Ovarian Cancer Treatment Side Effects Make for a Difficult Balancing Act

Kelly Irvin was diagnosed with stage 4 ovarian cancer in January 2016. Catch up on all of Kelly's blogs here!

I’ve been trying to figure out how to write this blog without being an ungrateful complainer and at the same time finding a graceful way to handle an embarrassing topic. I finally decided as a stage 4 ovarian cancer patient with nine years-plus of continuous treatment under my belt, I have more than enough experience to express my opinion. So here goes:

Cancer drug researchers need to spend more time analyzing how to reduce side effects of new (and old for that matter) cancer treatments. Currently, the only way to deal with side effects is to reduce the dose, which most likely will affect its efficacy, or stop treatment all together. Many of the new targeted drugs are being developed for long-term use to hold a cancer at bay, rather than cure it. Like a chronic disease. Except the side effects have a tremendous impact on quality of life not often seen in other chronic disease treatments.

My clinical trial drug has kept me stable and/or NED for two and half years. That’s amazing, fantastic and an incredible blessing. It also means I’ve been dealing with the side effects including gastrointestinal distress — okay, I’ll just blurt it out, diarrhea — for two and a half years. I’m thrilled with the efficacy of this drug, but I routinely spend my time at appointments with my oncologist discussing how to deal with a side effect that can hit me anywhere and anytime with ugly, nasty consequences.

It means I carry around an emergency bag with disposable underwear, a change of clothes, Imodium, Lomotil and a gripper (I have limited mobility and can’t bend over) everywhere I go. The bag also includes a gas reliever and an anti-acid for the acid reflux that often occurs as well. I’ve made a mad dash for a restroom in a Dick’s Sporting Goods, in a church while attending my grandson’s preschool Christmas program and while on vacation visiting family for the 4th of July. In that instance, I raced into my nephew’s house (which has only one bathroom) in the midst of a fireworks display and stayed there for two hours.

Multiply that by 910 days and you get the picture. I plan travel (especially air flight) and social events around when I expect to have the worst episodes. I’ve completely changed my diet to a low-fiber-no fiber diet, which means no raw fruits, raw vegetables, no salads, no whole grains or many of the other foods that are so nutritious. Some people might like eating this way. I’m definitely not one of them.

Aside from the nutritional deficits, there’s also the potential for dehydration, anemia and other health impacts of chronic diarrhea.

The worst of it is this trial has been discontinued. I’m the only patient left in it because not enough women with ovarian cancer have the biomarker that makes it so effective for me. My travails aren’t going to help other women. I was eager and willing to participate in phase 1 first-in-human trials, because they might not only save me, but help other women with this rotten, no-good disease.

I feel ridiculously ungrateful complaining when so many women die from ovarian cancer every year. What’s a little discomfort in comparison? I should be blissfully content. Yet, I simply can’t manage it. Where do we draw the line when it comes to quality of life? Do researchers care? They keep track of what’s known as AE’s or adverse events. After hearing my woes, one of the oncologists at the clinic suggested they should have another category, still AE, but annoying events.

Cute, but it’s more than annoying. Not being able to leave the house for fear of an explosive episode of diarrhea is not fun or funny. It affects me emotionally as well as physically. It’s demoralizing. It becomes a sort of prison built of fear. If my stomach starts to make strange noises, my mind goes into overdrive scouting the nearest bathroom, estimating how long it will take me to get there, and mentally checking if I have all the necessary supplies. Sometimes it’s simply easier to stay home and not risk it.

I will keep taking this drug as long as it keeps doing its job. By the same token, I urge researchers to delve into why particular side effects occur in cancer drugs under development and endeavor to find ways to mitigate them that doesn’t impact their efficacy.

Is that too much to ask? Maybe. But nothing will change if we don’t speak up. Even when it’s embarrassing.

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