Forum Discussion
Abemaciclib Verezenio side effects
Hi Ladies,
I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects. I am in the fortunate position in that both these drugs are being given as a preventative measure. I don’t have Mets, but am at very high risk of re-occurrence.
I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects. I am in the fortunate position in that both these drugs are being given as a preventative measure. I don’t have Mets, but am at very high risk of re-occurrence.
Originally diagnosed with bi-lateral early breast cancer back in March 2023. Had a small 1cm triple negative tumour, and a larger (5cm), more aggressive (grade 3) oestrogen positive tumour with lymph node involvement. After initial breast reduction to remove both tumours and additional auxiliary clearance, I had 6 months of chemo, plus radiotherapy to both breasts. I managed to keep fairly positive throughout these treatments, and while at time a struggle did manage to work albeit at reduced pace throughout.
Just as I finished radiotherapy my oncologist recommended abemaciclibb as part of a trial that is showing reduction in recurrence rates of around 6%. I’ve only been on these for 5 weeks, and while the side effects are manageable, they are not a lot of fun - diarrhoea, fatigue, vertigo, and just generally feeling unwell. Hot flushes and insomnia with the hormone therapy which again are manageable and on their own no big deal, but the combination has me exhausted. I was soooooo looking forward to end of my active treatment and getting some energy back, getting back to working full time aswell, but now with two years ahead of me on this regime, I am wondering if it is worth it.
Oncologists reluctant to reduce dosage and are keen for me to stay on the Abemaciclib, but I’d love to hear from anyone else is in a similar position and how you are managing the pros and cons of the treatment options versus quality of life, and from anyone who’s been on Abemaciclib for a while to know if side effects improve over time.
Thanks
Jenni
Oncologists reluctant to reduce dosage and are keen for me to stay on the Abemaciclib, but I’d love to hear from anyone else is in a similar position and how you are managing the pros and cons of the treatment options versus quality of life, and from anyone who’s been on Abemaciclib for a while to know if side effects improve over time.
Thanks
Jenni
29 Replies
I started abemaciclib in November 2024 at a dose of 150 mg once per day. I paused treatment for three months until my liver recovered. I am now back on 50 mg twice per day. My oncologist told me that letrozole, which I have been taking since August 2024, is the main medication for my treatment.
50mg two times per day shows efficacy in the research/trials so if you can tolerate it this is fantastic!
I'm almost 15 months taking abemaciclib. I'm on 100mg x 2 daily and it's manageable, having reduced from 150mg x 2 which was unmanageable, my body was having none of it.
My bloods have been good the whole time, my stomach is another story. Milk is a definite no, small amounts of dairy are ok, and from time to time it rebels for no apparent reason. I've reached a point where I know the signs and I'm balancing things with gastro stop, taking 1 every few days seems to help a lot and keep me out of trouble, and life is fairly normal.
My oncologist has been great and told me I can take a few days break if it gets bad, which I've had to do occasionally. He is keen to keep me on it for the 2 years, even if it means reducing the dose again, and taking short breaks, but it seems to have settled down a bit more recently. He also said that can happen as well.
My hair is ok, it shed quite a bit a while back, but has also settled down, so I'm not sure if that was just it settling back into a shedding pattern. I feel like it's slightly thiner at the temples, but my hairdresser says it's normal for menopausal women to thin slightly at the temples, and to be honest it's only me that notices it when I pull my fringe back.
As you say, we're still here, and abemaciclib has had good results so far, so I'm happy to stick with it.
Hellooo!!
thank you! Spoke to ONC last night and he agreed that my dose needed to drop. My platelets have dropped again so he was going to reduce the dose in any case.
Will do another round of bloods in a month to see how the platelets are responding to the lower dose. There is no way I could have done another year on that higher dose. My ONC told me that almost no one can withstand the full dose and almost everyone has a reduction. I have a friend who is doing the full dose but the amount of horror stories she has told me about not getting to a toilet in time is pretty awful.
I will just need to be patient with my hair. It could always be worse!!My oncologist told me that research shows a reduction of dose does not seem to affect the outcomes, and it was more beneficial to keep me on the medication at a lower dose than to stop it all together. If I can tolerate it that way, it's still beneficial, rather than have to give up because the higher dose is not suitable for me. 150x2 per day was absolutely not achievable long term for me, I had to stop after 5 weeks, it was awful. I had a 4 week break and started again.
As this is an added preventative treatment for me they said they want me to have a good quality of life as well.
The trial research is showing that people who were offered a reduction of dose early on were much more likely to finish the 2 years. People who were not offered a reduction were more likely to stop treatment, which I would have done as my body just couldn't tolerate it.
An update (can't believe it's been 10 months!).
I seemed to tolerate the abemaciclib ok at 100mg a day and then 150mg a day and then 200mg a day. Issues arose when I went up to 250mg a day. Diarrhea was AWFUL - kept me awake at night. Was maxing out the gastro stop and had them stashed everywhere (work, car, handbag etc). Couldn't go to gym 'safely' - never knew when it was going to hit. About 6 weeks after my dose increased to 250mg my hair started falling out and by December (3-4 months later) it was falling out like it did during chemo.
My platelets also dropped significantly month on month, so on 01 Jan I reduced my dose to 100mg x 2 times a day - so far so good with no Gastro Stop needed. Had a blood test a few days ago and am currently waiting for a call from the Onc - he said in December it was likely that we would have to reduce my dose.
I don't think I've ever been so miserable - obviously my body was a bit like ''uuuum, no thank you'' Now I need to wait (again) for my hair to grow back. It's only been 14 months since I finished chemo. 2 steps forward, 1 step back - but hey, I'm still here!Hi Jenni and everyone else interested in the Abemaciclib thread. I have mets in the spine and have been taking Abemaciclib and Letrozole since January with ongoing diarrhoea which has worsened lately. I am on 150mg and hoping to have either a reduction of break when I next visit my oncologist in two weeks time. I'm very interested to hear of others experiences and wonder if anyone else would like to contribute to and renew this discussion. Thanks in advance.
Hi Shirley0411
I have been on Letrozole since August 2024 and Abemaciclib (150 mg) since November 2024. I thought I was managing the side effects well, but after having to stop Abemaciclib due to elevated liver enzymes, I’ve noticed a significant improvement. I have more energy and feel much better. It has been almost two months since I went on a break from Abemaciclib. I have another blood test coming up and will be seeing my oncologist in two weeks.
Hi Shirley0411
I've been taking abemaciclib and letrozole since the end of August last year as part of my preventative treatment.
The initial dose of 150mg 2 times a day did not agree with me at all, the diarrhoea was pretty bad and never settled down, just kept getting worse, which then caused fatigue and I felt pretty awful. After persevering for 5 weeks my oncologist paused the treatment for 4 weeks, and then started me on a lower dose of 100mg twice a day.
The lower dose made a big difference, I get occasional diarrhoea, which seems to happen every few weeks. I also noticed that I can't tolerate much dairy since I've been taking abemaciclib, particularly milk, and I've switched to lactose free milk. I've also reduced my coffee intake to occasional. I originally thought coffee was causing me issues, but after lots of experimenting it turned out to be the milk that caused my stomach to rebel.
I also get hot flushes and general muscle aches, mainly in my legs, but I'm blaming the letrozole for that. Exercise and stretching helps a lot with the muscle aches.
I'm finding the abemaciclib manageable, but I definitely couldn't have taken it at the higher dose for any length of time.
Hi Katie,
Thank you for your reply. Your side effects are similar to mine.
My oncologist has reduced my dose to 100mg and I think I am already feeling the benefit of that. Here's hoping life will take on a brighter outlook each day with the change.
It was difficult for me to determine whether it was the abemaciclib or the letrozole causing the majority of the problems for me.
All the best to you Katie.
- Hi @deekay77, my hair has grown back as thick as it used to be, and I haven't noticed any thinning. However my eyelashes are very short at the moment and my body hair is much finer. I only shave my legs every week or so now and my underarm hair is almost non existent, bikini line is much lighter as well. I assume this is caused by the hormone suppression more than abemaciclib.
- Hi again - have any of you experienced hair loss/thinning with the combination of letrazole and Verzenio? I just saw my prescription and it looks like the doc is starting me on 100mg, but only once per day?
- My experience with Abemaciclib is similar to @Katie. Started at 150 and was tolerating for a few weeks then had extreme diahorrea and unknown to me was anemic (not related to iron but the medication) I thought I was just unfit after the year of treatment. Ended up with a blood transfusion and bags of potassium. Oncologist dose reduced to 100 mg which has helped. I do find if I start new medication, recently on Veoza for menopause symptoms, I had half a day of an upset stomach. This has settled now. I recently had ovaries and fallopian tubes removed with immediate paws symptoms, while it has been a week on Veoza, no more zoladex. I am also on letrozole.
- Thank you @Katie46 - I haven’t been given any information about what my options are if it’s intolerable. I don’t even know what dosage I will start on, but the 150 twice a day seems to be standard starting point. I just want to be able to go to gym and be relatively normal, so fingers crossed!
- Hi @deekay77, my body didn't tolerate the 150mg x 2 daily, and it never settled down, just seemed to be getting worse. My oncologist said it does settle down for most people. I was given a break of 4 weeks and started again at 100mg x 2 daily, and it has been fine. The side effects I had at the higher dose almost completely disappeared, I very occasionally get stomach issues, much milder than before, and decreasing over time. 1 gastrostop fixes it. No other side effects so far. I've been on the lower dose for 4 months.
- Hi everyone - thanks for all of this information. I have had a recurrence (grade 2 - no lymph involvement), 4 rounds of chemo and 25 rounds of radiation. I am currently on letrazole (although we are keeping an eye on my ovary function to make sure it doesn’t recover post-chemo) and I will soon start Verzenio. I am really nervous about it. I am tolerating the letrazole well so far (week 2), but I did find out that I have osteoporosis in my lumbar spine and osteopenia in my femoral neck. Sigh. I’m 47. Anyway - I’ll try the Verzenio and see how I go. I’m really grateful for all of the above -information - it means I will be more alert to side effects, because I assumed that the abdominal issues/diarrhoea would present quickly and then subside…from all of the above, it seems I am in for a potentially bumpy few months.Thanks again!
