Thyroid issues

› Forums › General Melanoma Community › Thyroid issues

  • Post
    • August 2, 2017 at 6:16 pm
    Scooby123
    Participant

      Hi all , hope you are as well has can be. I am due to start Keydruda Monday had my bloods done at my GP which I have had for last 2 years checking various things one is thyroid. Well it cam back out but doctor said re do in 3 months time again. I told her I was starting treatment and it could effect your thyroid but cannot believe all been spot on till now what a time to play up before treatment starts. 

       

      Anyone on on thyroid treatment and taking immunatherapy , how coped with it.

       

      Thanks

      Scooby❤️

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    • Replies
        • August 2, 2017 at 6:46 pm
        mrsaxde
        Participant

          Hey Scooby!

          Yeah, I'm having thyroid issues too. Mine actually started after ipi. I hadn't been getting Keytruda too long before my endocrinologist put me on methamizole for hyperthyroidism. My numbers actually improved to a point where she took me off it back in the winter, even though I was still getting Keytruda at the time.

          I stopped responding and was taken off Keytruda in April, but my thyroid values started going back toward hyperthyroidism. The endocrinologist wanted to do a thyroid ablation with radioactive iodine, but I had just started in a trial at Johns Hopkins and Dr. Sharfman there said no, because he was afraid the iodine would interfere with the iodine contrast needed for my scans. So I've gone back on methimazole.

          I hope things go well for you!

          -Bill

            • August 2, 2017 at 7:43 pm
            Scooby123
            Participant

              Hi Bill,

              Sorry you dealing with issue too, what trial are you doing . Do you have symptoms with your thyroid I do not at present hoping it will go back to normal. Mine started after ippi in 2015 but did go back to normal about 3 months after finishing treatment. My GP wanted to put me on treatment but I said wait to see if goes back to normal glad I did.

              wishing you kick Mel on your trial 

              Scooby❤️

              • August 2, 2017 at 9:58 pm
              mrsaxde
              Participant

                I'm in the anti-LAG-3/Opdivo combo trial at Johns Hopkins. Here's a link to it: https://clinicaltrials.gov/ct2/show/NCT01968109

                I've had 4 infusions so far. No ill effects, but my lipase is heading upward. It's not what they consider "extremely high" yet, and Dr. Sharfman signed off on my treatment yesterday. But I'm a little concerned because elevated lipase was reported in about 9% of patients in an Opdivo trial, so it seems to be a thing with Opdivo. I don't know what my options might be if I can't continue with Opdivo. We shall see.

                As for the thyroid issues, except for a noticeable goiter I've not really had any symptoms. Maybe a very slight tremor in my hands. But nothing else…no weight loss, bulging eyes, etc. In fact, after the endocrinologist first diagnosed me as hyperthyroid, my family doctor, who has been seeing me for over 30 years, said he didn't think I was hyperthyroid. And my T3 and T4 have never been extremely high, even when my TSH was extremely low, which it was for a while after ipi.

              • August 3, 2017 at 12:23 am
              Ridingaroundwith27Jennifers
              Participant

                I'm on levothyroxidine (spelling may be a little off) and currently on nivolumab.  I don't notice any symptoms but I am fatigued although this is most likely from the nivo.  Good wishes to you.

                Jennifer

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