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NED: Aches and pains
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NED: Aches and pains

› Forums › General Melanoma Community › NED: Aches and pains

  • Post
    • June 6, 2018 at 8:20 pm
    Spl25
    Participant

      I've been "NED" for just over 2 months, but have had lots of random aches and pains after going off of Pembrolizumab, including under my armpits and at former tumor sites. I know theres no way to know anything definitively until my next scan, but is this a common occurrence? I can assure you its not all in my head 🙂

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        • June 6, 2018 at 9:30 pm
        Jubes
        Participant

          Hi

          Congrats on nbeing Ned!

          I went off pembro 3 years ago due to aches and pains. 

          I am Ned. Scans show that I have widespread arthritis  and spondylitis condition which we have treated with steroids, infliximab, and other oral immune suppressants. Yours may be something different but I believe it is quite common for these side effects to occur. The scan should reveal the causes. 

           

          Anne-Louise

          • June 9, 2018 at 2:28 am
          TexMelanomex
          Participant

            It looks like we've been NED about the same amount of time. I'm still on Pembro, but am noticing the same. Not terrible pain or anything, just aches and pains in my armpits, knees, and ankles. I'm thinking its just the Pembro doing its thing, could be residuals from the Pembro for you? My next scans are not until July to see if I keep the NED status but I'm not terribly worried about them and I think the aches and pains are just the body adjusting to the immunotherapy. Maybe someone who has been off Pembro can give you their perspective since I'm still "on the juice".

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