Finishing verzenio
I have just finished two years of abemaciclib, following on from surgery, chemo and radiotherapy. I was lucky that just as I finished radiotherapy, Verzinio was approved in the UK for stage 3 BC patients with high risk of recurrence. Given the pretty awful side effects as well as the timing, it means that there aren't many people in my position, who have finished 2 years' treatment.
I am still on letrazole, zoladex and zometa, but this sees the end of a pretty arduous chapter. I've been anaemic since I started chemotherapy 2.5 years ago and my white cell count is on the floor. I've also had the fatigue, thinning/disappearing hair, gastrointestinal issues and more recently, massive inflammation leading to a rheumatoid arthritis diagnosis and lots of steroids.
I am hoping I will start to feel better - I don't remember what it's like to have energy and enough breath to go up a set of stairs 🤣🤣. Is there anyone else who has been in a similar situation?
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I was on abemaciclib for 4 years due to metastatic disease however required 2 dosage reductions to be able to tolerate it. Was that an option for you? My anemia and low neutrophils became less of a problem when I had to stop because of progression (new tumors in my liver). So, I think your blood counts should start increasing and you will feel better!
Hopefully you have a rheumatologist treating your arthritis. Steroids can be life savers but must be used with caution. My initial round of high dose prednisone for hepatic inflammation led to premature cataract development for which I had surgery a year ago. 2nd blast last winter was therapy for pneumonitis. A hip rapidly deteriorated & was replaced in May.
For others reading this, I managed bowel urgency by taking 2 calcium polycarbophil tablets daily with lunch. Brand name is FiberCon. Ironically, it’s usually stocked in the laxative section. As a retired pharmacist, I knew it could help either diarhhea or constipation by a unique mechanism of action - absorbing excess fluid in the lower intestine to bulk up stool…
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Wow - 4 years is amazing - it sounds like you have had a tough time. How is the Enhertu going?
I'm not surprised you needed dose reductions though. I think it could have been an option, but I managed without it in the end. I had to pause it twice for a week each time, once when I caught Covid and once when my white cell count became non existent. Its still only at 1 now.
I do have a rheumatologist, but he wanted to wait to treat the RA until I had finished Verzinio, hence the steroids which I hate more than any other drug I have been on. Without them though I can't move very well and fall over a couple of times a week because I can't react fast enough.
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Hello to all you beautiful and strong souls.
My oncologist wants to put me on Verzenio, but the more I read about it, the more I'm resisting. Reading your comments I'm wondering, are all your ailments (RA, bowel urgency, etc.) side effects of the drug?
Thanks in advance for your kind replies.
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Hi faithfulkat
Not sure where you might be in your journey, but I was diagnosed in January 2022 with stage 3 bilateral breast cancer. One tumour was 12.5 cm, the other 2.5cm.
Because of the size of the main tumour and the fact that I had it both sides, I was at high risk of recurrence. Abemaciclib was approved for use in August 2022 in the UK, and so I was one of the first non metastatic patients to start on it.
The first couple of months were a bit difficult because of the stomach issues, but they settled down and I probably only had one or two instances of diarrhoea a week. Taking loperamide as soon as it happened made a massive difference and I managed the two years without too much difficulty. I have my own business and worked full time all the way through. Others I know of weren’t so lucky and had to stop.
I also had mild anaemia and my white cell count was very low at times, but in my mind, I have given myself the very best chance of reducing recurrence - studies suggest by over a third.
I am incredibly anxious about the cancer coming back - apparently unhealthily so, although I’m not sure how that works, but taking it made me feel better about the future.
You could try it and see whether you can tolerate it. If you can’t you can always come off it. Good luck whatever you decide.0 -
Thank you @melanier , wishing you the best in the rest of your journey towards good health ❤️
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I'm just coming up on two years of Verzenio (abemaciclib) and should find out soon if I'll be stopping it or continuing. I'm also on anastrozole (Arimidex), an AI, which most likely I'll be taking for a total of five to 10 years. I also get bi-annual infusions of Zometa (zoledronic acid). All this is for a post mastectomy, chemotherapy, and radiation IDC stage 3 with 4 involved lymph nodes. In terms of Verzenio, I used to have horrible abdominal cramps lasting one to two hours before finally experiencing diarrhea. Now after a regular bm in the morning I take .5 mg of Immodium (loperamide) preventively and that seems to keep the cramps and diarrhea in check. Because I'm at a high risk of recurrence (had two mastectomies, one for the IDC, and one for an earlier DCIS), the recurrence would most likely be in a bone or other distant site. So I've been motivated to stick with the Verzenio at 100 mg twice daily. My bloodwork has also shown abnormal values here and there, but not enough for my oncologist to stop the med or reduce it further. I guess I've been lucky not to have experienced (so far) any other significant side effects.
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Hi @marha207! Welcome, and thank you so much for sharing your story! Your ability to manage side effects and stay focused on your treatment plan is inspiring. We’re so glad you’re here, and hope this community continues to support you as you move forward.
Sincerely,
The Mods
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Hi I don't think many have managed to do the whole 2 years, so it's quite achievement. I wanted to keep taking it tbh just because I was terrified of recurrence, but now I've been off it for six months, I am really glad it's finished.
I had anaemia and my hair was quite thin and I was pretty fatigued all the time. I do feel a bit more like me now, but I'm glad I had the opportunity to take it. I had my last bisphosphonate infusion last week, so now I just have letrozole for another 7 years and zoladex for 2. Hope you manage the rest of the treatment xx2 -
Hi,
I’ve just joined and am reading lots of comments about Verzenio. I’m hoping someone may have experienced the same issue I am currently trying to work through with my oncologist.
I had partial mastectomy and axillary clearance (3/11) in May 2024, followed by chemo and radiotherapy along with Letrozole, vitamin D and calcium. As I was finishing chemo my oncologist suggested Verzenio which I’ve now been on for 12 months, starting at 150mg and being reduced to 100mg.
I requested my Estrogen levels be checked to make sure everything was going in the right direction. Sadly not - they were at 550 instead of 0. This led to a monthly Zolodex injection which has had a very minor impact to date. A CT scan showed no physical reason why estrogen levels weren’t dropping.
I’m hoping someone here may have experienced similar and have answers or suggestions for getting me levels down. Had gallbladder removed in 2021 and diagnosed with Type 2 diabetes in June 2022. Not sure if either has an impact.
Any suggestions would be appreciated.
Thanks for reading.
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welcome @aussie.jan,
We’re so glad you’ve found us. 💕 You’re not alone—this is a caring space full of people who truly understand your experience and are here to support you.
You’re definitely not alone in dealing with confusing estrogen levels while on Verzenio + Letrozole. A few members here have had similar issues where their estrogen didn’t drop as expected, even with ovarian suppression.Sometimes this happens because ovarian suppression takes time, the dosing needs adjusting, or the type of estrogen test isn’t the “ultrasensitive” version. Others have had to switch suppression meds before things finally stabilized.
It’s great that you’re checking and advocating for yourself. You might ask your oncologist about the test type, how long suppression should take to work, and whether a different medication or schedule might help.
So you know, we also offer Zoom support groups to help support you. If connecting in real time sounds helpful, we hope you’ll consider joining us.
Please keep us posted — you’re not alone in figuring this out.
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Hello, happy to find this thread. I am 18 months into my 2 years on Verzenio. (Was reduced from 150 to 100 after the first 2 months because it made me anemic, and have stuck with 100 ever since. I’m 65.) Thought I was doing pretty well — diarrhea pretty much cleared up after the first couple of months, blood counts not bad, hair is thin, nails are weak, but nothing too drastic. But in the last couple of months I’ve felt more tired, super achy (I also take Letrozole), had an arthritis flare up in my hand, and am now dealing with a compression fracture in my spine (an incidental finding on a scan) so endocrinologist wants to put me on Evenity shots for a year.
Anyone else dealing with this kind of build-up of side effects over time?
And I’m interested in your estrogen experience, @aussie.jan. No one has ever suggested checking my estrogen levels; wondering if I should ask for that? I was 17 years post chemo-pause when I had a recurrence last year. (Did tamoxifen for 5 years then; started Letrozole last year.) I assume you are post-menopause, too, if you are on letrozole?
Thanks for any wisdom this wonderful community can offer.
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My breast cancer journey began 3/'23. I will be finishing my two years of Verzenio in one week. I am not sure how to wrap my head around entering the real world after being in isolation for almost three years. I am not even really sure what to say in this forum. I am 68 1/2 years old and my husband of 35 1/2 years has been by my side every step on the way. Yet, I feel rather lonely and displaced. Is it normal to feel this way?
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I posted a question on 7/24 about the end of my Verzenio targeted drug therapy arriving soon and were my anxiety attacks normal. I see that no one else was feeling or dealing with the issues I addressed in a manner to post any comments. Yet, I do want to thank breastcancer.org for providing videos about the anxiety about facing life in between the end of all my treatments. Next week, I learn the results of all my six month testing. Scary stuff. Even though there was no one available on this chat format to share with, I hope there is help for others in on other topics. Take care all. 🙂
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Hi @booboopiglet, and welcome!
We’re really sorry that your earlier post didn’t receive any replies. Please don’t take the lack of responses as a sign that what you were feeling wasn’t valid or important. The end of treatment, especially coming off a medication like Verzenio, can bring up a lot of anxiety, uncertainty, and fear about what comes next, and many members describe that "now what?" period as surprisingly difficult
We’re glad the videos on BC.org were helpful, and we’re especially thinking of you as you wait for your six-month test results next week. Waiting for scans and results is really stressful, and you don’t have to go through that fear alone. If you haven't already, check out this article from our main site: Scanxiety and Breast Cancer
Thank you for coming back to update us, and please keep posting. We're here for you!
The Mods
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I'm sorry that no one replied to you - I think sometimes the notifications don't reach everyone. I am 2.5 years post Verzenio and I know what you mean when you talk about anxiety. I asked my oncologist if I could carry on taking it and he just said no. Stopping it made me feel unprotected - I loved being on it because I felt it would be stopping any recurrence.
I saw some research which said that the effects of taking Verzenio for 2 years, lasted for a long time after the drug was stopped but it didn't really make me feel better.
All I can say is that I am now 5 months off the 5 years from diagnosis and I will always be grateful for the opportunity that I had to take Verzenio. In the meantime, I found things that made me feel better in control of my health. I stopped eating meat, cut sugar right back, did exercise and tried to lose weight. I take various supplements, did a load of reading and generally tried to give my body the best chance. That's not to say I succeeded, but the trying made me feel better!.
Good luck with your six month tests
Melanie
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Hi @melanier
Thank you so much for responding and sharing your story. I understand about not receiving responses. The way I wrote that came out harsher than I meant. Wow, 2.5 years post Verzenio! You are the first that I have read about being that far along. So close to remission (if that word is still used), too!
Literally everything you wrote resonated with my heart, mind, and soul. I know I am not the only one going through this. Yet, actually hearing from someone who has really lifted my spirit! You are a Godsend! This week has been an emotional roller coaster that I was not expecting and by midweek, I was a wreck. Bless my poor husband's heart! David has sat in the same cart with me on all these rides and never once stepped out! 💞🎢
I know/have known so many people of all ages with all types of cancer. But I have yet to meet someone else who is/has been on Verzenio. I have been told by some that those of us who have been are "Rare Breeds." Not something I have signed up for but maybe I will be a voice who can reach out to the future breast cancers patients that will enter the Verzenio journey just as you have been for me.
God bless you, Melanie, for your understanding, care, and compassion. Also, for you well wishes pertaining to my test results. I wish you the best, too!
Liz 😊
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