They do say cancer is a rollercoaster ride. It certainly is! Last week (22nd June) I had my first nivolumab mono-therapy dose which should have happened on May 4th 2022.
I was my oncologist’s top patient with no impacting side effects and I was having a good response to the ipi/nivo. Everything was going to plan.
Quick catch-up on why it all went pear shaped. My positive response to ipi/nivo has stimulated an auto-immune reaction in my kidneys. The kidney tubules have become inflamed and the kidneys can’t do their job properly. Instead of waste products (creatinine) being purged from the system, they are retained in the blood. This was shown as falling eGFR (estimated Glomerular Filtration Rate) and rising creatinine in my blood tests. Fluids were released when my system really needed them, thus invoking the “give me more tea and orange squash” messages and the subsequent excessive thirst I was experiencing.
The steroid prednisole 30mg daily slowly did its thing. Too slowly. After a few days my creatinine was lower and I began the taper after 7 days. YAY! My body clock is clearly aware of what’s going on and I am awake at 6:45am daily to take the prednisole. The satisfaction on the days I drop my dose by 5mg is real. But the taper is slow going too. This period felt like the “start” again, before treatment, before the diagnosis, the waiting, when days passed by at snail’s pace and there was always something important on the horizon but it was always too far away. Didn’t like it. *SNIFF*.
I know that delays to ipi/nivo don’t change the final outcomes. I have read the trial reports. I also read that people who experience this are also the best responders to treatment. But I can’t migrate this into the emotional part of my brain. I am just desperate to get on track with the nivo. I am pragmatic and accept pretty much everything else with my cancer. I now accept that steroids are probably going to become my reluctant acquaintance on-and-off, but I just want the nivo. Regular drugs has become part of my regime.
I was worried about the side effects of the steroids. Here is my experience:
1/ I didn’t get to sleep until 3am or 4am. But “sleep is for wimps” right?!! When I’ve not been able to get to sleep before, (due to something winding me up, or work/life problems) I’ve caught up the next night. On the steroids, it was a pattern for 2+ ish weeks. But I never ended up tired as a result.
2/ I felt irritable a few times. I wasn’t sure if the steroids were the cause.
3/ I felt really down, once. Again, I wasn’t sure if the steroid was the driver. It lasted a few hours, I had words with my husband over a stupid thing (recycling) and I cried. This was bonkers and so not me.
4/ I felt a bit weird (light headed) quite a lot. Was this the steroids, or my paranoia? No idea.
My prior mental anguish from taking steroids I attribute to my rational, logical side of my brain having to over-rule my emotional side.
I have also sorted out the “control” side of this whole space by looking at it from a RACI perspective. Responsible, Accountable, Consulted, Informed, if you are not familiar with this. It’s a model we use in the business/work environment. I am Responsible (for taking meds), Consulted (on the options if there are multiple ones), and Informed (blood results) but my oncologist is Accountable (for approving nivo medication), and Responsible too.
Back to the prednisole. I had a wobble halfway through. I felt somewhat left in the dark, hanging on a piece of string. A weekly checkpoint meeting (or so I thought) didn’t happen causing anxiety. I phoned in to find out what was happening and to get my creatinine levels (give me my data!). I learned the next trigger was normal creatinine, normal eGFR levels and <10mg prednisole before we could consider restarting nivolumab.
This started a weekly mission to monitor my blood tests and an excel spreadsheet was started. The resulting graph is attached. Got to love a visual illustration. 
Eventually the course of prednisole ends. Yes!! eGFR and creatinine are acceptable, if not returned to the pre-treatment levels, and my oncologist M and I Finally (BONG) have the discussion to restart nivo. He suspects the nivo has caused the interstitial nephritis based on what’s been reported in the medical white papers. But I’ve read the same or similar stuff on pubmed and I’ve seen ipi alone causing it too. Basically, the jury is out and in his own words “there is a lot of uncertainty right now”. However, the bottom line is if it happens again, the ipi-nivo will be withdrawn. Boo! This is a bit sad 
. Being one of the younger people on this treatment, I was going for the record. I saw myself as being on my level 1 treatment 5 years down the line, outlasting my prognosis. Boo again! But these are all “maybes”. Let’s not get ahead of ourselves. I’m 1-2 down against oncology at the moment (see previous blog). If I manage to continue with the nivo that’ll be a WIN for me (because M has declared for nivo), of goal-of-the-month 
magnitude LOL.
Longer term he has a TKI (tyrosine kinase inhibitor) in mind as a next treatment option, as well as a watch-and-wait strategy. We briefly discuss these and it’s a takeaway for me. I start stock-piling the questions for when it’s time to consider this.
I also get to see all my CT scans (Nov 21, March 22, June 22) alongside each other. I took a picture on my phone! We peer at the screen together looking at the fuzzy grey bits and decide it’s shrinking. It’s all a bit subjective for me, “how do we know we are looking at the same cross-section?” for example. But I file these thoughts for now. The outcome is the ipi/nivo is doing its job and the cancer is behaving as it should. This was confirmed by radiology a few days later.
Now we have a way forwards with the nivo, the next thing to fix is my excessive thirst which remains unchanged. That will probably be the subject of my next post as we’re On. It. Now.
