It’s two and a half weeks since I became aware I was having a serious adverse immune event to my kidneys related to my immunotherapy, a PD-1 inhibitor. I continue to try to do everything I can to manage myself to whatever is my best possible outcome. It’s been a bit of a roller coaster ride so far, where sometimes it seems my biggest problem is preventing my oncology team from over reacting to single data points.
The overall management plan seems to be
1. Have me on high dose steroids to reduce the inflammation in the kidneys, both to help reduce creatinine levels and buy as much time as possible for the kidneys to recover as best they can.
2. Try to keep me as hydrated as possible. Also helps cell saturation and therefore any measures where you are looking at parts per volume.
3. Try to wean down the steroids without respiking the problem.
4. Gather lots of test data for renal.
5. Admit me for fluids upon a slightly adverse increase in creatinine and press the panic button to get renal department involvement if a more material change occurs.
I have been faced with an over enthusiastic specialist registrar who had discussed my case with lots of people at a conference. Net net, she became keen to try a more substantial steroid withdrawal programme that she had picked up from someone who had no sight of my data. I had to gently row her back to protocol.
Faced with my first (fairly small) increase in creatinine I received urgent messages to attend the hospital complete with packed bags for admission. Same registrar in a panic because she couldn’t reach either the consultant or renal to get clear guidance, and was covering her bases. I got my bag of fluid, some more blood tests and to return home.
No-one seems to understand or explain the physiology of what’s going on to me. The data and evidence I can see suggests my kidneys are actually over stimulated and pulling too much fluid out. I spent several days tracking liquids in and out, and whilst my measurements can’t be wholly reliable, it always reads that more goes out than in. I can also see the evidence in the reduction of oedema in my radiotherapy damaged boob. One helpful by-product I suppose. I do regularly feel thirsty despite drinking vast quantities a day. If the rare occasions I sleep well precede a blood test, I can see in the results the effect of drinking less overnight.
So I still have no idea as yet where this leads. I remain on 50mg prednisolone for now, with review after the weekend (making at least 10 days on this step). I am laser focused on avoiding becoming diabetic. I am trying to avoid being stressed as that seems to drive more fight/flight response than I am used to. A simple trip up over some hanging bedding that caused me to have to stop myself from falling by using the bedside table caused a full on panic attack only ended when I vomited up some bile. I have excel spreadsheets and graphs on every measurement I have.
Meanwhile the liver MRI is scheduled, but unfortunately they won’t risk contrast dye so it won’t provide full information. Hopefully that will be a big reveal on whether Pembrolizumab has been enabling my immune system to finish off the cancer whilst it’s been busy trying to finish off me.
I joke with the team that Merck are using me as a live training case study in PD-1 inhibitors. It’s a good job my sense of humour remains intact
