A Brief Rollercoaster Ride

I have been on a reduced chemo regimen for the last several months, with the oxaliplatin dropped from my regular infusions. I had begun to experience some nerve issues that were starting to interfere with my life. My blood work has remained mostly normal with some liver enzymes elevated, but dropping the oxaliplatin has brought those back solidly into the normal range. The only problem is that my cancer markers have stopped dropping so quickly, and I’ve had a few increases here and there. At the start of December my CA 19-9, which was 5135 at diagnosis, jumped from 230 to 588. That, along with a steady CEA, was not what I wanted to see.

I wrote to my oncologist when the result came in and we both agreed that adding back the oxaliplatin would be the best option, not only because of the single result, but because the overall trend had been steady and not decreasing, and the issues I’d had from the oxaliplatin the first time around had resolved. We also moved up my imaging to see if any new lesions had appeared, or the previous sites had grown.Just for curiosity’s sake we measured the CA 19-9 again before starting the oxaliplatin and it came in at 190, a modest decrease from the number before the jump. That was great news.

CA 19-9 is a great way to track the progress with treatment, and at levels as high as mine at diagnosis a good way to narrow down the source of the malignancy, but it can be influenced by factors, like inflammation, in addition to the cancer. One of the things that can cause temporary inflammation, and thus a transient jump in CA 19-9 levels is the immune system’s response to a vaccination. I hadn’t thought of it before the lower number came in, but I’d had my RSV vaccine 4 days prior to the higher number.

I ended out 2025 with a PET/CT which showed no evidence of metastatic or recurrent disease, and described the areas on my lungs where the large masses had been as “scarlike.” That was really fantastic news.

We know from the bloodwork that there is still a good deal of active disease, but the fact that there is nothing visible on any of my imaging remains a good sign, and the numbers falling combined with adding the oxaliplatin back in makes me hopeful that the year is off to a good start. My CA 19-9 most recently dropped again, to 141, while my CEA rose just slightly. With CEA that can be a sign of a good response to treatment, a minor variation in results, or a sign of progression so I’m not too worried about it for the moment.

The only major complaint I have at the moment is hypersensitivity in my fingers and toes, along with wrinkly fingertips and no fingerprints. It makes things like writing, typing and working with rough things a challenge, along with mundane things like picking up a sheet of paper or trying to get a card out of my wallet. Fortunately we live in times with a lot of good adaptive technology, so I am seeing it as a way of learning more ways to get around these limitations.

In the meantime I’m finishing up round 20 of chemo and looking forward to some snow finally falling. I’m working to be more consistent with my cycling this year and hoping to get in a good long ride on bike to work day, which is also my birthday this year, since Sara and my first attempt at a bike-to-work-day century ride was thwarted by my hip fracture. 100 miles may not be in the cards this year either, but we’ll see what is possible. Having a training plan and something to focus on outside of chemo is a really big positive for me mentally and I really believe that being active helps so much with tolerating it well.