TL:DR Back on schedule with the nivo 4 weekly
When we started nivo monotherapy we went for a half dose every 2 weeks, instead of the full dose every 4 weeks. I only had a couple of cycles scheduled due to the uncertainty of how my body would react, following the previous interstitial nephritis. This is because people who have experienced an immune related adverse event are likely to experience another one. I was advised if it happened again then this treatment would be withdrawn. Too risky otherwise. The plan was two cycles followed by a check-in with oncology to discuss the next steps. The next steps might be continuing or stopping nivo, changing to tivozanib perhaps or a watch-and-wait approach.
At the end of cycle two of nivo, the final step was to complete the paperwork with the nurse specialist and book my next bloods. I explained I needed bloods in 2 weeks but there wasn’t a treatment planned for that week. It was a nice surprise to learn that cycle three was already scheduled.
I had my check-in with oncology the day before cycle three. I wasn’t sure whether the treatment was provisional or definite. There, I learned that my albumen and platelets had returned to “normal” levels. I wasn’t aware these had declined with the kidney function to be honest. The plan is to return to the standard nivo schedule of 4 weekly and also that perhaps another immune adverse event would not be curtains for nivo as a continued treatment option. Clear as mud then, in a positive way! But definitely .
Back to the root cause of all the uncertainty / negative reaction. Was it the ipilimumab or the nivolumab? I’m still on the nivo (3-2 to me, then!) YAY. My oncologist isn’t sure it wasn’t the nivo. Basically we don’t know for sure, but it doesn’t matter, because we are back on schedule. ** GET IN !!! **
I’ve now had 4 cycles of nivo monotherapy, 3 at the 2 weekly intervals, and 1 at the “normal” 4 weekly interval. My next CT monitoring scan is in a couple of weeks.
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