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?
Comments
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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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Wanted to share that today makes 2 years on Verzenio for me, and I will be stopping it when I finish this prescription. @booboopiglet , so far I am feeling relief, and no anxiety, perhaps because I remain on Anastrazole, among other things for other problems. I also look forward to the end of stomach cramps, urgency, weird hair, and coughing. Okay, even a decrease in coughing would be nice.
I also saw "no evidence of disease", I think for the first time in my doctor's notes. Such an interesting expression, but I'll take it.
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Congratulations on the end of your two year run with Verzenio! I appreciate you sharing your thoughts about entering the next chapter of your journey. I am encouraged by your looking at both big and small milestones as a win! Today is my 50th day off Verzenio and will continue on Letrozole for another eight years. Last weekend, I was able to finally grasp the fact that I am a Survivor. I was also able to begin to hope once again that there is a new chapter of life for me, too. Keep fighting, @shrinkrap59! I am praying for you! 😊
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Hi everyone,
I am terrified of starting Verzenio. I have read posts that you can get throught it, so i am going to keeping reading the positive stories here. I feel like I am on an emotional roller coaster. I am so thankful to have my children, family and friends to support me, but there is strength here in these posts and I am thinking this is exactly what I need to let it out to others that are going through the Cancer Journey.
I am hopeful that the research continues, and we get better treatment modalities so our next generation of loved ones do not have to go through what we did/are.
Adding Stage 3A, Double M, 12weeks taxol, 4 adriamycin txs, 4 weeks radiation. BRACA 2. Had ovaries and fallopian tubes removed last month.
Thanks everyone for listening.
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Honestly - you have made it through many of the worst things that anyone will face; not least 2 major surgeries, chemotherapy and radiotherapy. Verzenio is nothing compared to what you have already achieved.
The first few weeks are supposed to result in the most side effects, in my case it was my digestive system that was mainly affected and I was able to reduce the impact by taking loperamide until everything settled down.
It's a tool to help prevent recurrence, but it's in addition to the treatment you have already gone through. rather than a treatment in its own right.
I hope it all goes well for you
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I was scared about starting Verzenio too. I finished my 2 years of it almost 6 months ago. The biggest side effect I had from it was the big D. It was easily controlled by Imodium. I always had Imodium with me wherever I was, just in case I needed it. If my stomach felt at all off, I took Imodium. It was worse during the first couple months, then got better. (Meaning I’d have 1 issue of D every 7 days or so.) after about 10 months on it, I was experiencing fatigue issues & did a dose reduction. That took care of the fatigue. And according to my dr & research I did, that did not decrease the effectiveness.
My biggest advice is: don’t hesitate to take Imodium any time you feel the need & always have it with you, once I got through the first couple months, it was much easier.
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Hi @tobehere3000,
We understand your hesitancy but we are wondering how you're doing since starting Verzenio? Any side effects we can help you manage? This community is a wealth of go-to tips and suggestions to get you through. You've got this! Let us know how we can help!
—The Mods
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Hello All,
I thought I'd jump on here as I am in the process of choosing between Verzenio and Ibrance. Been at this now since 2009 but have enjoyed a relatively good quality of life. Not looking forward to a whole new set of side effects. Any advice you can give would be greatly appreciated.
Thanks!
Marie
Lost my signature so adding it here. 2009 DX E+P+ her2- lymph nodes
Mastectomy left, chemo, rads, tamoxifen Recon 2010-2013 with implant (gummy then swapped to saline) and breast reduction x2 and tummy tuck
Recurrences/mets: right femur 2013, sternum 2019, sternum 2022, right collar bone 2025, right collar bone 2026, right thoracic and collar lympth nodes 2026
Radiation 2010 left breast, 2013 right hip, 2019 sternum, 2023 sternum SABR, 2026 right thoracic & collar lympth nodes SABR
Cryoablation 2025 right collar bone (no more radiation in mid sternum allowed)
“Cyst” removal April 2026 right collarbone ended up being more breast cancer & July 2026 PET showed 2 lympth nodes in same area
Tamoxifen 2010-2013 (se lost partial hearing left ear) switched to Arimidex 2013. Faslodex since 2020 w/Arimidex and now possibly adding Verzenio or Ibrance
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HI @mkirkwood,
I am glad you joined this stream to share and seek information. I am sorry, though, that you have to enter another aspect of your cancer journey with the choice of targeted drug therapy. I do not know about Ibrance but today marks my 97th day off my two years of therapy with Verzenio. My chemo/radiation treatments ran Jan. -Aug./'24, followed with Verzenio. I will say right up front that without Verzenio, I would not be here today. My Oncologist told us I would only live for another 2 -3 months if I did not enter that treatment. Since there were no other alternatives, we chose life, even with all the possible side effects. The plan started out with six weeks on the 150's twice a day. I also began Letrozole, which I would/will be taking for 10 years instead of the normal five. The side effects of the 150's 2x were severe: appetite changes, bleeding, bruising, brain fog, coughing, depression, DIARRHEA ( 8 - 10 daily), dizziness, fatigue, headaches, heartburn, cold and flu symptoms, hot flashes, insomnia, mood swings, nail changes, nausea (only vomited twice), pain fluctuating everywhere, and sweating. I pushed through the six weeks only because I never became sick enough to have to go to the ER. Some patients have a reprieve of side effects and their intensity after three weeks or so. Mine were consistent. Soooo… when the first six weeks were finished, we all agreed that I would drop down to the 100's 2x daily. Thank goodness! Yes, the side effects remained BUT not the severity, intensity, or 24/7. YAY! The grouping of about 8 - 10 of those side effects, including diarrhea, went rotations - four days on, three days off - for the rest of my two regiment. Somtimes worse, sometimes not so much. Yet that was pretty much my norm. A bonus for my husband and I was that he had just retired four months before my diagnosis, and I was not working. Nor do we have kids or grandchildren. Staying home and remaining in isolation was/is not a problem logistically. Yes, mentally, emotionally, and physically I was a wreck, and or wrecking ball. We thank God that we are best friends and celebrate God giving us the gift and ability to be each other's caregivers. My mom passed away four months after my diagnosis so we did not have family who wanted to be involved physically to help David with caregivering. Yet, we were/are blessed to have a huge network of heart-families and friends who continue to care and support us. So, Marie, that is my Verzenio testimony. I hope I have been able to help you in some small way. You are in my prayers as your journey continues. Take good care of yourself and keep fighting the good fight! (Liz 😊)
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Thanks so much Liz for your reply! I really appreciate how honest you are about the side effects. Congrats on finishing and I wish you NED going forward!
Both my husband and I are retired now so hopefully I can manage whatever comes my way…
Last week I discussed both drugs with my oncologist and he wants me to go on Verzenio. But he wants to wait until after I have a PET scan for a baseline before starting.
So I am hoping to have that in early December and then if all goes well I will move forward with Verzenio. I'm not sure about the urgency but if possible I'd like to get through the holidays and start in January.
All the best to those who might be starting on this road too!
Hugs to all,
Marie
Lost my signature so adding it here. 2009 DX E+P+ her2- lymph nodes
Mastectomy left, chemo, rads, tamoxifen Recon 2010-2013 with implant (gummy then swapped to saline) and breast reduction x2 and tummy tuck
Recurrences/mets: right femur 2013, sternum 2019, sternum 2022, right collar bone 2025, right collar bone 2026, right thoracic and collar lympth nodes 2026
Radiation 2010 left breast, 2013 right hip, 2019 sternum, 2023 sternum SABR, 2026 right thoracic & collar lympth nodes SABR
Cryoablation 2025 right collar bone (no more radiation in mid sternum allowed)
“Cyst” removal April 2026 right collarbone ended up being more breast cancer & July 2026 PET showed 2 lympth nodes in same area
Tamoxifen 2010-2013 (se lost partial hearing left ear) switched to Arimidex 2013. Faslodex since 2020 w/Arimidex and now possibly adding Verzenio or Ibrance
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Hi everyone! I'm reducing my does after taking vernezio for 2 months because of the side effects. does this make my life expectancy lower? Im stage 3
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Hi justforher
I remember reading an article which said that this was reviewed in trials and the article said that the study had not indicated a lower survival rate if the dose was reduced. It went on to say that the initial dosage that was tested in trials was not necessarily the optimum dosage, just that it was the dose that was tested in the trial.
I think the real answer is that no one really knows what the optimum dose is, but that taking Verzenio at any dose does reduce recurrence even after the 2 years have finished.
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Hi #justforher,
I understand you taking a break from the side effects of Verzenio. They can be rough for some of us. My Oncologist started me with the 150's 2x. By the sixth week, many side effects were too severe so he lowered the dosage to the 100's 2x. He wanted me to hang in there for those six weeks in case the severity of the side effects lessened as they do with some patients. I also wondered and worried that by reducing the dosage, was I increasing the risk factor of my cancer returning (Stage 3b). My Oncologist reassured my husband and I what #melanier stated above. One dosage is not more effective than another. Each patient's tolerance is different, allowing for a bit of a change if medically necessary. The purpose of Verzenio remains the same - lessening our chances of the cancer returning within five years. The problem really begins for those who have not been able to tolerate the lowest dosage of 75's. Yet, new trials continue, technology advances, and new alternatives are being found! As with Verzenio for us, it was not FDA approved until 3/2023, the month my breast cancer journey began, which for us, was a miracle! For the remainder of my two years, I stayed on the 100's. The side effects were the same but not as severe. Today marks my 104th day off the Verzenio ttreatment. Speaking for myself, with the complications with my Modified Radical Mastectomy and the six months of chemo and radiation that followed, Verzenio was no worse than what I had been through already. I found it "strange" when my Pharmaceutical Oncologists who dispensed the Verzenio asked me each time my financial grant was ready to be renewed, "What is your main objective for taking this medication?" Ummm… "To live!" And my husband and I have had another two years to be together! Yes, take a break with a lower dosage because you are still fighting the good fight! Do not give up hope! There is always hope! I am looking at my reason for living right now. His name is David and the 24th on this month is our 36th Anniversary! He is 74 1/2, and I am 68 1/2. Our little Yorkie, Bear, is sitting on his lap. Hang on to your hope, #justforher! I am praying for you! 🤓
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