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Steve33

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      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.

        Steve33
        Participant
          I’ve also been taking levothyroxine for about 1.5 years without issue. My TSH has been in stable range once my docs figured out the dosage. I’ve never taken the Synthroid brand but I assume it’s more expensive vs the generic levothyroxine. I pay ~$20 for 90 days after insurance.
          Steve33
          Participant
            Hi Cindy,

            It is definitely not uncommon for immunotherapy to affect the thyroid. I received Nivolumab monotherapy. My thyroid before extremely overactive after the first treatment (hyperthyroid). After about a month, my thyroid basically stopped working and I became hypothyroid. My TSH shot up to about 80. I started on synthroid (levothyroxine). Eventually my TSH came back in range with a dose of 200 mcg of synthroid. I’ve been off of nivolumab for 6 months now, so it appears by thyroid was permanently damaged by the immunotherapy.

            Steve33
            Participant
              Juggling my melanoma diagnosis &  work was also something I was concerned about originally and caused me a lot of stress, but there are a lot of laws in the USA that helped me feel a lot better about it. HIPPA privacy laws basically protect you from having to disclose your diagnosis as well as protects you from being discriminated for health reasons. FMLA laws protect your job from being taken away if you have to take leave for medical needs. Employers are allowed to ask for a doctor note to verify you a need to miss work, but that’s about it. In the end, it’s really none of their business other then to know that you need to miss work for medical reasons.

              As far as disclosing your diagnosis, it’s more of a personal decision. I preferred to not disclose it, especially in the beginning when it was emotional to discuss. Now I’m a little bit more open. I had a few colleagues that eventually asked me what’s going on and I felt comfortable telling them because I consider them friends. I had some occasional unwelcome questions from colleagues that I’m not close with because my scar from surgery is very visible on my neck. I told them I had a mole and the surrounding area removed. That usually ended the conversation.

              I even changed companies and moved across the country in the middle of my treatment. I again initially had concerns but kept reminding myself that it is:

              a) literally none of their business

              b) I’m protected by privacy and discrimination laws

              So overall  I wouldn’t worry too much about it. I have always hated missing work because of doctor and treatment appointments and got stressed thinking about juggling work but it really was not an issue.

               

              Steve33
              Participant
                I have a fairly similar diagnosis. Recent 3B. Primary melanoma near my ear. 1 lymph node metastasis in neck. Mine wasn’t particularly big, but I did have an extracapsular extension. I went forward with the radiation in January 2020. Definitely not a fun process, especially in the head and neck area. My main side effect was severe short term dry mouth for about a month, but have since recovered. Also lots of food and drink tasted funny. I now have to fluoride everyday, which gives me a gagging sensation. Also had some short term hair localized loss since my hair line on the back of my head was in the radiation area.

                There are some more significant long term risks with radiation, but the probabilities are very low. The most significant risk to my long term health is the melanoma.

                I decided to do it because my doctors recommended it and more importantly I wanted to aggressively FIGHT the melanoma with every weapon available. I also wanted to significantly reduce the risk of having another surgery in the sensitive head and neck area. Radiation is VERY effective for localized control.

                I am also on Opdivo treatment, almost half way through.

                Like you, I’m just beginning my journey with stage 3 melanoma. Who knows if I’ll beat it, but I sleep well knowing I’ve attacked and fought back as hard as possible.

                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

                  Steve33
                  Participant
                    I took my first vaccine shot 2.5 days ago. I developed a fever about 18hrs later. Fever lasted about 24 hrs then subsided. Overall, my experience with COVID vaccine is very similar to what I’ve experienced with flu vaccine.
                    Steve33
                    Participant
                      Thank you for the link!  Very helpful
                      Steve33
                      Participant
                        I had surgery mid-November. Started Nivo in mi-December and radiation was in early January. 5 radiation sessions over 2.5 weeks. Agreed with the previous post that the mouth piece is the worst part, but bearable. Radiation sessions are very quick. About 15 minutes.
                        Steve33
                        Participant
                          Just following up from my original post, I did eventually turn to hypothyroid. I am now taking 100mg levothyroxine and will continue to monitor. Doctors won’t commit to saying if it’s permanent or temporary.

                          Steve33
                          Participant
                            Thanks all for the response. All of the responses seem to agree with what I’ve read in that Opdivo can cause a brief period of hyperthyroidism but normally it’s followed by hypothyroidism.

                            Has anyone not transitioned from hyperthyroidism to hypothyroidism? Is there a treatment for hyperthyroidism caused by Opdivo? Everything I read about managing this side effect has to do with hypothyroidism. Has anyone had to pause or stop treatment from Opdivo to hyperthyroidism?

                            Steve33
                            Participant
                              Hi Michelle – thanks for your prompt and detailed response! Certainly your experience makes me feel more comfortable about the situation. I’m a Houston resident, so it’s still kind of frustrating because of silly billing red tape, but I agree it’s not a bad situation. Certainly could be worse, thanks again!
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