Why I Chose a Treatment Break After Years of Living With Stage 4 Ovarian Cancer

A Difficult Decision to Pause Treatment

My oncologist calls it a “drug holiday.” My husband likes “medicine vacation.” What it feels like is doing back flips on a high wire without a net. For the first time since my diagnosis of Stage IV ovarian cancer in January 2016, I’m taking a break from treatment. The decision to step away from a clinical trial after 42 cycles—3.5 years—didn’t come easy.

Despite everything that led to this decision, I’m still conflicted. That’s because I faced a situation other cancer patients face regularly. Continuing a treatment that keeps me alive versus the effect the treatment has on my quality of life.

When Clinical Trial Side Effects Affect Quality of Life

I was the only person left on this clinical trial. In fact, the study sponsor has ceased to make the pills. There were enough pills left for me to continue until October. When I found out about this in May, I almost decided to end my participation then because the side effects were so onerous.

For more than three years, I lived with chronic diarrhea, fluid retention, and acid reflux, resulting in a diet that consisted mainly of carbs as I tried to avoid fiber that would trigger the side effects. My weight skyrocketed. My cholesterol numbers rose. I inched closer to being pre-diabetic. BUT the drugs not only reduced the pesky lymph nodes where my cancer cells hang out but resulted in a complete, lasting response.

I stayed on the study because I value every minute I have with my husband, my kids, my grandkids, my mother, and the rest of my family. A cancer patient doesn’t turn her back on a treatment that works. She stays the course, no matter what. That’s what I told myself.

When the Treatment Becomes Harder Than Expected

Then came June. We still don’t know exactly what caused the worsening symptoms. For two weeks I experienced explosive diarrhea that had my husband up at midnight changing sheets and mopping floors while I cleaned the bathroom and showered. I gained 15 pounds in water weight. Everything I ate went right on through. I was afraid to leave the house. My feet were too swollen to wear my shoes. My fingers were too fat for my wedding rings.

My oncologist ordered every blood, urine, and stool test there is. Everything came back within the normal range. Meanwhile my tumor markers shot up. I was certain my cancer had returned. The drug that hammered my body had stopped working. My oncologist fast-tracked a CT scan and an appointment to discuss next steps—meaning a new clinical trial.

The CT scan showed no progression—something that astonished both of us. In the meantime the symptoms abated. I lost the 15 pounds of water weight plus another 14. The fluid buildup went away, followed by the skin peeling off my feet and ankles.

Knowing When It's Time for a Treatment Break

Some may accuse me of being too graphic, oversharing, or TMI, but many of the cancer patients reading this will recognize my dilemma. With standard-of-care chemotherapy we suffer through mind-numbing fatigue, hair loss, mouth sores, nausea, vomiting, and a host of other side effects. Even with more targeted therapies, we’re still facing many of those side effects. Some clinical trial researchers are exploring the idea that pills rather than infusions might be more convenient for patients. It turns out that in some cases pills can negatively affect the gastrointestinal tract, creating a host of severe side effects.

The question becomes when do the treatment side effects become too much. That tipping point where the loss of quality of life becomes greater than the desire to stick with a treatment that keeps you alive is surely different for each person. I knew I’d reached that point when I said to my oncologist, “I just want to be able to eat an apple again.”

My oncologist, co-founder of nine Phase 1 clinical trial clinics globally, said it was reasonable for me to take time off to allow my body to rest and rebuild. Relief made me weak in my knees. No, eating fruit is not more important than being here for my family. But being too sick to enjoy spending time with them doesn’t make sense either.

Living Fully During My Ovarian Cancer Treatment Break

I’m not done with treatment. I’m not choosing hospice. I’m choosing three months of freedom from side effects, drug diaries, lab work, EKGs, MUGA scans, ophthalmology exams, injections to boost my immune system, and countless trips to the clinic.

That’s provided, of course, that my cancer doesn’t decide to interrupt my vacation. In three months I’ll have another CT scan and my oncologist (a new one since my current one has announced his retirement, to my great sadness) will determine the next steps. The critical factor here—the one that kept me on this trial for so long—is that there’s no guarantee the next clinical trial for which I’m eligible will be effective. It’s a form of Russian roulette.

So be it. I’m throwing caution to the wind. I plan to eat apples, salads, blueberries, bell peppers, vegetable stir-fries, Mexican food with salsa picante, and all the other good stuff I’ve been missing. I’ll enjoy every minute of the time I spend with family, my job as a novelist, my time with my church family and friends, and simply living. Then I’ll be ready for the next round—whatever it may bring.

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