Abemaciclib

Hi Hebra84,

l have been taking Abemaciclib since October. It is offered to those of us that are at a higher risk of recurrence. The Monarch E trial suggests that it reduces recurrence by a third. When I was offered this drug I confess I felt angry as like you after surgeries, chemo and radiotherapy I felt I had been through enough.

We are all different so I can only give my experience. I am living my life almost as pre breast cancer. Yesterday I managed a 26 mile cycle ride, although I was tired afterwards. My energy levels on this drug are not as they were and I do get more fatigued but not drastically. I found diarrhoea to be  worse during the first month of taking the drug. You will be given loperamide (Imodium) which has controlled the side effect of diarrhoea. My skin and hair are dryer but a good moisturiser and conditioner sort that our. My eyes water when I’m out on a walk or a cycle ride which is annoying but wrap around sun glasses really improves this.Some times I feel light headed but I find exercise helps this, although it is often the last thing I want to do. I have general aches in muscles but I don’t know if that is down to the letrozole or the Abemaciclib. I will be pleased when I have completed the 2 years on Abemaciclib but I am willing to put up with the side effect if there is a chance this drug will prevent recurrence and give me longer with my family.

Hello Hebra84.  I started Abemaciclib nearly a month ago after treatment for grade 3, stage 3 breast cancer (chemo, surgery and radiotherapy).  I was told by my oncologist that the trials showed 25% of those on the placebo had the cancer return within 5 years.  For those who took Abemaciclib it was 17% (this is the third reduction mentioned by Shade).  These numbers might be different for your particular type of breast cancer so get your Oncologist to give you the stats.  My feeling was that neither of these were very happy numbers but clearly one was better than the other and the drug was worth trying.  

I have found the side effects pretty depressing to be honest because I was finally feeling more like myself before I started the drug.  It is early days though and most people seem to suggest side effects ease after 2 months. 

My current feeling is that is that it's worth giving the drug a go for at least another month but if I continue to feel as I do I will have to think very hard about whether I want to continue. The side effects are no where near as bad as chemotherapy, but it's different because I've got to consider whether I can live with them for 2 years rather than just a few weeks.  I'm 46 years old and used to have a very active life, I'm desperate to get back to that.

If you search on this forum you'll find a lot more ladies who have been on Abemaciclib for a lot longer than me and I think almost all are tolerating the side effects but I do think you need to be prepared that the first few months could be quite challenging emotionally and physically.  You should also discuss what dose they want to put you on as the side effects seem to be less with a lower dose while still providing the same level of prevention impact.  Best of luck x

Hi Hebrew 84

i started Abemaciclib December 2023, the oncologist did reduce the dose because of the diahorria  and weight loss,  then because I was suffering  with terrible acid reflux the oncologist decided to take me off them because I needed to have a camera because of the acid reflux and weight loss.  I am now waiting for results from the camera. But my oncologist has suggested to start back up in a few weeks but reducing the dose to 50mg they will take me off them if I still cannot tolerate this tablet.  I went through chemotherapy and radiotherapy with no problems. But the abemaciclib  did make me ill. Hopefully with the break and the reduction in dose I will be able to take them.