First Chemo/Immuno Cycle Complete

Before starting this post, thank you to everyone who’s taken the time to read the blog. As always, we are thankful and grateful for your support. This will be a relatively brief update on the heath status and treatment plan. I still need to provide more fun updates, such as more pictures of Aiday and Charles. Two activities that Charles is currently enjoying are cleaning and climbing. I promise those will come soon.

In summary, the first cycle of chemo/immuno is ending, and I start the next cycle on Wednesday, 4 May. Overall, I feel pretty good. I am glad to have tolerated the treatment fairly well so far, as things could definitely be worse. The side effects have been mild overall, and I haven’t required any additional intervention. Importantly for me, I can still eat and taste as normal, with no mouth sores. (Since there is still the possibility of radiation later, I can rationalize eating all my favorite foods while I can.) Hopefully the rest of the cycles will be like this, though I’m not sure if the cumulative effects will take their toll.

One positive is that I am noticing reduced ear pain. I’m hoping that is a sign that the drugs are working to shrink the tumor and not just wishful thinking on my part. One concern, however, is that the drugs have had a negative impact on my blood counts, meaning I had to skip the day 8 infusion, and there is likely a dose reduction in the future. We’ll find out soon.

As a reminder, the treatment plan for this phase consists of up to six 3 week cycle of drug therapy, with two infusions each cycle (day 1 and day 8). On day 1 of the cycle, I get infusions of the all the cancer drugs (gemcitabine, carboplatin, Keytruda), along with drugs to combat the expected nausea and fatigue. That is ~3-5 hour session at UCM (including waiting time). On day 8, I get another round gemcitabine, one of the chemo drugs. This is not expected to have as many side effects. Then the third week is a sort of recovery week until the cycle starts again. This is different than my previous radiation treatment, where I was getting treatment everyday.

Infusions will go through a vein in my arm (vs. a port)

I was a bit nervous about how the first cycle would go, as how my body would react to the drugs wasn’t known. While I’d been given carboplatin before, the previous dose was much lower than this treatment and of course, I haven’t been exposed to gemcitabine or Keytruda before. I was able to avoid most of the known side effects, except for the expected nausea and fatigue.

During the first week, I felt fine the night of the treatment and surprisingly energetic the next morning. I think the pre-treatment drugs helped a lot. But once those effects started to wear off, fatigue started to set in 36-72 hours post-infusion. Even during this fatigue period, I was able to do some yoga classes and want to continue that. The classes seem to energize me and I feel better after doing them. However, this means that when I get future infusions on Wed afternoon, I’ll like have some fatigue through Sunday, which unfortunately part of the weekend when we could be doing activities with Charles.

Besides fatigue, I had some mild nausea. For me, it felt like a general malaise, with a mild headache and my stomach churning, as though I’d eaten something that didn’t agree with me. Fortunately, I avoided the vomiting itself, the feeling like I was going to vomit, a fever or other illnesses that would affect me more. As mentioned before, it could have been much worse. I only needed to take a few Zofran (anti-nausea medication) during the week - usually just at night to make sure I could sleep through the night.

There was a little setback in the second week. Even though I physically felt fine, the blood test results showed low white blood cell counts (WBC) and absolute neutrophils, meaning my ability to fight infection was reduced (and I need to be more vigilant about avoiding illness). It was low enough that I couldn’t receive the day 8 gemcitabine infusion. The care team said the infusion would be skipped entirely and not made up. However, if this happens for the start of a cycle, they may push back by a week. To help with my blood counts, I had to do three self-injections of Zarxio, a natural drug to help stimulate neutrophil growth. I think this will be part of the treatment plan going forward.

Currently, I’m in this third week of the cycle, so I am feeling pretty close to normal, with good energy overall. I have been able to do engage more with work, which I quite enjoy. The work I’m focusing on now requires some data science and programming. I always enjoy learning and these are new skills, so when I (finally) get little piece code working in Matlab or Python, or figure out a useful query in SQL, I get a little excited. Not quite as excited as seeing Arsenal being back in a Champions League position, but enough for a small fist pump.

That’s about it for now. Hopefully the next cycle will follow a similar path and I can continue to maintain a normal schedule, which includes work, cooking, chasing Charles around, exercising, and more.

Thank you again for reading your continued support.