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Brand New Stage 3B

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  • Post
    • March 14, 2022 at 4:22 pm
    Mia
    Participant
      Resolved
      I just found out I am hyperthyroid after one Pembro infusion. TSH .02 and FreeT4 6.5
      I was put on methimazole and my treatment is being paused. I have never ever had thyroid issues before. I am supposed to have a thyroid ultrasound and biopsy in a couple of weeks. What are they looking for in this test? (I had all normal Thyroid labs with my primary care Dr. three days before my first Pembro infusion). I am worried I will not be able to deal with the toxicities of Pembro if this happened so soon in my treatment. Has anyone had a similar experience so soon with a mono therapy? All of the unknown feels scary.
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    • Replies
        • March 18, 2022 at 11:09 am
        ed williams
        Participant
          Hi Mia, endocrine issues can be managed and treatment can continue. At 10;20min mark of following video, Dr. Weber explains how to manage endocrine issue caused by immunotherapy treatments. https://www.youtube.com/watch?v=37ze8NJGFhk
          • March 18, 2022 at 12:43 pm
          anxietyalldaylong
          Participant
            Hi Mia ! I had thyroid problems with pembrolizumab as well, it started with hyperthyroidism and then progressed to hypothyroidism. It’s a fairly common side effect of ICI and usually treatment can continue. Also do keep in mind that your thyroid hormones should be monitored closely since hyperthyroidism can easily convert to hypothyroidism and fast. It has to do with the activated lymphocytes attacking the thyroid gland. So hang in there and hopefully everything will go well ! Keep us updated !
            • March 18, 2022 at 8:38 pm
            Mia
            Participant
              Hi Ed ,

              Thank you so much for sending such a valuable resource!!! I am sure I will be referring to it throughout my treatment! I have already watched it once and Dr. Weber does such a nice job explaining everything with such good detail. I hope you are doing well with all that you are going through! Thank you so much for responding with such good information!:)

                • March 18, 2022 at 8:52 pm
                Mia
                Participant
                  Hi anxietyalldaylong,

                  Good to know about the transition happening fast! I will be repeating labs within a three week timeframe from my last labs. Hopefully it will all go well. Hope you are gaining clarity with all that you are going through and everything moves in a positive direction! Will be sending up prayers! Thank you so much for reaching out!:)

                • March 22, 2022 at 8:11 pm
                Steve33
                Participant
                  Hi Mia,

                  I had a very similar experience. I was also 3B and received adjuvant Opdivo. I became very hyperthyroid basically immediately after 1st infusion. Enough that I was symptomatic hyperthyroid (felt jumpy, heart racing, weight loss, irritable). Then within 2-3 months I swung down to very hypothyroid. TSH shot up to 90+. Basically my thyroid was no longer functional. I’ve been consistently hypothyroid for almost 2.5 years now. I take 200mcg synthroid once a day to manage my TSH levels which has been successful.

                  I did not stop taking Opdivo infusions or deviate from schedule at all.

                  My understanding is that thyroid issues is one of the more common side effects of PD-1 inhibitors.

                  I’ve been NED almost 2.5 years.

                    • March 22, 2022 at 9:50 pm
                    Mia
                    Participant
                      Hi Steve33,

                      My hyperthyroid symptoms were: I felt very tired, achy, weak, and had very low blood pressure. It was hard to tell if that was the Pembro or something else. My Dr. has me skipping a dose, so I hope that is ok. How did you fair the rest of your treatment? Did experiencing the overt thyroid symptoms so early on, set you up to experience even more overt side effects throughout IPI? I am worried about that. Thank you for sharing that you are NED! That really gives me hope!

                      • March 30, 2022 at 8:47 pm
                      Steve33
                      Participant
                        Hi Mia,

                        The initial thyroid issues were really the only issues I had through my immunotherapy treatment. I felt pretty tired the day I received treatment but that was it!

                        Steve

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