Thanks everyone, unfortunately i have found these websites before, i think i will consider flicking off an email, not sure where to start with it all, but anything is worth a try,i am confused though as his specialist told him his remission would be for 20 yrs,and yet on facebook, many have had it come back, he is rare case here though, which makes it all that much more serious, as they are not really experts in dealing with it, that is why i am thinking of the US or UK, because there are so many more people over there who have had it.

Still very worried about this new drug infusion next week,the side effects are pretty awful.