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I’m back….and need advice.
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I’m back….and need advice.

› Forums › Cutaneous Melanoma Community › I’m back….and need advice.

  • Post
    • May 1, 2019 at 8:21 pm
    jc2dad
    Participant

      Subungual acral lentiguous in July 2017.  Amputation of middle digit on left hand, removal of nodes in trochlear and axillary region on left side.  5 cancerous of various stages.  Started on Opdivo in January 2018. Ruptured appendix in March.  Fairly significant joint pain.  PET showed uptake in axillary and subclavical region in December 2018 (16 months NED).  Surgery to remove rest of axillary and all remaining local nodes in side and superclavical region in February.  1 of 36 nodes was positive.  Began Yervoy in April, within a week had developed acute hypophysitis, 4mg Dexamethasone 4 x daily to keep headaches and diziness at bay.  Levothyroxine 1x a day, and a super-strong antibiotic for the extreme thrush.

       

      Here is what is going on now.  I kept getting told they are going to get me with an endocrinologist, but nothing yet.  Body temperature will not regulate itself, zero energy, very little sleep, hives, thrush constantly, insatiable appetite.  (30 lb weight gain in 2 months)  Dizzy and headache every 4 to 5 hours, particularly if Dexamethasone is not on board.  Libido non-existent, cognitive function and memory noticeably impaired, bowel function irregular.  Pretty much feel miserable everyday and completely worn out.  Started ambien for sleep but no real effect.

      Obviously pulled me off the Yervoy after only one treatment.  Said it is not an option going forward.

      Also had surgery on right arm to remove a melanoma Stage 1 in March.

      Any advice would be appreciated.

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    • Replies
        • May 1, 2019 at 10:24 pm
        Bubbles
        Participant

          I am sorry for what you are dealing with, JC.  Dang!  You certainly need to see an endocinologist.  In fact, given your history, are you not already under the care of one?  Because if you are, you can call and request an appointment yourself.  It can take some adjustments to get the symptoms of hormonal insuficiency taken care of.  As far as thrush…  Thrush is an overgrowth of yeast – a fungus.  Antibiotics will not help that, in fact, antibiotics often cause an overgrowth of organisms like yeast.  Thrush should be treated with drugs like nystatin (that you can rinse your mouth with, then spit or swallow, depending on your condition) or an oral medication like diflucan.  Additionally, if you feel that cognitive function and memory are impaired since your last scans, and are greater than lack of sleep and general misery would cause…or if you have never had one…you may need to seek an MRI (though with your hypophysitis dx I would imagine you have) of your brain.

          Hope this helps and that you are feeling better very soon.  Celeste

            • May 9, 2019 at 10:13 am
            jc2dad
            Participant
              MRI’s have been good with the exception of the hypophysitis. Pituitary had swollen to the point it was affecting brain stem (suffered in misery for a week before I went to ER like an idiot). Endocrinologist called and set an appointment for next week so hopefully I can get on the top side of these hormonal issues soon. I appreciate your reply Celeste.
            • May 2, 2019 at 4:36 am
            MarkR
            Participant

              I had hypophisitis but on Ipi / Nivo and was admitted to hospital for 4 days to deal with it.  I was given IV Prednisolone and then moved to 90mg which was tapered off over a few months (also had hepatitis at the same time).  It took a bout 4 weeks before I felt ok and used to drink a lot of Coca Cola when I wasn’t feeling great as the sugar really seemed to help.  As already suggested I would seek an endocrinologist as soon as possible.  I have just started seeing one and it is clear that you need to see one as early as possible after a reaction to get the best results.

              Best of luck and I hope you feel better soon 

              Mark

                • May 9, 2019 at 10:15 am
                jc2dad
                Participant
                  Mark, the Dexamethasone seems to be helping and the headaches and dizziness are not as pronounced. Now, it is all the other hormonal issues that seem to be the issue, and of course, due to the steroids, the insatiable appetite. I have had the strongest sugar cravings ever, which when dealing with massive weight gain, doesn’t seem to help. LOL! I appreciate your reply and sorry you had to deal with this adverse reaction as well. I hope there are no long term effects to glandular function.
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