Reality Bites

Since my last posting I have talked with a number of people and received a lot of information. It became clear there were several theoretical options available to me, the standouts being a BRAF inhibitor and a drug called ipilimumab (also known as Yervoy I think). I went to see the local melanoma expert last night and it was pretty apparent to him that I was not in good shape as I was clearly in pain and discomfort. A fairly simple exam revealed a rather swollen liver and he has now put me on a combination of steroids and stronger pain meds. This should allow at least part of my old self to surface again.
We discussed getting onto a BRAF inhibitor drug trial. There are no open trials in NZ and one that was sounding promising in Sydney cannot take non australian citizens. This leaves the option of trying to buy the drug but this is challenging. The drug is undergoing approval processes which means there is very little access to it at the moment. This will change once licenced but it is unclear when this will occur. At the moment several people are trying on my behalf to get me some access.
The other drug ipilmumab cannot be considered an option at this stage as my liver is too compromised to be able to handle it. I am also too unwell to travel to any overseas trial and it is unclear what those trials should be as there is little evidence to suggest any really good ones at this stage.
So the current plan is to remove my pain burden which should improve my energy levels so I can function more effectively. And I await one of my international team of Helpers to work wonders and deliver up an appropriate BRAF inhibitor for me. Good luck to them - I know they are working hard for me and I am very grateful.