Treatment Stress Has Its Limits

The subject of stress comes and goes as a top-of-mind item in my lung cancer arsenal. It is, at least partly, dependent on the treatment I am undergoing at any given time. Some forms of treatment are relatively innocuous. They produce few side effects and don't impede one's normal life activities much at all. Even some of the more strident treatments like surgery, chemotherapy or radiation may produce more pronounced side effects, but the patient can focus on the end point that is in sight. This may not make it physically easier at the time, but it can help to reduce the psychological impact and stress burden that inescapably builds.

New Treatment, New Side Effects

I am now participating in an open-ended clinical trial of an immunotherapy drug plus a new trial drug. I was excited to be accepted as the first patient worldwide in this Phase 2 trial. I would be getting drugs that would hopefully help to keep my cancer from progressing, even while I serve as a scientific subject who can help researchers find new and better ways to treat patients in the future. That's exciting stuff. But, it also brings with it new and possibly unknown side effects with no definite end in sight.

In my case, no previous treatments I've been prescribed have caused gastrointestinal (GI) side effects, and I have been very thankful for that. Perhaps not surprisingly, I finally met my match in that arena. This new drug, or possibly the combination of it with the immunotherapy drug I'd been on for many months previously, hit me hard. I developed a cough that took months to get under control. My middle back felt as though it was breaking before we lowered the dose by one third. I developed foot sores somewhat akin to hot spots. And finally, the GI side effects struck with a vengeance. If I wasn't vomiting, I was rushing to the bathroom with severe diarrhea. This went on for months, even with drugs that were given to me to try and resolve the problems.

Quality of Life Considerations

One by one, with the help of various changes in amount and time of dosing and prescription drugs, the problems did eventually stop...that is, except for the diarrhea (what I prefer to call "lower GI issues" just because it doesn't sound as obnoxious). Now, eleven plus months into this trial, I am still challenged by this never-ending side effect. For someone who has always been physically active with a penchant for all kinds of travel, it has stopped me in my tracks. My body has been entirely unreliable and I feel unsafe, so to speak, regarding travel by any form of mass transit.

Yes, I still go to work every day. I do my best to not show what goes on behind the facade. Maybe that is why the stress of dealing with these challenges day in and day out sometimes bubbles over and requires me to open the psycho-emotional steam vents enough to lessen the pressure for a time. It also causes me to think long and hard about how long I will put up with this challenge, if it does not soon resolve, before I inform my medical team that it's time to move on to something else.

Quality of life (QOL) is a term used in cancer care, and sometimes patients need to give more consideration to this when making treatment decisions. Being tough and forging on has its limits.

Editor's Note: We are extremely saddened to say that on June 8, 2019, Karen Loss passed away. Karen was a valued member of the lung cancer community and an incredible advocate and avid writer. She will be deeply missed.