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fedupnurse67
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fedupnurse67

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      • February 8, 2020 at 8:02 pm
      fedupnurse67
      Participant
        My TSH is tested, and if that is out of whack I get my T3 and T4 tested as well.
        • January 31, 2020 at 1:11 am
        fedupnurse67
        Participant
          I started with Opdivo/Yervoy in September, my TSH was ok the first month, then it dropped to below normal but my T3 and T4 were both ok. TSH remained low for the 2nd month, T3 just above normal, and T4 was normal. TSH in month 3 was above normal, T3 went to normal, T4 was above normal. Month 4 TSH (January) it was completely normal, and T3 and T4 were not checked. January was also my 1st month on just the Opdivo. I get the impression that the TSH can fluctuate greatly while on treatment and its monitored and treated accordingly. I was told to prepare to go on Synthroid as these treatments will pretty much kill the thyroid.
          • January 2, 2020 at 8:03 pm
          fedupnurse67
          Participant
            When I was first diagnosed, way back in 2000, I was stage 3 with lymph node involvement no primary site. Is it possible that you do not have a primary site? But I was sent to a variety of Dr’s looking for a primary site – which was never found. And I have gone to a melanoma clinic every year since my diagnosis for full body checks. Re-occurrence July of this year, started the ipi/nivo in September, completed early December. Waiting for PET scan at end of month to see how that worked, and am now on just nivo.
            Pretty much no other treatments to do, but it’s good to keep a check of where your melanoma is and if it has spread from where they originally found it.
            I was also told to never let them do a shave biopsy of any findings on my skin because I do have melanoma, but that was years ago and don’t know if that is still the same
            • December 29, 2019 at 7:01 pm
            fedupnurse67
            Participant
              Thanks all, I will be having a margarita on New Years Eve!!
              • December 24, 2019 at 3:26 am
              fedupnurse67
              Participant
                LDH levels show tissue damage, and is an indicator that something maybe wrong when it starts to go up. I was diagnosed with melanoma in 2000, left groin lymph node removed, 1 year of interferon. NED for 19 years. LDH was checked every year. This past March had an elevated LDH, repeat LDH in July. Was even higher. Because of this I was sent for a CT scan, which showed some enlarged lymph nodes in peri-aortic cavity. CT scan biopsy in August showed my melanoma had reoccurred.
                LDH is used primarily for melanoma, and keeping an eye on it.
                  • December 24, 2019 at 3:29 am
                  fedupnurse67
                  Participant
                    Possibly going back down because your bodies immune system kicked in and took care of whatever was causing the LDH level to go up. People with melanoma get immunotherapy, to kick start your immune system into fighting. (that’s a very basic description of immunotherapy, it is more complicated for sure)
                  • December 20, 2019 at 1:02 am
                  fedupnurse67
                  Participant
                    Congratulations! It feels amazing doesn’t it? I was first diagnosed in June of 2000! I’m still here!
                    • October 24, 2019 at 2:38 am
                    fedupnurse67
                    Participant
                      • August 27, 2019 at 1:21 am
                      fedupnurse67
                      Participant
                        So definitely a recurrence of my melanoma. Not a candidate for resection. BRAF positive. Looks like my treatment will be ipilimumab with nivolumab. Not sure when treatment will start. Having a PET scan next week, since the oncologist in 3 weeks. So let the fun begin again!

                        Questions will be now side effects? Can I work? I couldn’t while on the interferon.

                        • November 9, 2019 at 1:01 am
                        fedupnurse67
                        Participant
                          Did she gain weight with her appetite going up? If the thyroid level was so low, why hyperthyroid?
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