Exercise and carcinoid syndrome

Last summer, in 2021 at the age of 43, I decided I needed to do something to be in better shape. I was feeling flabby and tired, and although enjoying the long golden afternoon of adulthood, being very aware it is a one-way street. That November I found a used treadmill and TV on Craigslist, and recruited some friends to help me haul them to my house.

My husband helped me set it all up in our basement with a Chromecast, and I was ready to go. I had read Atomic Habits by James Clear in the summer, and was very very inspired. I knew that if I wanted to make this a permanent lifestyle choice, I needed to do this almost daily. So, I started verrry small. Just a few minutes a day at a slow speed. I found that putting my workout clothes on before I went downstairs helped. Also, I played around with what to watch and what to listen. Getting a tissue box close by was good. I realized I don’t get hungry until after I’ve been up for a couple of hours, so I can get a workout in before breakfast. Lots of tricks to get my tired not-a-morning-person body moving. Slowly, slowly, my workouts progressed. I eventually got faster, and went longer. Today, most mornings I get up at 5am to “power walk” four miles at 4.1 mph, which takes almost exactly an hour. On weekends, when I have more time to spare, I can easily go five miles or more. I have tried jogging, but my body definitely prefers the power walk, and I’m willing to make that compromise.

As much as this all might sound like a humble-brag (and perhaps it is, as I am quite proud of my hard work), I’m writing this post because I find the relationship between exercise and carcinoid syndrome interesting. For the past year or two, I’ve been flushing, but I assumed I was entering perimenopause. Of course, now I know it is the metastatic neuroendocrine cancer. As I workout on the treadmill, I often have a flushing or two. From my research, it seems like exercise can bring these on, so that’s no surprise. I’m grateful that they don’t interfere much, other than to make me extra hot and sweaty, and often cause me to run to the restroom. I’m extremely grateful that right now I have relatively mild carcinoid syndrome symptoms.

Which is a great segue to the other benefit of the treadmill being in my basement: the restroom is nearby. I don’t think I’ll ever be an outside exercise person because quick access to a restroom is important to me, and I shudder to think about having a flare-up on foot, two miles from my house. I’ve been diagnosed with IBS-D for 15 years, and of course now I know carcinoid syndrome is contributing to my restroom habits.

This morning I had my first workout post-Sandostatin shot, and I’m happy to report that the sore “cheek” did not hinder me at all. Here’s hoping all my future shots/workouts will be similar!

After my surgery it will be great to have my friend The Treadmill around, as I again will slowly build up my endurance. I did it once, I can do it again!