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Any hypophysitis forum recommendations?

Forums General Melanoma Community Any hypophysitis forum recommendations?

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    MovingOn
    Participant

      Does anyone with hypophysitis from Ipi (or other immunotherapy) know of a forum where those issues are discussed (adrenals, pituitary, etc)?

      I ended up in the emergency room today. I have the flu but what really made me scared was the adrenal crisis which hit me around 3pm. I normally take 15-20mg of hydrocortisone each day. Because I was sick I updosed to 30mg. Well I now know that I should have taken a total of 100mg today (the ER pumped me with 200mg of hydrocortisone and now things are fine – I still have the flu but the involuntary muscle contractions, rapid heart rate, and puking are over.

      I’ve also noticed my TSH (produced by the pituitary) has gone up 8 fold from where it was at hypophysitis diagnosis in May. It is now 1/2 of the low end of the normal range (but my Oncologist sternly says it will not recover. I hope she is being purposefully negative to not get my hopes up). So I’d like to discuss these things with others who have experienced hypophysitis. It is part of my new normal and I’m not sure I know too much about it yet.

      I also had an ACTH stim test and my adrenals barely worked. They haven’t been used since April so they are atrophying. I wonder if others who have experienced hypophysitis are doing anything to keep their adrenals healthy (or maybe no one does because the pituitary is non-functional for life).

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        miaka618
        Participant

          Oh wow, that is scary! I haven't been more sick than the occasional cold since I've gotten hypophysitis, so I have no idea what to expect from an adrenal crisis. I agree, I think a forum for these specific topics would be good. If one cannot be found, perhaps one can be started. Several people, including myself, own websites where one could easily be started.

          Bubbles
          Participant

            I don't know of any additional forums.  Sadly when adrenals, the pituitary, or the thyroid are damaged they often fail to recover.  Though…there are instances where they can.  On the positive side, hormonal replacement can be provided.  Here are two articles that might be of interest to you:

            Endocrine-related adverse events following ipilimumab in patients with advanced melanoma: a comprehensive retrospective review from a single institution.  Ryder, Wolchok, et al.  Edocr Relat Cancer.  2014 March 7.

            "Novel immune checkpoint blockade with [ipi], an antibody blocking the cytotoxic T-lymphocyte antigen 4 is revolutionizing cancer therapy.  However, [ipi] induces symptomatic and sometimes severe, endocrine immune-related adverse events that are inconsistently recognized and reported."  In a retrospective study these folks looked at 256 records of patients receiving ipi in clinical trials between 2007 and 2013.  They looked at their hormone related labs, X-ray results, and clinical histories.  After ipi, they found that the patients demonstrated an 8% incidence of hypophysitis, 6% dealt with hypothyroidism/thyroiditis, and primary adrenal dysfunction was rare.  When Nivo and ipi
            were given together, there was a 22% incidence of either thyroiditis or hypothyroidism, and a 9% incidence of hypophysitis.  "Symptomatic relief, in particular, for hypophysitis, was achieved in all patients with hormone replacement, although endogenous hormone secretion was rarely recovered."  "Prompt initiation with hormone replacement reverses symptoms."

            A final link to a post with information and link to the article itself within:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/excellent-pdf-on-how-to-deal-with.html

            Hope that helps.  I wish you well.  Celeste

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