High liver function

Hi 

I've been on ipilimumab / nivolumab since mid Jan 2022.  After my first 4 cycles my ccRCC is regarded as under control by my oncologist and shrinkage in both the kidney mass and the lung metastasis. I'm his top responder with no side effects.  Well, I was. . . .   

During my 6 week scheduled break from treatment I started to feel bleugh again, like pre-treatment.  Lethargic, no energy, no appetite, losing weight again with excessive thirst.  Bloods showed kidney function in the amber zone.  My creatinine levels (waste products in the blood) rose to 140 (high is bad)  and the eGFR (kidney function filtration rate) down in the 30s (normal is above 60).  Acute interstitial nephritis has been diagnosed - inflammation in the kidneys, impairing their function.  The suspected cause is my fab response to ipi/nivo causing too much inflammation.  Ha!  

My next treatment of nivo monotherapy was scheduled for 4th May.  It's been postponed until the kidneys are functioning in a normal way.  I've been on steroids (prednisolone 30mg daily) for a week now, and creatinine now falling.  Just started a 5mg taper every 5 days today.  Still drinking all the tea in china though, no improvement with the polyuria yet and I'm reading it could take 2-3 weeks for the kidneys to recover.

Going forwards longer term, (hopefully I will get there!) we'll change the nivo to every 2 weeks instead of every 4 weeks with a lot closer bloods monitoring.  Unlike you, we don't know which drug is the culprit.   

Looking at the Big Picture, there have been trials that show delays and interruptions to immunotherapy don't impact the final outcome.  My biggest upset in all this was having to take the prednisolone *sniff* 

Keep us posted how you get on.  I hope your body can recover quickly itself.   

Thank you for messaging me, and hopefully we will both get sorted and back on track as soon as poss!!! Good luck xx

Hey - can I clarify, is it your liver or kidney function that is the problem?  

Hi Mmun,

 I was two months without treatment and for the two months was admitted to hospital twice for blood and kidney function problems, I was so bad I had diarrhoea for several weeks, I had low kidney function, low sodium and low cortisone I have been put on I am now on hydrocortisone tablets now not sure how long for but they seem to be working fine I like you was not sure about taking steroids and don’t want to be too long on them because of other side affects you get for them. Hope you get sorted quickly as I am now on my new chemo combo tablets and have been for last six weeks, so far only very dry mouth and skin should be having a scan in July to see if this is working take care Sandy 

Liver function, it’s been playing up since before I was diagnosed, and I had got it down to 34 (33 being normal), so was on cloud 9 thinking things were going well, my scan results came back positive and then bang my liver function decided to play up and go to 110!!!  We have been away to Turkey and I did have a cocktail or two so I’m hoping it’s that!!!x 

Yes, hopefully drinks have caused it to spike and you can get back on track Sandy