New Treatment, New Side Effects - Part One

We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.

When I stopped my chemotherapy infusions after nearly three years, I made a list of the side effects that I would not miss. For the record, there was no corresponding list of side effects that I was going to pine for, wishing for their speedy return, but there were a few that I thought would likely continue, or linger. As I made my list, I also pondered the anticipated side effects from the new therapy I was about to start. It was a good time to consider the trade-offs, and, later, the list provided an interesting reference as I compared how I felt with the new treatment versus the old chemotherapy that I had become quite used to over 40 rounds.

What I Won't Miss

Topping my list of side effects I was ready to say goodbye to were these gems:

• My uncontrollable gag reflex
• Consistently oily feeling skin
• Swollen ankles and feet
• Neuropathy

Of course, although not precisely a side effect in the medical sense, I also was not going to miss the constant poking of needles, because the new treatment is pill-based.

There were lesser annoyances that I was ready to shed as well, but those were the list toppers, the things that I thought were most annoying to me. What I didn't realize is that the list was wrong -- but that was something I would not be able to see until the experience of chemotherapy clearly was in the rear-view mirror.

Gag Reflex

I had been fortunate in the sense that my chemo only had a fairly moderate impact on my digestive system. I was not constantly nauseous, I rarely felt the impulse to vomit, and for the most part, I ate, shall we say, "healthy portions" at mealtime. Unlike some patients, I gained weight (and grew my hair) and was able to enjoy a varied diet. But when it came to brushing my teeth or if I smelled something rancid, my gag reflex would kick into overdrive and there was a good chance that anything still in my esophagus would make a repeat appearance. Every day for well over two years, I fought that reflex multiple times with some level of success, all the while wishing I could just clean my darn molars or scoop out the cat box without sounding like I was fighting with a hairball. It might have been good for my abs in lieu of the gym, but I don't think my wife ever got used to the sounds of my struggle not to regurgitate.

Oily Skin

The grimy feeling on my skin was strongest the week following my infusions, as my body tried to purge the toxins through my pores. I could not shower the sensation off, and I was certain that I smelled horrendous. Even though I was especially sensitive to odors, especially strong chemical scents, I was drawn to stronger and stronger deodorants. My wife told me that I smelled like bleach but all I could do was be grateful I did not smell like, well, myself.

Swollen Ankles and Feet

My swollen ankles and feet were something that never had a full explanation. I had no blocked veins, my kidneys were working normally, and I was often able to put my legs up. Yet, I frequently had uncomfortably swollen lower appendages. This was always attributed to the chemotherapy and, indeed, appeared to get worse in line with my treatment cycle. Also, with time, it increased in both intensity and duration. Fortunately for me, walking a lot would reduce the swelling, and as soon as I was done with chemotherapy for good I was able to get a whole lot of walking in, and I was eager to see that disappear.

Neuropathy

Neuropathy went hand in hand with my swollen feet. I never had it bad, but it definitely progressed over the course of my treatment; I was more afraid of increased neuropathy than I was of my other side effects. While I took folic acid to support my nerve development, it haunted me constantly.

To read about the surprise twist in my experience of swapping one group of side effects for another, look for Part Two of this article!

Editor's Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.