abemaciclib & letrozole

About to start taking abemaciclib.  Does any one have experience of this? I am already taking Letrozole and am waiting to find out about a lung nodule that cant be biopsied. They can only monitor this with scans.  They have offered removal but dont know if breast cancer has spread there.  The waiting is awful.  

  • Hi Sticky,

    A very warm welcome to our forum.

    I am so sorry to hear about your symptoms. Can I ask what scans you've already had? Waiting for results is always a worrying time - in fact, most of us would agree that it is the worst part of our cancer journey. Have they said how frequently they will be monitoring you.

    I'm hoping and praying that your breast cancer hasn't spread to your lung.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi, I'm sorry you have no answers yet but I'm on same path with same medications I also have a injection once a month for bones, I had bc 10 years ago but has since returned with mets in bone and spine, can be managed but not cured, i have ct scans every 3 months, I take letrozole daily and abermaciclib twice daily, injection every month, after my replacement hip operation (that's where it decided to manifest again) last year I returned to full time work, a very active job and for most part feeling great, the abermaciclib does take its toll with nausea for me but I've have found a way around it, it just takes a bit of time and perseverance I found, if you would like more info please do not hesitate and I wish you all the best x remember it's something you live with nothing more xx

  • Hi Sticky, I'm sorry you are waiting for scan results...the waiting is awful...I really hope that the news is good.

    I'm also on letrozole and have been taking abemaciclib for a few weeks now. Early days, but I have found that I have definitely needed the immodium alongside it. I have been advised that I can take up to 8 a day. 

    The mistake I made was thinking that I shouldn't take so much immodium,  so if I wasn't going out of the house much one day I tried to avoid taking it, but then if I was out all day I would be taking 6. As a result my bowels have been from one extreme to the other.  I've since been advised by the nursing team to take as many immodium as I need every day and then gradually reduce them, and this seems like good advice.

    I'm also on zoladex injections. I get hot sweats and joint stiffness from letrozole/zoladex, but started these medications weeks before the abemaciclib,  and I have found these side effects havent worsened with abemaciclib.  

     And I would say that it isn't like when you have a D and V bug.....even though I'm on the loo a lot, I don't feel ill like when you have a bug.

    It does come on quite quickly though, so I would suggest always knowing where your nearest toilets are when you are out and about. 

    I'm keen to carry on with it as it has been shown to reduce risk of recurrence,  and I'm at high risk of this.  

    I hope you find that any side effects are mild for you, and wish you all the best.

    JulieLancs xx