And just in ... another update from Rob posted last night 'So an...

And just in ... another update from Rob posted last night

'So an interesting twist - and a bit of a long update sorry. After my 3rd trial treatment last Tues (9th), about 3 hours later I ended up back in ER with a fever and non-stop vomiting, plus tachycardia and slightly desaturating SpO2. They started a sepsis protocol, gave me antiemetics and fluids, and I started almost immediately feeling better (probably too fast for it to have been sepsis really). Once stable after about 7 hours in a very uncomfortable resus bay, they admitted me onto the ward.

Now the problem is, that was a week ago and my liver markers all keep climbing dramatically. Eg GGY is over 700, ALT/AST over 400, bilirubin over 90 (>5 in the US). Last CRP I saw was 90 but I’m sure it’s gone up a lot since then. LDH also deranged. I’m mildly jaundiced and a bit itchy. Very pale stools. Basically a textbook case of a very unhappy liver.

Interestingly I was also mildly neutropenic when I left ER (>1), which is hard to explain. I believe that’s resolved now though.

I had a CT and MRCP which show there are no problems with my liver’s workings - no obstructions, blockages, significant tumour growth, etc. So the liver surgical team has checked out as they can’t offer anything, and handed me to upper GI. I’ll see them today to see what ideas they have (maybe some steroids if it’s inflammatory or immune-mediated from the trial?).

Some positive news - my markers seemed to level out a bit yesterday, and my CRP fell for the first time in a while. It would be amazing if things would start generally improving in that respect today. Also the trial (amazingly) is happy to continue as long as I’m clinically well - they aren’t too worried about liver function given the treatment isn’t cytotoxic (though we do want to first be sure this isn’t inflammation from the trial drug). Finally, I have no nausea, vomiting, pain, or fever - so things aren’t too bad there. Obviously they’re watching me very very closely for signs of developing potential sepsis.

So… at the moment it’s one day at a time, keep tracking liver markers, and I try my best to avoid eating hospital food. Any suggestions to help a very very angry liver are welcome!

Rob"

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