Are you on Verzenio (abemaciclib)? How are you tolerating it?
At my last visit my breast oncologist threw me a curve ball.
She wants to start me on Verzenio in addition to my AI - Exemestane - which I am currently taking.
It's my 3rd AI, could not tolerate Anastrozole or Letrozole.
Honestly I know nothing about this drug, obviously must educate myself. She told me 3 possible side effects: low white blood and red blood counts (prone to infection and anemia, fatigue) and severe diarrhea and gave me a hand-out to read. I had 1+ lymph node and stage 2-3, BM. She said I would be "approved" for this drug.
For those of us on Verzenio already, how are you tolerating it?
I know everyone responds differently to each medication.
Some thoughts would be greatly appreciated.
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@beekay Hi! May I ask why your onco ramped up the dosage of Verzenio? I'm on 100mg which they started me on and they have no intention of increasing it. In fact, IF I had terrible side effects, they would be happy to decrease it to 50 mg. However, I am fine at 100mg, so I'm sticking with it.
I have the same with WBC and RBC counts, but so far it's fine.
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3 Reactions@brightlight66 Hello! My onco ramped up the dose of Verzenio to help mitigate the side effects. 150mg is the max they want me on but are willing to go back down to 100mg if I don’t tolerate the higher dose very well. Right now I’m thinking I’ll be OK with it.
Wishing you well!
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4 ReactionsI started Verzenio with 50mg (100mg per day), increased to 150mg per day after 6 months, and now at 100mg (200mg per day) after 9 months. I tolerated it well, only a couple of incidents of diarrhea. My oncologist recommend increasing the dosage because the studies used for Verzenio approval were done at 150mg(300mg per day). Although there are publications saying that it is still effective at lower dosages.
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2 Reactions@jesusis
Jesussis
Hello. I started Verzenio in Sept 2025. 150 mg twice a day. It was very harsh on my system. Diarrhea and vomiting. I've since been reduce to 50 my twice a day. I pray the lower dose does its job. I'm scheduled for. Pet Scan this week. I also have CKD so I'm dealing with two beast. Verzenio affects both diagnosis. Looking for other options. Currently targeting therapy. I'm inquiring about Immuno Therapy. Love to hear responses.
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1 Reaction@brightlight66 I take anastrozole for two years now, and am also on PARP-inhibitor Lynparza. THey started me on 150mg Verzenio twice per day on top of that, and I could not tolerate it with these other medications. I had diarrhea, but was actually getting confounding constipation, that was even worse. We tried 150 once per day and it made it worse. because it is an instant release, you actually need to take it twice per day for your gut to adjust to it.
So we scaled back to 50mg twice per day and I am tolerating that okay with my other meds.
I do still get diarrhea spells, but they're not very frequent, maybe once or twice er week. But again, I am taking other medications that cause this too, and I have no gallbladder, lol there's a lot wrong with me, haha. I've been taking this regimen for 9 months now, and am only now starting to see a dip in my RBC, but that is likely being caused by the lynparza.
The genetics counselor described it like this, this can* give you an added 10-15% chance less of reoccurrence. So for me, it's damn worth it. I plan to scale the dose back up once i stop lynparza.
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3 ReactionsHello,
I took Verzenio for the full 2 years at full dose (2x150 mg daily). There was loose stool and diarrhea at first but it goes away after a couple of weeks (they can give you an anti-diarretic). This was followed by extreme constipation and hard stool (I now take magnesium citrate supplements which might have been able to fix this - apparently everyone is deficient in magnesium because it is not on our soil deficient food). My blood count was also deficient the entire time - if your neutrophils go below 1 they pause the drug, if it happens again it’s a dose reduction. Taking dark chocolate 1 hour before blood work will bump the neutrophils up a bit. I was committed to staying on the drug because it increases survival by 23 percent or an absolute value of 7 percent
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2 ReactionsI'm 59 years old - had stage 1b ER+/HER2- breast cancer but found after surgery to have two lymph nodes with cancer and a much larger tumor (7cm) so considered high risk. I've been on Verzenio and Anastrozole for the past 18 months. For both I had some false starts. I first started Anastrozole which gave me hives on my legs. It was weird. I stopped for a couple of weeks and restarted and no hives. With Verzenio, my liver enzymes shot up. Again, I stopped for a month, restarted, and no liver problems. I still have probably 4-5 placed on my regular blood tests that are "abnormal" each time (eg. low red blood cell; large blood cells) but these are normal, abnormal things that my oncologist isn't worried about, doesn't really affect how I feel, and will go away when I'm off the drug. But - diarrhea - ugh. I still have diarrhea a year and a half in. But over time, Imodium has become my best friend and I've learned how to predict when the diarrhea will come . . . mostly. It's a juggle between diarrhea and constipation from Imodium. I haven't had to change my life too much due to diarrhea - just pay attention more (eg. know where the public bathrooms are going to be when I go out). It was helpful to tell a handful of close co-workers with whom I have regular meetings about this side effect as I've had to duck out of zoom meetings a couple of times. They are very understanding. When I had a trip scheduled to fly to California for my daughter's graduation, my oncologist let me stop taking the Verzenio for 5 days which was great (happy gut!) When considering whether to take it, I asked myself if I could handle 24 months of this strong drug with side effects in order to have the extra protection against recurrence and I said yes. For me, I figured I could do anything with a stop date of 24 months. Sooooooooo - six more months and I'm done!
I trust my oncologist but also ask her in depth questions and have her provide the data on treatments (which she's happy to do). I want to be an informed consumer of healthcare, but also know that my oncologist is the expert who not only went to med school for this and had a fellowship at Fred Hutch Cancer Center, she's seen patients with cancer every-single-day for decades. I go in for labs and to see her every 6 weeks (which I think we be more spread out after I've done my 2 years on Verzenio). So if anything weird is happening with my health, she knows it.
I'd say if your oncologist is suggesting it, you can give it a try and see what side effects pop up. You can always stop, take a break or pause & restart like I did.
Also - here's a short, not super scientific video that helped me understand how the drug works: https://www.youtube.com/watch
Thank you! Good video to watch.
@maryk206 Thank you for your thoughts, the video and sharing your experience on Verzenio.
It was very helpful. I am very scared of this drug but more scared of reoccurrence.
Especially since I have been under chronic stress for the past 4 years and even more since my BM last year - over a specific family matter with my adult son which, at this point, is unsolvable.
I know for a fact, chronic stress = inflammation and inflammation = diseases, cancer and heart disease are just two. I have both.
It's crunch time for me, will have a telemedicine visit on Monday.
Not even sure of the questions I should be asking. I am overwhelmed.
The very best of wishes to you on your road of recovery and health!
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