Hi, ive had surgery, chemo and rads and now taking Verzenio and Letrozole. Ive only been taking Verzenio about a month and experiencing abdominal cramps and diarrhoea several times a day. Ive been given loperamide to help with the diarrhoea but it made me feel dizzy so i couldnt drive or do much else.
Told my oncologist about he diarrhoea and was offered a temp reduction in dosage. I was also offered the option of taking a break from it. Im confused by this as i thought the important thing with abemaciclib is that its taken regularly. I didnt understand how a temp reduction in dosage would help if the dosage then goes back up again. Im about to start back at work and my job involves a lot of driving and visiting people so im worried about how ill cope with the cramps and diarrhoea. I can manage it ok if i know i have easy and quick acces to a toilet. I felt i wasnt given enough info by my oncologist to alliw me to make a decision on a dosage reduction or taking a break. Ive read others on BCN saying they have got used to Verzenio after a few months. Id really like to hear from others who are managing on it and if there’s anything i can do to help myself. Oncologist suggested probiotics but what exactly is that? Is it just yoghurt?
I started Verzenios in March at 150mg twice daily and like you I got cramps and diarrhoea sometimes several times per day. I continued for 2 mo hoping that my body will adapt but it didn’t get any better. My WBCs went down too and because of the reductions of neutrophiles (and the risk of infections), my oncologist asked me to stop taking it for a week. A week later, my neutrophiles count were back up and I could continue taking Verzenios but we decreased the dosage to 100mg twice daily. I still have diarrheas but it’s a bit less severe and I still hope it will get better. My oncologist told me that we could increase the dose again in the next months if I can maintain the neutrophiles count and if the diarrhoea gets better. She also said that a lot of people can’t stay on 150mg because of the side effects. It’s not clear to me if the efficacy is the same with 150mg or 100mg ; I read in some studies that decreasing the dose doesn’t affect the efficacy but it’s hard to really know because not everyone decrease the dose at the same time… I will see how my body reacts in the next month and ask to increase the dose again if I can.
@milly156 and @marie911 I started Abemaciclib in June 2023 150mg. Diarrhea kicked in on the 7th day and it worsened to grade 4 diarrhea ie 4 or 5 or 6 times a day. Oncologist reduced dosage to 100 mg. Before starting on reduced dosage was told to take a weeks break. I stated 100 mg in July 2023 and am still on it. The diarrhea is now intermittent. I find that my stomach is very sensitive now eg a drink of cold water will trigger stomach pain and result in diarrhea. Similarly I would get stomach ache from fruits but these are random. I can never predict when or what fruits trigger the diarrhea. I would say overall the diarrhea is manageable with lower dosage. @milly156 you may wish to try a lower dosage. Let us know how it goes. Hugs. .
The unpredictability is the hardest for me. I’m ok with the diarrheas as I mostly WFH but planning some vacation or WE away from home is a struggle. I can’t identify either which food I should or shouldn’t eat and I start to think that it doesn’t matter.
Hi @marie911 and @Siggi . Thanks for responding. I forgot to say that im already on just 100mg and have been on that for about 5 weeks. Like you, its the unpredictability of it thats causing me problems. Ive had 3 days in the last month (but not consecutive days) where ive not had diarrhoea through the day but it has then hit me at night and the following day. Ive also noticed that very cold or very hot drinks or food can trigger the diarrhoea.
I’m thinking about trying rice cakes asctheynused to bung me up pre abemaciclib:)
Am soooooo glad we have each other to share our experiences. Love you all
Hi Milly
I dropped to 50mg and cope reasonable ok. I’m an early riser due to animals to feed so take my Antihistamine 3 am, Verzenios 4 am; Letrozole between 9 - 10am. 2nd Verzenios 4 pm. My bowel usually opens between 5-6am, which if my maths is correct is in a 24 hour window. i find this helps. Supplement wise, i take Acidophilus vegan which helps settle my stomach. I get wind before bowel activity and oddly post belly ache, which i refer to as Void ache. But i manage. I take a full week break when away. Like others i’m very tired and sleep about 9 - 10 hours.
I alos need to have a broad idea when i’m due to go to the loo, working outside makes this important, when conveniences are not convenient.
if you can i’d opt to work part-time mornings for a s many weeks as they allow, ie allow you to adjust. Most employers allow for this slow return. Our ppor oncologists dont know how much information women want, we always want the nitty gritty answers, and thus this forum works well for that, so please don’t beat them up. I find writing to the oncologists helps, with constructive questions, allowing them to answer the specifics you need help with. You are correct i’ve read somewhere that a s long as you are taking the Abemaciclib at what ever dose as long as you continue for the duration the dosage doesnt appear to matter. Personally i think they should start you on 50 mg and work upwards. Good luck and as the forum says keep in touch. I’ve been on just over 12 months. Moonsox xxx
Thanks for this @moonsox. Its great to hear from others who are coping. Since posting ive tried again with loperamide and had a couple of relatively good days. Not so much diarrhoea but a bit of nausea, fatigue and just an achy belly. I dont have antihistamines but have calcium & vit D supplements (Adcal).
Im going to try working in the office a couple of mornings next week. I think I will be able to manage if I can get into a good routine. Im not an early bird so take my Verzenio at 9am and 9pm and take Letrozole also at 9pm.
I didnt mean to sound as though i was bashing my Oncologist. He seems nice and is highly thought of at my local hospital. Im the sort of person who panics first when I dont understand something but then calms down once I’ve had time to think it through and get used to a situation.
I’m scared at the thought of going back to work and thats makin me stress but I think it will be good for me to get into avroutine and will help with my self esteem.
Thanks again for your help and advice x
Hi Milly you are welcome. My only tip for going back to work is being prepared for the following 2 questions: How are you? so sorry to hear you have had breast cancer.
To these i simply say I’m glad i got it sorted - then advise them what to look for. but please bear with me if i have to leave the room suddenly and head for the toilets. I’m on strong tablets which take a long time to adjust to. but thanks for your conerns.
I found most are too afraid to say anything at first, but by introducing them to the importance of self examination, took away the stares and fear. You will have your close frineds who tend to ask more, and by day 2 you may get treated as though you haven’t been away. But its great to be only working mornings/ half days.
Not sure if you believe, but ask support from your angels the night before, visualize surrounding your belly in orange on the day. Remember you are strong you have been through a massive experience and come out the other side. We are always here to support and help each other through. Love and hugs Moonsox.