Hello

Hi WillieM and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

Thanks for taking the time to share your experiences with melanoma and Nivolumab with us. From memory, I think there are a few people in the group who have been left with an effect on their adrenal gland. If you type 'adrenal' into the search bar it will bring up previous posts which mention this side effect.

It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on 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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Hi WilliaM, so my husband has been affected by his immunotherapy treatment. He now has Addison’s disease and his body is unable to produce cortisol so he has to take hydrocortisone on a daily basis. Reading up on Addison’s was quite scary, we’ve had an appointment with an endocrinologist and been appointed an endocrinologist nurse contact in case we need advice. So far all has gone well and I can honestly say since taking the tablets he’s living a normal life. 

Hi Willie,

I think I'm in quite a similar situation to you - had primary removed, then recurrence, then ipi and nivo, which gave me adrenal insufficiency too! I'm just back onto nivolumab now. 

I've got a specific question for you... my mother lives in Moray (Keith) and I'd really love to visit her but haven't been able to, due to side effects (which were also colitis and fatigue). I'm thinking of trying to go quite soon and she's worried about where I'd get help if I got side effects while I'm up there (as I am treated in Sheffield where I live). So can I ask, where are you treated and where do you go in an emergency / to get your side effects checked?

Thank you.

Best,

Susie

Hi Susie,

I go to Aberdeen Royal Infirmary which is the main hospital in Grampian. Keith is within Grampian, but about 50 -  60 mins away. There is a hospital in Elgin ( Dr Grays) which is about 25-30 mins west of Keith. It doesn’t have a full time presence of all disciplines but I think does clinics with staff from ARI. There is an Emergency Department which I think would be able to deal with side effects in an emergency. 
Would you have transport while you are there? 

Normally if experiencing side effects of treatment the process would be to call a helpline which I think is run on a national (Scottish) basis. They triage and liaise with oncology at whatever hospital one is treated and then tell one what to do. I had to use it a few times, once led to an emergency admission to the oncology ward and then endocrinology, another they called an ambulance and I went to the normal emergency department.

I wonder if it’s worth speaking to your team and asking them. They might be able to liaise with appropriate people up here.

 I’m sure that it’s something that hospitals deal with all the time but I completely understand you wanting to be sure before travelling. I hope you manage to make it up here to see your mum,

Willie