For the first year, treatment was pretty smooth. Aside from a little fatigue the day of infusion, I had little to no side effects. I felt really pretty good, was able to live my life normally, and stayed busy with my kids and all kinds of physical activities.
About a year after I started treatment, I started experiencing increased fatigue and shortness of breath, all the time, even laying down.
In the beginning of May 2017, I was diagnosed with pneumonitis, a rare side effect, which basically meant that my immune system was now in overdrive and my lungs were cloudy with white blood cells. I was treated with a course of high-dose steroids for about two months, tapered down and came off of that rollercoaster in time to sing for my brother’s wedding. I sang for the wedding on July 1, but the next day I had a fever and went back to the hospital. X-rays showed the pneumonitis was back with a vengeance. I went back on the steroids and tapered down more slowly this time. By early October, I was down to a very low dose of steroids, riding my bike, and feeling great.
A month or so later, we took a family trip to New Mexico. I felt tingly in my face and neck on-and-off while we were there. I thought it might have been the altitude., but on the plane heading home, I had a hard time breathing. They had to announce over the loudspeaker, “Is there a medical professional on board?” A registered nurse sat next to me and held an oxygen tank for me.
I started another round of steroids right away, and this time, I asked for specialists to intervene. This had gone on too long. My oncologist brought in a rheumatologist and a pulmonologist. They did a lung biopsy, respiratory functioning tests, and bloodwork for autoimmune diseases that they suspected could have been triggered. But nothing showed up. I just had to wait it out.
Meanwhile, my lymph nodes were shrinking, but my blood sugars are off the chart. (Did I mention I’m also a diabetic?) The steroids wreaked havoc with my blood sugars, and sometime before the holiday in December, I end up in the hospital for borderline ketoacidosis because we realize the steroids messed with one of my diabetes meds. We got my sugars under control, but then I had what they call “moonface,” “round belly,” and my personal favorite, “buffalo humps,” from the steroids as well. I had never heard of these things and I’ll be glad to never have to deal with them again. (Although, of course, I had to renew my driver’s license on my birthday in December that year, so I’ll have that photo to remind me for a while.)
All kidding aside, those side effects subsided, but the pneumonitis stuck around for a total of 8 months. (I was told the typical duration was maybe three weeks and the rate of occurrence was maybe 3-5%.)
But I survived! And by the following summer, there was just one little pesky lymph node that didn’t seem to want to shrink, so we just continued to watch it for the next several months until finally, my oncologist said, “why don’t we just remove it and let you get on with your life?” (or something like that).
Removing it meant a hemicolectomy because of the way the veins are wrapped around the colon there. We thought, “ok, fine! But let’s do another colonoscopy and see what’s going on in there now post-treatment, right?”
I don’t know about you, but I stay semi-awake for my colonoscopies. I mean, I had to see this one for myself! Just in case you don’t know, you cannot see what is happening inside the bowel with a CT, which I was getting every nine weeks. So we were just assuming the tumor in my colon was also shrinking like the lymph nodes we were watching on the CT scans. I hadn’t had a colonoscopy in three years since my initial diagnosis. And guess what? My gastrointestinal doctor couldn’t even find scar tissue from where the original tumor was. It was completely gone—not a trace! She was practically giddy! When she called me the next day with the official lab results, she said the lab had to call her back and double check that this was a stage 4 colon cancer patient. They couldn’t believe it.
A few months later, my oncologist told me they have been finding that, sometimes, more severe side effects indicate a patient’s tumor would have a stronger and more durable response to immunotherapy. I haven’t seen the paper on that with my own eyes, but I’ll take it.
I did end up having that hemicolectomy in April 2019 and have had no evidence of disease since then and still going strong!