Abemaciclib

Hi GillP  I'm one of the champions here on this group and I just noticed you've not had any replies yet.  The forum is quite busy and your post has dropped a couple of pages, so my response will bump it back up to the top and hopefully someone also on abemaciclib will be along soon.  I'm myself on letrozole and not had the same experience.

You might also think about calling the lovely folks here at Macmillan. They are available on 0800 808 0000 and can offer advice and have lots of information to share.

Best wishes 

Hi GillP , I haven’t been on this drug but there have been many threads about it. I’m going to tag the lovely moomy as I think she is on it and at a reduced dose. Apologies if I’ve got it wrong though! Love and hugs, HFxx

Hi, the evidence from the Monarch E trial suggests that dose reduction doesn’t affect Abemaciclib’s ability in reducing recurrence. We are started on the high dose of 150mgs and then many require dose reductions. A dose of 150mgs may give optimal benefit for some but others will receive the same benefit on a reduced dose. 
I am 18 months into the 2 year course and it hasn’t been an easy journey but you can still enjoy life. I take loperamide prophylactic if I am going out but always after I’ve had my bowels opened in the morning. I have loperamide with me at all times, I ware a panty liner(just in case). 
I hope you find a dose reduction causes fewer side effects. 

Thankyou. I'm hoping the lower dose will suit me.

Hi GillP , I was alerted to your post by HappyFeet1 and yes, she’s quite right, I’m now around 5-6 months into my 2 years on Abemaciclib. 
like you and everyone on it, I started on 150mg twice a day, stuck that for 2 months with not just the dreaded D but also nausea and lack of energy. I was advised that dose reduction does not reduce efficacy. So I dropped the dose to 100mg twice daily for another month. Blood tests were still fine but the side effects continued so I asked to reduce again. I’m finding the 50mg twice daily dose is ok, my get-up-and-go has (mostly) returned and the D (although still looms) is manageable as I recognise the early signs, and cope by just taking one loperamide. I’ve also now and again needed cyclizine which I was prescribed for the nausea. 

I hope that reassures you? I asked for an increase in the amount of boxes prescribed this time as I’m going on holiday, so requested 2 rather than the 1 box. To my surprise I was issued with 3! So my next Onco appointment is after I return from my 3 weeks to Yorkshire, but I’ll have to plead again as the blood test will impinge on a long weekend away again (this time to celebrate a big birthday) 

Hugs xxx

edit; I’m also on Exemestane as my bc is oestrogen positive 

xxx

Hey, thanks for this. I've been off abemiciclib for 4 days and already feeling benefits, so I'm hoping my bloods are back to normal next week to start a lower dose. And I don't know there was even a lower dose

 Sounds like you've sussed out how to cope and glad you're at the rail end of it.  Good luck. And thanks again x

Hiya ,I started about end of October and am just starting cycle 6 .I started on 150mg ,first week was fine but after that I started getting the most awful stomach cramps .The pain was like I had a vice clamped round my middle and came on very suddenly .I found taking Buscopan or Colpermine helped along with loperamide, but it still meant I was scared to go out anywhere .I persevered on 150mg for the 2nd cycle but only lasted a couple of weeks then was told to stop it as the side effects were awful .Cycle 3 I was dropped down to 100mg and it's made such a difference .I rarely get stomach problems but if I do feel like something is starting to come on ,j straight away take a buscopan and loperamide and it stops it getting any worse . I do notice I get tired but nothing that a bit of a rest doesn't cure .So far ( fingers crossed) I havnt had any problems with nails,hair etc .It's reassuring to know if I do start getting problems I can always drop down again to 50mg ,but for now 100mg is fine.Now that I am starting cycle 6 I only need blood tests every 3 months and they have given me 3 months supply of tablets ,but said to contact them if any problem in the meantime .Good luck with the tablets, but definitely worth dropping dosage as its more likely you'll stay on them if side effects are reduced 

That's fab to hear. Thankyou. 

Just as an aside, I noticed the nails on my hands have been breaking and splitting easier so have invested in a strengthening nail polish and a non acetone remover, using the varnish daily was what another lady suggested, for 6 days then remove for a day. Will see how it goes and mention to Onco when I go next. 

Hugs xxx

Oh and now and then (pretty rarely, really) I can heave, that’s when the cyclizine really can help. 
hugs xxx