Pembro and endocrine system

Hi Tessa2426 and a very warm welcome to the online community

It must be very hard for you and your husband to discover that the pembro treatment he's had has damaged his endocrine system. I know that has also had this happen so have 'tagged' her in the hope that she'll pop on and tell you about her experiences.

While you're waiting for replies it would be great if you could pop something about your husband's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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This happened to me six years ago. My anterior pituitary gland was damaged during immunotherapy. This means neither my adrenal glands nor my thyroid gland work.

Some people are luckier than me and their glands recover. I have been taking replacement cortisol (prednodoline in my case) and replacement thyroxine (levothyroxine) for six years now. I have learnt to manage my condition.

But I am alive! And NED (no evidence of disease) for melanoma.

will do in the next few days.

good to know MoiraA  that you are 6 years down the line. how many treatments had you had before this happened? only two with my husband. bit worrying as oncology says it generally happens later on. x

Hi - my husband had 4 treatments of Ipilimumab & Nivolumab which resulted in him now having to taken thyroxin and cortisol for life (and no more treatment). . BUT he is really well and only has a couple of tiny nodules in his lungs which haven't changed for over a year now.  See my profile for more details.  Fingers crossed for you both.

Thanks Kennie, good to know your husband is really well. Mine is a lot better now he is taking cortisol.