ACC bone metastases

Hi paul85 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 Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, 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.

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.

I thought you couldn’t have chemo as a treatment option if you had ACC? 
sorry to hear of your news but the procedure sounds positive x

When I got the diagnosis in 2023, I have asked my doctor for chemo option. He said that It provide some benefits only, so he thought I didn't need it. 

Now he think that I run out of options. There isn't a standard treatement for ACC, so after the operation and radiotherapy, the chemo will be the first line of treatment with Cisplatin+Vinorelbine (VP). He does not think about CAP or a combination of 3 agents because they are too toxicity. So VP gives me 30% of chance.

He show me a list of systemic therapy agents including Lenvatinib, but it will be the second one. And the 3rd one will be clinical trials...

Hi

Sorry to read this.

Have they considered Proton Beam Therapy at all?

I was diagnosed last year with ACC and due to having the tumour on my facial nerve, they approved for me to have PBT. I completed this in Jan 2025 so it's still early days in my journey.

Given the proximity to the spinal cord maybe it is something they should consider?
Worth asking.