Living on Verzenio: What the Pamphlet Doesn’t Tell You

A daily pill has helped transform outcomes for hormone receptor-positive breast cancer, but navigating its side effects takes real-world know-how. Debbie Ciak's story shows why listening to your body and speaking up can make all the difference.

SurvivingBreastCancer.org  |  Breast Cancer Conversations | By Laura Carfang

Debbie Ciak, 75, lives outside Pittsburgh. She was diagnosed in early 2023 with stage 2B ER-positive, HER2-negative breast cancer after noticing an indentation in her breast one morning after a shower. Debbie's Ki-67 score was 57%, indicating an unusually fast-growing tumor. She underwent a single mastectomy and radiation. When her oncologist strongly recommended Verzenio to reduce her high risk of recurrence, Debbie didn’t hesitate.

It was her second month on Verzenio when Debbie first noticed something was off. She’s a walker, and she began noticing that climbing hills was harder than it used to be. Then came the stairs. “I started to notice going up steps... just a little bit of shortness of breath,” she recalls. She reported it at her next appointment. Nothing was done.

What followed was a months-long medical odyssey that would take Debbie through an ER visit on the day before Thanksgiving, three different pulmonologists, a bronchoscopy with ten biopsies, and a diagnosis of drug-induced pneumonitis (permanent lung scarring) that her pulmonologist now describes as feeling like “a straight jacket” around her lung. She will never be able to take a fully deep breath again.

Debbie tells her story not to frighten anyone, but because she believes deeply that if she had known what to watch for, things might have gone differently. “You’ve got to listen to your body,” she says. “When something’s telling you it’s not right, don’t just let it go. You’ve got to pursue it until you get some answers.”

Extra protection from Verzenio

Verzenio (abemaciclib) belongs to a class of drugs called CDK4/6 inhibitors. By blocking proteins that cancer cells depend on to divide and replicate, these therapies can meaningfully slow or stop tumor growth in ways that hormone therapy alone cannot. For patients with HR-positive, HER2-negative breast cancer at high risk of recurrence, like Debbie, whose Ki-67 score came back at 57%, signaling an exceptionally fast-growing tumor, Verzenio can represent a crucial extra layer of protection.

As Debbie understood it, Verzenio was her best extra line of defense against recurrence. The drug carries known side effect risks, but she was “willing to take that risk,” she says. “I want to continue to live my long, full life.” But she also walked into treatment without a full picture of what the drug could do, and she believes that gap cost her.

For many patients, Verzenio is a pill taken every day for years. What it does to the body day-to-day matters enormously.

The side effect everyone talks about — and how bad it can actually get

Ask anyone on Verzenio about side effects and the conversation starts in the same place: diarrhea. Debbie is no exception. “The diarrhea was terrible — three or four times a day, no warning. I literally almost could not leave my house.” She became severely dehydrated, her kidney function became elevated, and her hemoglobin dropped. She needed five hospital infusions for dehydration in the first month alone.

All the while, her weekly check-in calls from the nurse practitioner came back marked “normal, normal, normal.”

GI symptoms are real and, for some patients, genuinely disabling in the early weeks. There are strategies that help (careful hydration, anti-diarrheal medications started proactively, smaller meals, easy-to-digest foods) and for many patients, symptoms do ease as the body adjusts. But Debbie’s experience is also a reminder that “common” doesn’t mean “minor,” and that patients shouldn’t have to white-knuckle through symptoms alone.

Practical strategies to manage GI side effects

• Ask your oncology team about anti-diarrheal medications before symptoms start

• Stay well hydrated throughout the day; consider using electrolyte drinks

• Eat smaller, more frequent meals rather than large ones

• Focus on low-fiber, easy-to-digest foods during flare-ups

• Track symptoms carefully: timing, frequency, and triggers to help your team respond faster

  
  

One note worth flagging: Debbie had been prescribed Verzenio at the highest starting dose of 150mg. She had questioned this at the time, but was told the logic was that if problems arose, the dose could be reduced. Since then, she says, protocols have shifted — many providers now start patients at lower doses and titrate up. If you’re starting Verzenio, it’s worth asking your oncologist about current dosing approach and what flexibility exists.

The side effect that changed everything: ILD

Among Verzenio’s less common but more serious potential side effects is interstitial lung disease (ILD), also called pneumonitis. In plain language, this is inflammation in the lung tissue that can reduce its flexibility and make breathing feel more labored. The FDA issued a warning about this risk in 2019. It appears in the drug’s prescribing information. It is mentioned, in small print, at the bottom of Verzenio advertisements.

Debbie had sat through a mandatory hour-and-a-half session with a pharmacist and nurse practitioner before starting the drug. She does not remember anyone discussing shortness of breath as a serious warning sign. When she arrived at the ER with respiratory symptoms two months into treatment — at the same hospital system where her oncologist practiced, with access to her full medication record — the clinical team checked for a pulmonary embolism, ruled it out, and sent her home with an antibiotic. Nobody called a pulmonologist. Nobody flagged the drug she was taking.

“I think there was a total unawareness of the possibility of what the drug I was taking might have been doing to my lungs.” — Debbie Ciak

It was Debbie herself who, over that Thanksgiving weekend, searched “FDA alert Verzenio” and found the 2019 warning. When she called her oncologist Monday morning and shared what she’d found, she remembers “total silence on the other end of the phone.” Her oncologist told her not to take the drug again.

By the time Debbie reached the third pulmonologist — the first two either didn’t know about CDK4/6 inhibitor-related pneumonitis or treated it generically — the damage was done. Steroids that might have helped were too late. She now has pulmonary fibrosis and has completed 12 weeks of pulmonary rehabilitation. She has undergone regular pulmonary function tests ever since.

“Now it's in my chart,” she says. “Nobody will ever prescribe anything like that to me.”

Tell your care team right away if you notice new or gradually worsening shortness of breath, especially with activity that felt easy before; a dry cough that’s new or persistent; chest tightness or a sensation of not being able to take a full breath; noticeably reduced stamina on walks, stairs, or daily tasks. These symptoms have many possible causes, but they require prompt evaluation, not a wait-and-see approach.

What Debbie wishes the system had done differently

Debbie is measured and thoughtful when she talks about this. She isn’t angry. But she is clear about the gaps she experienced: a care system where specialists operated in silos, where an ER team looked for the one thing they were asked to rule out and stopped there, where a known FDA-listed drug side effect wasn’t on anyone's radar in the room.

“Everybody’s in their own little silo and only looking at one thing,” she says. “The nurses at a different hospital would have been more on top of what was going on. It’s a big lack of education piece.”

She later participated in a medical webinar on ILD and CDK4/6 inhibitors, as the patient voice alongside an ER physician, a radiologist, and a medical oncologist. All three agreed: this is a significant and underrecognized issue, and clinicians need better awareness of what to look for when imaging a patient on these drugs.

Movement as medicine: Debbie’s path forward

Here’s the part of Debbie’s story that matters just as much as the warning: she didn’t stop living. Despite permanent lung limitations, she walks. She practices restorative yoga. She does Pilates. She is enrolled in a cancer and exercise research study through Colorado State University. She credits the SurvivingBreastCancer.org virtual exercise program and a local Pittsburgh organization called Cancer Bridges with being central to her recovery.

“Exercise has been very important to me in my recovery — which is the one big positive change since having cancer, because I was not an exerciser before,” she shares. Her pulmonologist put it bluntly: “You can’t be sedentary. It would only make it worse. You have to keep active.”

She schedules her classes the way she schedules medical appointments, because that’s what it takes. “I’m one that’s had to put it on the calendar.” For anyone who struggles with motivation during treatment, that framing alone is worth something.

Questions for your next appointment

Ask your oncologist before or during Verzenio treatment

• What starting dose is recommended for me, and what’s the reasoning?

• What respiratory symptoms should I watch for, and how urgently should I report them?

• If I go to an urgent care or ER, what should I tell them I’m taking?

• Are there supportive medications I should have on hand from day one?

• What is my bloodwork monitoring schedule, and what are you watching for?

• Should I be tracking symptoms between visits? How detailed should those notes be?

  
  

The bottom line

Verzenio is an important drug. For patients at high risk of recurrence, it may be the difference that matters. Debbie knew that going in — and still believes she made the right choice in trying it, even knowing how it ended for her.

What she wants other patients to have is what she didn’t: a full picture, a care team that communicates across specialties, and the confidence to keep pushing when something feels wrong. “Keep asking those questions,” she says, “and don’t stop until you get the answers.“

Survivorship is not passive recovery. It is active navigation. Debbie Ciak is proof of that.

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Listen to the full episode: Debbie Ciak tells her complete story — including her diagnosis, treatment, the Thanksgiving ER visit, and what she’s learned about advocacy — on Breast Cancer Conversations, the SurvivingBreastCancer.org podcast. Listen below, or wherever you listen to podcasts.

This article is for informational purposes only and does not constitute medical advice. Always consult your oncology team regarding treatment decisions and symptom management.