Adverse effects of mRCC treatments

Hi Mary and welcome to this forum, though I'm sorry that you have to find yourself here.

I too had Nivolumab, and I developed adrenal insufficiency too, after 4 sessions. It is a very rare side effect of the treatment, as is thyroid difficulties, so it is really unfortunate that you have suffered both.

You may need more support from Endocrinology, going forward. I hope your endocrinology department has someone who is interested in, and experienced in dealing with adrenal insufficiency. Many of them haven't, as it is so rare and they don't encounter it often. I have 2 excellent GPs supporting me.

There is an organisation called Addison's Disease Self Help Group. They have a website, an online forum, books, merchandise etc, and regularly hold members get togethers and conferences. It is well worth joining, and you'll get plenty of support, information and advice. Have you been advised about doubling your dose of hydrocortisone in certain situations? This can be very important!

I can't advise about the thyroid issue, as that hasn't affected me. I did get another 'Adverse Event' when my platelet levels dropped very suddenly. Thankfully, this proved to be temporary.

If you want to read about my experience in more detail, click on my name and it will take you to my profile.

My side effects happened two and a half years ago, and I'm used to living with the adrenal insufficiency now. The treatment did work on the cancer!

You may not get many responses to your post, as your side effects are so rare. I hope others will come along soon!

xxx Kate

Thanks for coming back to me Kate.  I started off in 2020 with a left nephrectomy - no symptoms of kidney cancer, it was spotted when I had a scan for something else. I went along for a year or so without any problems until metastatic lesions appeared in a regular scan and I was monitored more closely until November 2024 when they decided the lesions had grown to a size that required treatment. So I started the combined nivulomab and cabozantinib treatment and it went downhill from there.  Apparently my cortisol and thyroid levels were ok in April although I was feeling crap and was off and on treatments with steroids and BP tablets thrown into the mix. In July I said enough was enough and I didn’t want to take any more medications.  More tests and lo and behold adrenal insufficiency and hypothyroidism.  So I am now coming to terms with that.  Although I was given all the bumph and medications I haven’t seen an endocrinologist yet or my GP  and only through DrGoogle have I found out that this AI is a serious thing not to be taken lightly.  My oncologist of course is only interested in getting me back on my cancer treatments - the lesions have shrunk a bit and are stable - so no real worries there. Apart from more adverse effects?!

Thanks also for the heads up about the self help group.  I’ve joined the group and the information provided is very helpful.

I’m lucky that I don’t have far to travel for treatment.  I live in Perth and go to Ninewells in Dundee for mine.

Are you now finished your cancer treatment?  Great news if that’s the case.  
Thanks again for coming back to me- I really appreciate it.

Best wishes, Mary

Hi again Mary

I'm in Scotland too! About as far South as you can get. I'm hoping my GP will refer me to an endocrine doctor working in Glasgow, as my local hospital really hasn't proved very useful in dealing with my AI if I have any difficulties. My oncologist is in Edinburgh.

The self help group do hold get-togethers, and sometimes they are in Glasgow....so maybe we'll meet up at one in the future! I went to one a couple of weeks ago in Newcastle.

I haven't had any further treatment....that's 2 years now. I don't know if there's been any changes, as I've decided not to know, for the time being. I'm feeling very well! 

Hope you are managing OK too. It's hard juggling several different health conditions at the same time!

xxx Kate

You have been very helpful and encouraging Kate.  Thank you.  It would be good to meet up at one of the get togethers.   Nothing now for me to do but wait for my next lot of appointments but at least I am now better informed than I was.  There’s always a lot of waiting isn’t there!

Best of luck to you for the future.

Mary xx