Stage IV diagnosis with an auto immune condition

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

I'm sorry to read that you've recently discovered that your melanoma has spread and I'm sure this must be an anxious time for you.

I don't have the experience you're looking for but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

Do let us know when you get your results

((hugs))

Hi latchbrook and thank you for the warm welcome  I have an appointment on Thursday to get my results and discuss treatment options. I'll keep you posted - I'm terrified and hopeful all at the same time! 

I'll be keeping everything crossed for you.

((hugs))

Hi Booklover,

There is a Facebook page called Melanomamates for UK based patients, it is also a great source and very comforting too.

Hope that this helps.

Thanks,

Gaz.

Hi – I don't know if you got any responses anywhere but I think this may be quite an individual thing.

One of my daughters is on immunosuppressants (was on the shielding list during COVID) and adding in treatments, not specifically melanoma treatments, can be complex. For some things, my daughter has had the option of coming off medication to allow a specific treatment depending on discussions with the relevant consultants – (getting timely responses can be difficult). For other things it can be looking at overall load, which isn't easy sometimes – my daughter unfortunately had a toxic liver reaction and can no longer take the original immunosuppressant that she was on. So, my answer is that I think it is impossible to extrapolate from one person's experience as the reply is going to depend on many things and not just considering the auto-immune meds plus the melanoma treatment but more besides. But it may be worth giving the nurse helpline on here or Cancer Research a phone call as I found them very helpful in framing questions to be asked. Sending you love because it isn't an easy situation. xx

I forgot to say that my daughter's auto-immune medication is photosensitising (increasing melanoma risks) and specialist cancer nurses have advised that with her individual overall history the immunosuppressants are hugely risky and best discontinued if at all possible. Not everyone is aware that auto-immune medication can increase melanoma risk. I don't want to discuss my daughter's individual medication on here though it is also used for rheumatoid arthritis. Hopefully you got advice from the specialists on all this already. Xx