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Pwest55

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      Pwest55
      Participant
        I was in a clinical trial with nivolumab as an adjuvant treatment for stage 2b melanoma.

        After one nivo treatment my TSH went from 4 to .01 and my free T4 doubled. Doc put me on steroids. Next month my TSH was 60. Decided to drop out of the trial.
        That was a year ago and I have been on a full replacement dose of levothyroxine ever since.

        Pwest55
        Participant

          Hi Jenny

          I was also in a trial with obdivo but only took one treatment before my thyroid said no more. I traveled a long distance (600 miles) and actually drove 80 % of the way home with no issue. I am stage 2B and was told one more treatment would cause irreversable harm to my thryroid so i figured it wasnt worth the risk. Good luck. 

           

          Pwest55
          Participant
            I had a nodular melanoma diagnosed in June. I first noticed it in April. It was a flesh colored pea sized bump on my arm. It had a wide excision and negative sentinal lymph node biopsy.
            The tumor had a depth of 9mm so a deep tumor does not guarantee the cancer has spread to the lymph.My scans were clear but due to the high risk of reoccurrence I have decided to join a clinical trial where I get monthly infusions of Opdivo.
            Pwest55
            Participant
              I am stage 2b and currently involved in a clinical trial. They wanted to do genetic testing and I asked how much. They said you can apply for financial help if you want. I did and got a call the next week that the testing would be free.
              Pwest55
              Participant
                I had a stage 2 nodular melanoma 18 months ago. It was very thick (9mm) and had a high mitotic rate so I decided to enroll in a clinical trial with opdivo.
                One treatment and my TSH went to 0. I was told that my thyroid may recover if I discontinued treatment. I did and a month later my TSH was 60.
                My thyroid never recovered and I am now on a full replacement dosage of thyroxine.
                Thankfully all my scans have been clear.
                Pwest55
                Participant
                  I was diagnosed 2B back in July. It was a nodular melanoma that was 9 mm thick and had a very high (10-12) mitotic rate. I wanted to be proactive sp zi joined a clinical trial with opdivo. After one treatment I had fatigue and little appetite. Blood tests before second infusion should thyroiditis. My choice was permanent thyroid damage or dropping out of the trial. I dropped out. Now awaiting tests to see if my thyroid recovers.
                  Pwest55
                  Participant

                    Whoops low TSH and high T$

                    Pwest55
                    Participant

                      I too had a nodular melanoma that was discovered back in June. It was on the inside of my elbow and looked like a small flesh colored pea. The dermatologist thought it might be basel cell and did a shave biopsy. It came back melignant. 

                      I had a wide excision and a SLNB that was negative. The total depth was 9mm and it had a very high mitotic rate. No ulceration so 2B.

                      Decided to join a clinical trial with opdivo, After my first treatment I was tired and did not have a very good appitite. Before my second treatment my blood work came back showing my thyroid hormones were out of wack (high TSH and high T4)  I had a choice to quit the trial or have irreversible permanent thyroid damage. I choose to quit.

                      I have now on prednisone hoping my thryroid recovers. Should know in a couple weeks.

                      Pwest55
                      Participant

                        I had a 9mm deep nodular melanoma with a negative SLNB. Decided to join a clinical trial with opdivo. Had one treatment and my blood tests showed thyroid issues. My choice was to continue with the trial with a 100 percent chance of permanent thyroid damage or quit. I choose to quit and am now one steroids to calm my immune system down. Hopefully my thyroid will return to normal.

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