25 am
                              AB
                              Participant

                                Thank you! My onc suggests a total of 8…And then a 2nd scan.

                                I felt OK after the 1st 3, but the last 2 suck- exhausted and major muscle/joint pain. I still may do the last 3…

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