Still having side effects after stopping Abemaciclib / Verzenoid

Hello Thetis 

I am one of the Community Champions on this forum and noticed you hadn’t had a response from the community yet. Welcome to this forum, and I am sorry your drug break hasn’t brought the relief you hoped. I have a different sort of breast cancer and don’t have experience of this drug, so can’t give a response from direct experience. However my experience of other cancer treatments is that recovery isn’t instant, even if the drug is technically out of your system. If you are continuing to have gastro issues, it would be worth contacting your oncology team. 

Hi Thetis

I had a similar issue. The 150mg Abemaciclib made me sick and I had loads of gastro issues. I came off it after a few days but still felt grim a couple of weeks later. After a lot of investigation it turned out I actually had an appendix infection. I got antibiotics for that, which worked a treat. Once I was better, I went back on Abemaciclib at the 50mg dose, which was surprisingly okay. I could get back to work and my usual activities pretty much as normal. 

Maybe it's worth checking with your healthcare team if something else could be causing your fatigue and gastro issues?

Hi Shab

Thanks for sharing your experience with me, it's really helpful. Thankfully I'm seeing my oncologist soon, I've already suggested going onto 50mg like you did but they are resisting that, suggesting 100mg first. So we'll see. 

I will definitely take your advice and look further into what else could be contributing to fatigue and gastro issues. 

I hope you are doing well. xx

Hi Coddfish, 

Thank you for your message. It's good to hear that in your experience recovery doesn't necessarily match the time it takes for the drug to get out of your system. I'm seeing my oncologist soon so fingers crossed there will be a solution. 

I do appreciate your support and I hope you are doing well. 

Sxx

• I completed 2 years on abemaciclib, finishing on May 3 rd this year. For the first 2-3 weeks the benefit was pretty much psychological, but I definitely feel less tired now and the watery eyes, blocked nose and sinus problems have moved on. I expect that I’ll continue to improve  with time, but I’m  not surprised that the symptons may well take a while to move “through and out”. 
• All the best to you. xx

p

Sorry about the bullet points last night- I was tired, mainly due to heat!

Overall my ongoing abema symptoms hadn’t been too bad after the first 6-8 weeks with the diarrhoea and gut pain. But I was a bit ground down with infections though blood tests were still not too bad. 
Anyway less tiredness is welcome and not having the watery eyes . Improvement in nails, hair and skin will take longer and rigid cramps occasionally in fingers and toes.

I was on letrozole for some 14 weeks before the abema so I’m hoping to eventually get back to how that was as it wasn’t bad at all really. Now that I’m only on the letrozole I’ll start to take note of what brand I get and try to get a particular one if there is any difference to be made.

A break for you before continuing will definitely boost your blood results and I hope you do get the uplift in energy which I did notice first.

xx

Hi Cycnoptimistic 

Thanks for both your messages, the bullet points were fine!

Congratulations on completing two years of abema, that's not easy and it sounds like you had a lot of side effects to deal with. 

Thank you for sharing your experience and your advice, it's so helpful. I guess I've been a bit freaked out because I've only taken abema for two weeks and already the fatigue was stopping me doing things. I thought this would improve quickly during the break. Anyway I'm back to oncology tomorrow, blood tests and starting again so maybe I need to be prepared to stick with things for longer like you did with the initial 6-8 weeks. 

I really hope you are doing well and again, congrats for getting this stage completed. 

sxx

Hi Thetis,

All the best with it, I definitely was given to saying “there’s no way I’ll manage 2 years on this” but after those first couple of months it did settle a fair bit and I was able to put my diet back to normal with more veg and roughage.
It was “acceptable “ for most of the time in terms of side effects and tiredness as I was very committed to taking it, but then definitely very keen to get to the end of the last few months..

xx