Hello Tim and thanks for your post,

It would probably best to contact his own oncology team and talk to them about what he wants to do.

We do have some information about other ways to access treatment which you can see here

The other option is to get a second opinion and talk to another hospital about his situation. Have a look at our information on getting a second opinion here

I am not sure why his doctors decided to stop all his treatments and there might be a good reason for this but it can help to seek advice from another team so that you both feel that you have left no stone unturned.

We have a page on rare cancers on our website here

I am not sure whether he has also been in touch with NORD (National Organization for Rare Disorders) here

I can understand that this must be such a difficult time for you all and if either of you want to ring and speak to one of the nurses on the helpline then you are very welcome to do so. 

Our number is Freephone 0808 8004040 and we are here Monday to Friday 9am to 5pm.

All the best,

Catherine

Hello, what is the treatment he's considering paying for? My dad would benefit from Pembrolizumab but his doctor won't recommend it and it's very expensive