Abemaciclib

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Hi 

I was diagnosed at 46 with Invasive Lobular Carcinoma in January of the year.  I've had a right side mastectomy and axillary lymph node clearance followed by 8 rounds of Chemo (4 EC & 4 Paclitaxol) then 15 sessions of Radiotherapy.  I'm now on ovarian suppression injections and Letrozole - I am about to begin on Abemaciclib for 2years.  I know this drug can have some unpleasant side effects,I wondered if anyone is on this drug and could share some of their experience.

  • Hi there.
    There is quite a lot on here about this drug and you can search for threads using a keyword if that would help you.

    I have had three months at full strength and I’m having a weeks break before starting at a lower dose.

    The main side effects I have had are nausea, which I find is best kept at bay by eating regularly, and diarrhoea which has been extreme and considerable. At my hospital, you are prescribed anti-diarrhoea tablets hand in hand as it is such a common side-effect.

    It can be quite daunting starting a new therapy can’t it, especially if you feel quite well at the moment and you don’t want to risk feeling less well than you do. I can’t say that I feel as well on it as off it, a greater level of fatigue probably being the most overarching and constant effect.

    I hope you get on well with this drug. I did seek advice from this forum about managing diarrhoea while on the drug a few weeks ago and people came forward with some useful tips - example having an emergency rescue kit that you take about with you as the diarrhoea can be very severe and very sudden onset.

  • Hi, I think the anxiety of the side effects is on all our minds when we commence this medication. Next month I will have completed one year of the 2 year course. Some of my side effects are definitely due to the Abemaciclib but some may be due to the letrozole.

    My side effects have been gastrointestinal, obviously some diarrhoea, but I have managed it well with loperamide. We are all different and I seem to be getting used to the signs an episode of diarrhoea will be a problem and often take loperamide before it occurs. I feel more tired, but doing exercise does help with the tiredness and muscle ache. Initially I also felt dizzy/lightheaded but that has passed. My eyes water when outside in sunshine, cold weather or wind (sun glasses help with this). My skin and hair are dryer but creams and a hair mask help with this. Occasionally I feel nauseous but I’ve not been sick.

    I have had 3 viruses over the past year and required one course of antibiotics as immunity is lowered on Abemaciclib. I hope my experience doesn’t deter you from taking this medication. I feel fortunate to be offered this medication and hope it prevents secondary breast cancer. I am leading a normal life. I have been on several holidays but they have been in the UK. I confess to being anxious about going abroad but that is my anxiety others do.

    I wish you well on this cancer journey none of us wanted . 

  • Sending much love to you for all you have been through.

    I've been on Abemaclicib for 6 months now.  I was very apprehensive before starting it - having also been through full chemo, the thought of another drug with all the listed side effects (which all sounded horrific) was overwhelming.  However (and I know we are all individual, so everyone's reactions to the drugs are different) I have found it to not be as bad as I feared - I am fatigued and have bouts of diarrhoea but it has been tolerable and manageable and I am just relieved to not have the full side effects they mention in the leaflets.

    I've found taking vitamin b12 helps, and I stopped drinking caffeine (I gave up alcohol a while ago).  I try and focus on a healthy diet as I found I dont suffer as much (diarrhoea) if I avoid sugar / spice / fatty foods and caffeine (so all the fun things!).  I still manage to work full time, look after the kids (I'm a single mum), walk the dog etc, I just have to rest up each evening as I'm spent by the end of the day.  But that seems par for the course and like others have said, I'm grateful to have this drug to hopefully reduce the risk of recurrence.

    Wishing you all the best with it xxx