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Anybody know of any cases of endocrine adverse events have been reversible??

Forums Anybody know of any cases of endocrine adverse events have been reversible??

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    nsreenan
    Participant
      The immunotherapy appears to have destroyed my ability to make cortisol, aka. caused adrenal insufficiency. I’m taking hydrocortisone to replace it, and I now have to wear a medical alert bracelet because of it. Multiple sources, including my oncologist, suggest that endocrine adverse events due to immunotherapy are not transient and not reversible. Endocrinopathies are unique among adverse events caused by immunotherapy.  Anybody know of any cases of endocrine adverse events have been reversible??
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        Bubbles
        Participant
          I have posted zillions of reports on side effects of immunotherapy on my blog (use the search bubble to find them if you are interested) over the past ten years. While pneumonitis and colitis can be far more persistent than we would like, and even lethal if not treated appropriately – those sorts of side effects usually resolve with the use of steroids if needed and over time once off immunotherapy. Rashes and joint pain due to immunotherapy can be miserable and at times debilitating, but similarly – usually once off immunotherapy (and sometimes with steroids and other drugs typically used in rheumatoid conditions in the instance of joint pain) – they gradually resolve – at least down to a low roar. Unfortunately, changes to the pituitary, thyroid, adrenal glands, etc – do not usually allow these glands to resume their functions of hormone production even after immunotherapy is ceased. So – the short answer is – it is extremely unlikely that endocrine damage due to immunotherapy is reversible. – celeste
            nsreenan
            Participant
              I don’t understand why the endocrine system is uniquely and permanently affected while the other systems recover function after immunotherapy is discontinued. Does *anyone* understand this?
              Bubbles
              Participant
                The short absolute answer is – “no”

                This report – https://www.cancertreatmentreviews.com/article/S0305-7372(17)30100-7/pdf – From some serious melanoma Big Dogs –
                Complications of Treatment Endocrine-related adverse events associated with immune checkpoint blockade and expert insights on their management – Sznol, Postow, Davies, Pavlick, et al –
                NOTES: “Immune-related endocrine events can affect the pituitary, thyroid, and adrenal glands, as well as other downstream target organs. These events are unique when compared with other irAEs because the manifestations are often irreversible. Immune-related endocrine events are typically grade 1/2 in severity and often present with non-specific symptoms, making them difficult to diagnose. The mechanisms underlying immune-related target organ damage in select individuals remain mostly undefined. Management includes close patient monitoring, appropriate laboratory testing for endocrine function, replacement of hormones, and consultation with an endocrinologist when appropriate.”

                There is also this – https://www.endocrine-abstracts.org/ea/0050/ea0050p251 – which states: ” Despite interval surveillance for endocrine recovery, resolution was infrequent, suggesting that this form of IRAE (in contrast to others) is permanent. ”

                So… even the Melanoma Big Dogs are uncertain as to the exact causality regarding the likely permanence of most endocrine adverse events. But, it is likely a simple common sense answer. While the gut, lungs, and joints are large simple organs (relatively speaking) that can recover from a variety of insults if the insult is removed and time is given – the endocrine system is delicate with its function interlinked to many other glands, hormones and systems. Damage to such organs, inadvertently caused by immunotherapy, is simply not reparable.

                c

                Bubbles
                Participant
                  Meanwhile, researchers are working to ascertain if they can predict which patients are more likely to suffer endocrine insult from immunotherapy with the goal of then determining some way to prevent it. Unfortunately, they have neither the mechanism to predict nor prevent at this point. Thankfully, the essential hormones those glands normally provide can be administered via medications. Hope that helps. c
                  ed williams
                  Participant
                    Nanwithaplan, you can also get deeper into the topic if you really want to have a better understanding than what has been given to you already. I must warn you that it comes with a price and that is” time” to digest the information. There is a great series oncology web site called ” research to practice” where the host interviews leading melanoma oncologist and gets into detail like what happens when immunotherapy treatments effect the endocrine system. You have to join, some information but no charge $$$. You can get notifications or not your choice. The link that follows is a year or so old and at the 28:30 min mark Dr. Michael Postow of Memorial Sloan Kettering talks about hypopysitis and other endocrine issues. Following this section Dr. Mario Sznol also talks about how to treat various Immune related adverse events. Best Wishes!!!Ed https://researchtopractice.com/DOU119/Video/1?playlistIndex=0#t=28m32s
                    nsreenan
                    Participant
                      Thanks for your answer. I willingly go down any internet rabbit hole offered…Probably give me a sense of control which I’ll never really have. ;)
                      nsreenan
                      Participant
                        thanks for your answer and links! I can’t resist links ;) ps. why does your blog address readers (?)melanoma drug trial participants as “ratties”?
                        ed williams
                        Participant
                          What Celeste should have used was “little white mice” as that is what I consider myself to have been when I signed up for checkmate 067 clinical trial. I will let Celeste explain for herself why she picked “Ratties”.
                          Bubbles
                          Participant
                            Because, as the 9th person in my phase 1 trial of nivolumab (now Opdivo) then called MDX1106, when marched down to the CRU (Yep – big sign over head designating it so – with “Clinical Research Unit” noted beneath) it all felt very Rats of NIMH!!! So Rattie I was and shall remain. I am exceedingly pleased to note that the nomenclature has been pretty much universally adopted by MPIP-er’s far and wide! But, the posts linked below probably explain much better –

                            Love Potion #9 – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/06/love-potionor-patient9.html
                            Ratties and HOPE – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/part-2-ratties-and-hope.html
                            C’est Moi! Results from the 33 Ratties in my trial – http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

                            However, if you are familiar with the tale [tail] you have to remember that in The Rats of NIMH, we ratties were not alone. There were mice who helped guide us through!!! Enter – The Wise and Wonderful Edster!!!!!!!!!!!!!!!!!!!!!!!!!

                            A girl’s gotta have fun. (I’m sure that is all as clear as mud – but there you go!) – c

                          Johnjk04
                          Participant
                            My advice on your endocrine issues, no it’s not coming back. You will need to take one pill each day and wear your medical alert bracelet for the rest of your life. Fifteen years ago, most stage IV melanoma patients died from it. Today, most likely your going to live through it, pretty good trade off to me.
                              nsreenan
                              Participant
                                This trade-off is coming *well before* the efficacy for me–as you say, you’re “most likely going to live through it”…I hope there’s a decent ROI in my case, but if there isn’t, the state of my endocrine system will make no difference when I’m dead.
                              Gene_S
                              Participant
                                Hello nanwithaplan,
                                My husbands body does not produce enough cortisol since he was on Ipi (Yervoy 10 mg/kg) and GMCSF and he became NED in July 2012 but stayed on the meds until Dec. 2013. He is unable to go without his prednisone which he takes every day 5mg in the morning and 2.5mg every evening. But it was a small price to pay for NED. And 7.5 mg is what your body produces in cortisol every day.

                                Judy (loving wife of Gene Stage IV and now NED for over 8 years

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