This is my personal experience with Verzenio. Everyone’s experience is different; always work with your medical team on treatment decisions.
40 Days Left
As I write this, I have exactly 40 days left of Verzenio treatment. Verzenio has been a tough drug for me.
Some days it gets me really down. But most days I’m able to remind myself that not everyone has these options available to them — and I’m so grateful that while my cancer carries a high risk of recurrence, I have these tools to help me stay cancer free.
If Verzenio is part of your treatment plan and you want an honest look at what taking this drug is really like — read on. If you’d rather just feel it out for yourself, total respect. Just stop reading here.
Why I Was Put on Verzenio
I was diagnosed with hormone positive breast cancer at stage 2 at age 34 — just weeks after my son’s first birthday. I went through aggressive standard treatment: ACT chemo, 28 rounds of radiation, and a mastectomy. I am now cancer free.
If you want to read about my entire treatment story, you can read my BLOG about it.
But my breast cancer had several factors that put me at high risk for recurrence as distant metastasis:
- Grade 3 tumor
- Multicentric (multiple tumors in the same breast)
- Spread to multiple lymph nodes
- Postpartum breast cancer diagnosed within the first two years of giving birth
- Diagnosed at a young age (34)
Because of this, my recurrence prevention plan includes
- 10 years of Tamoxifen
- 2 years of Verzenio
Tamoxifen has been difficult but manageable. The hot flashes, night sweats, joint pain, and fatigue have been hard — but I’ve adjusted to my new normal.
Verzenio, on the other hand, has been a different story entirely.
Common Verzenio Side Effects: My Experience
Here’s an honest breakdown of the most common Verzenio side effects and how they’ve affected me personally.
Fatigue
This has been one of the hardest side effects for me. The fatigue hits like a bus sometimes. Managing it means pacing myself carefully — napping daily when my toddler naps, getting at least 10 hours of sleep per night, and accepting that if I push myself one day, my body will need several days to recover. I’ve learned to plan for this when I can. And sometimes I just have to get through the day.
Diarrhea
I struggled with this when I started on the standard dosage. At my current reduced dose of 50mg, it’s no longer an issue for me.
Abdominal Pain
The abdominal pain was intense during the first few months. I still occasionally wake up at night with discomfort, but it has settled significantly over time.
Nausea
My stomach has mostly adjusted, though I still have occasional bouts of nausea. I’ve become very mindful of what I eat and tend to stick to my safe foods.
Hair Thinning
My hair thinned significantly — falling out in chunks during the first few weeks. It was honestly very triggering. It brought me right back to the day my hair began falling out during chemo. The thinning has slowed, but I still experience a good bit of shedding every time I shower or blow dry my hair.
Low White Blood Cell Count
My WBC count has never dipped dangerously low, but it stays low — similar to where it was during chemo. Combined with having a toddler, this means I get sick frequently. What is a minor cold for the rest of my family often turns into a four week illness followed by a secondary bacterial infection for me.
Liver Enzyme Elevation
I’m grateful I haven’t experienced this. My doctors run bloodwork every three months to monitor these levels — something worth knowing if you’re just starting Verzenio.
The Verzenio Side Effect No One Warned Me About: The Rash
The most difficult symptom I’ve experienced on Verzenio isn’t even on most people’s radar — because I’m allergic to it. I believe this is fairly rare, which is exactly why I’m sharing my story.
Because when it happened to me, no one could tell me what was wrong. And I spent almost a year and a half searching for answers.
Within the first 10 days of starting Verzenio, a severely itchy, blistering rash appeared on my arms and legs and quickly spread across my entire body. I stopped the drug and started aggressive antihistamines and oral steroids. The rash continued to spread, blister, and peel for weeks.
The timing pointed clearly to Verzenio — but doctor after doctor responded with “I’m just not sure”, because they hadn’t seen this from Verzenio before.
I was told this rash was:
- Bug bites (yes, seriously)
- Poison ivy
- Eczema
- “Are you sure you didn’t get into poison ivy?”
- Stevens Johnson Syndrome (thankfully, it wasn’t).
It wasn’t until a new dermatologist biopsied the rash that we finally confirmed — it was Verzenio.
The rash isn’t constant, but it flares with any inflammation in my body: illness, stress, heat, even a beer. And the longer I’ve been on the drug, the more easily it flares and the more intense it becomes.
By the time we identified the cause, switching from Verzenio to Kisqali (which has since been approved as an alternative CDK4 inhibitor) didn’t make sense — Kisqali is a three year protocol, which would have added a full year to my treatment plan. I’m now on the lowest possible dose of Verzenio and managing day to day. The Alabama heat makes March through October particularly challenging.
If You’re Struggling with Verzenio Side Effects — Here’s What Helped Me
Ask about a dose reduction– Early studies suggest reduced dosage may be equally effective. It made a significant difference for me.
Track your food triggers- Everyone tolerates things differently. Keeping a simple log of what settles well and what doesn’t can help you find your safe foods faster.
Pace yourself– The fatigue caused by Verzenio is real. If you know you’re going to push your limits one day, build in recovery days around it.
Don’t skip exercise — but be smart about it- It sounds counterintuitive, but movement can actually help improve cancer related fatigue. The key is not pushing beyond what your body can handle and building up slowly. Some days exercise looks like a walk around the block rather than a full workout. Honor where your body is on any given day.
You can check out my RESTORE or REBUILD exercise programs to help you learn how to exercise appropriately after the completion of active treatment.
Ask about medications to manage side effects- Doctors often have helpful recommendations to make Verzenio more tolerable — don’t suffer in silence before asking.
Consider other options if needed- If you’ve tried everything and Verzenio is simply too much, talk to your oncologist about alternatives like Kisqali.
Final Thoughts
The maintenance phase of breast cancer treatment is its own kind of hard. It doesn’t get talked about enough — and it should.
Some days Verzenio gets me really down. But most days I come back to this: not everyone has these options. And I’m grateful that while my cancer carries a high risk of recurrence, I have tools to fight back. 40 days left. I’ve got this. 🦡
