Mucosa melanoma on inside of nose

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

I was treated for melanoma but that didn't include pembro so I didn't have to make the choice that you're faced with. However, I noticed that your post hadn't had any replies yet so responding to you will 'bump' it back to the top of the discussion list again.

There are lots of people in the group who have had, or are having, pembro so they would be able to share their experience of side effects with you if this was something you are concerned about. If so, starting a new post asking about how people have got on with pembro should get repsonses.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment 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.

Hi Nadine. I had a melanoma stage 3b removed from my shin last year. I had one dose of Pembrolizumab and developed immunotherapy induced type 1 diabetes as well as various other side effects. After a lot of research and conversation with my oncologist I chose not to continue with treatment. I now get 6 monthly scans and skin checks every 3 months. I’m 64 and confident I made the right decision for me. It’s a big decision to make and can seem overwhelming. There is no right or wrong answer in the end you need to do what you feel comfortable with.

Hi Nadire 

I was treated with pembrolizumab for a different cancer. My cancer was stage 4 having spread to my liver yet I achieved a full remission. This was in 2023 and I have remained stable. It can bring a high payload of problems (and did so for me) because of the way it works, but it’s also often highly effective. I am not aware of any other drugs that can put metastatic cancer into sustained remission in the way it does for some patients. I didn’t have other choices so the risks were worth taking for me. 

What are you advised not to do during immunotherapy eg alcohol etc

I wasn’t really given advice regarding what I could or couldn’t do. I was given lots of literature to read. For the first four weeks after my first infusion I felt great. Then started feeling unwell and ended up in hospital for a week. 

Thanks for reply, your a brave lady

I don’t think there are any particular restrictions. If you are having chemotherapy alongside it they usually give dietary advice plus advice about not being in situations where you might have a high risk of getting infections - principally to reduce the risk of you getting things like food poisoning or viruses because chemotherapy makes it harder for you to deal with things like that. Immunotherapy doesn’t usually impact your white blood cells.