Abemaciclib

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Is anyone else taking this drug

I gave reduced disease from 250mg to 100mg as side effects were horrendous. 

Interested to know how others are

  • I had to go from 150mg to 50mg due to horrendous side effects.  50mg is very doable for me and have now been on it for a year.  There are lots who tolerate the 150mg dose very well so we are not all the same.  I hope you get on ok with 100mg. Best wishes. Mx

  • Hi, I too am taking this. Started on 150 x2 a day. After a month had it reduced to 100 x2 a day. Still have to rush to toilet and tummy cramps. Does anyone know if life will ever be the same. I can bearly get on with my day with side effects and sleeping.

  • Hello, I am nearing the end of my journey on this, 2 years in August.  Yes was difficult for a while, imodium was so helpful. Also I know now what can set off a jippy tummy, with me it was pastry and bread. It was reduced last August to 100mg instead of 150mg after a year. The difference is amazing, I can sleep through the night now, eat with care and enjoy life a bit more. I drink lots of water but unfortunately cannot really drink alcohol!! I'm wishing you luck and hope things settle down a bit.

  • Well done Stunner, it gives me hope when I hear that others have almost completed their two years. In about 4 weeks I will be 25% done. I’m still on 150mgs and so far I am coping with the side effects of Abemaciclib. This isn’t an easy journey but these forums have given me support. 

  • I requested to start on a low dose and work upwards, so I had 1 month on 50mg x 2, then moved up to 100mg x 2.

    I had the choice this month, move up again or not, but as I've just had my first zoledronic infusion I asked to wait till next month.

    I had no energy from around days 4-7 then picked back up.    I expect that to happen again when I next increase.

    I've had no other issues.  Diarrhoea is apparently usually common and I've not had that.

    I've got no idea why they normally roast us with the highest dose straight off, instead of allowing our poor battered bodies to get used to new things when we've worked so hard.

  • Hi Weybridge

    I have been on Abemaciclib max dose for 13 months and I have fortunately had minimal side effects. I found in the early days that I sometimes had to dash to the loo but I manage this through not eating within 2 hours of taking the tablet. I was dreading taking it after reading about the potential side effects but my experience has been a very positive one and the research so far is very positive in relation to recurrence. I eat fairly normally on it also but I have not drunk any alcohol since taking it as I know Abemaciclib can be hard on the liver and kidneys. 

    I know that if the side effects are challenging the dose can be reduced without affecting efficacy.

    Best wishes

    Lizzie 

  • I'm very confused, is there anyone on this meds who has gone back to how they were. I don't know if it's OK to feel ill or should I be OK now.

  • I’m almost back to normal but then I was reduced right down to 50mg twice daily.  Letrozole has its side effects too. For me it’s insomnia and sometimes aching hips.  Hope you start to feel normal again soon. X

  • I just don't know how I'm meant to feel. Sleep alot, tummy cramps rush to toilet, feel sick and no energy. I know it comes with side effects so do I just expect that this is it now

  • Hi Sharron

    I am more or less normal on the max dose. You could try a further dose reduction perhaps in discussion with your oncologist? Lots of people find imodium works too. Do some foods or eating tines cause you more problems?

    I am sorry that you are having such an unpleasant time - I hope it gets better for you.