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.  

Parents
  • 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

Reply
  • 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

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