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Hi, kinda new
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Hi, kinda new

› Forums › General Melanoma Community › Hi, kinda new

  • Post
    • July 6, 2017 at 12:58 am
    JaiLee
    Participant

      Hello,
      Been lurking here since Jan. But I have been lurking so long I realized that I can actually maybe help answer some questions too, so decided to join 🙁
      Diagnosed with stage 3 in Jan. had WLE and SN removal as well as groin lymphs removed. Pet scan clear. Started the Ipi / pembro trial and had one infusion. Unfortunately I got on the ipi, and in the trial the dose is even higher than if we weren't. The "regular" dose would be 10mg, and the trial dose is 11. And yes obviously the side effects have the potential to be worse too.

      I was wondering if everyone who had their thyroid, adrenals or pituitary gland killed by ipi, does it come back? Or arre you on medication forever?

      My worst side effects are excessive sweating, chills, random sharp joint pains (not in previously injured areas), weird very painful "fireworks" for lack of a better term, going off in my leg, neck feels fat and shoulders hurt, headaches, but the worst is a strange lower left back pain, like around my upper hip area.

      Not looking forward to round 2 🙁

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    • Replies
        • July 6, 2017 at 4:48 pm
        Ridingaroundwith27Jennifers
        Participant

          Hi.  I had Ipi/Nivo treatment (made it through two rounds before side effects sidelined me).  I'm on Nivo only now.  My thyroid is shot and so I'm on synthroid for life.  It's a small pill and easy to take but I'm not happy beling on forever meds.  Maybe someone else has had different thyroid response.

          Best wishes to you,

          Jennifer

            • July 7, 2017 at 12:38 am
            momsmole
            Participant

              I'm sorry to hear about the tough side effects from your treatments.  I don't know about the melanoma treatments, but I've been on thyroid meds for about 25 years (non related to cancer).  I don't know if you know that some people do not get results from generic synthroid.  Have your doctor keep track of your levels until you're sure its working for you, and best of luck to both of you.

               

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