Hi, I was searching posts re abemciclib as I have been offered it. I too just feel completely deflated when reading about it. Did you start it? I just finished radiotherapy yesterday and if I’m going to agree to it, it will need to start within 8wks. I’m so sick of having no hair and the thought of that for next couple years at least is wrecking me. Then all the other nasty side effects. I still haven’t had chat with oncologist about it so I fint know how much or little it affects prognosis. Senting love xo
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Hi @Sam3 I should have started it already but have had a chest infection and am on antibiotics (plus steroids from tomo). It’s been quite bad - I’m so fed up being ill!
I was told the main problem is usually diarrhoea. 
. I don’t think hairloss is a big risk, maybe some thinning. I too would absolutely hate losing hair again! My oncologist did say that if it really didn’t suit me I could stop it as people were never offered it previously. Part of me does wish I’d just declined it! but at the time I thought I might as well give it a go! When would you be starting? If/when I do start it will be next Friday which is 11 weeks since I finished radiotherapy. Let me know what happens… Anne x
Hi Sam3,
I started yesterday and so really really early days), however the oncologist did ssy the main side effects are diarrhea and white cell count goes down and thats why first 2 cycles its bloodworks every 2 weeks. He also mentioned hair thining and was specific in not hair loss but rather thining. The nurse also mentioned that tĥe side effects can be managed but its rare that the patient is able to stay on abemaciclib the whole itme without teeking the dose or even changing meds, it’s really touch and go, specially for the first 2 cycles, however there are always bloodworks to monitor the effects on the white cell count.
For me, I didn’t ponder not having it as there is a shadow on my spine still to be determined what it is, so yes I’ll be taking whatever is on offer but that is me 
Hope this helps, and let us know how you get on please xx
Hi Anne, thank you for your reply. I do hope you can shift your chest infection soon but I’m sure you don’t relish starting the new med. if I do start it will be within next 8wks I think. My oncologist said I’d have to start within 12wks of starting tamoxifen. I am sick of thinking and worrying about it, life has just been taken over. I feel a bit sore in joints this eve, probably tamoxifen but I think I’m so fed up, I just feel on a downward spiral! I don’t know when I’ll get seeing the oncologist. I’d like to start on a low dose but I don’t know if they will agree that xo
Oh I hope you get on ok! I totally get your rationale for starting it. I really do hope the shadow on your spine is something innocent and you can have your mind put at rest soon 
I do want to throw everything at this disease as I cannot stand the thought of leaving my children. I’m just feeling thoroughly fed up on this journey. I had been looking forward to at least looking a bit more like me (with hair) even if I don’t feel like me. Then I read others saying their hair just didn’t grow at all while on the medication and so I’m worried about that and the other horrible side effects. Were you given the option to start on lower dose at all? I feel like that wouldn’t be as scary! My white cells struggled through chemo so I also hate the thought of being so compromised in that respect again too. Xo
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Hi @anne3 ,
Sorry completely missed your post… to say it has been a bumpy is an understatement… how are you feeling? Did the oncologist say anything about alternative drugs? I had no idea that there was some sort of timeline … were infusions discussed? I was told to have 1st of Zoledronic acid a week after abemaciclib but because i had a tooth taken out the dentist said 8 weeks, but if oncologist says different I’m following the oncologist’s advice - i think the dentist may be overly cautious. So now I’m worried i might miss any timeframe window to start the Zoledronic Acid… it’s nothing i can control so it is what it is
Please let us know how you’re feeling,
Hugs xx
Hi @sam3 yes it’s a bit like I’ll be swopping all this coughing for possible problems at the other end! but if I’m feeling positive I think I might be fine, you never know! Don’t relish any of it and yes I too feel like I’ve been on a downward spiral since I discovered the bc 15 months ago. I have had much more achey joints since starting letrozole too, (post menopausal version of tamoxifen), feel I’ve suddenly aged 10 years . I don’t know about the timelines as I started the hormone meds in mid December so at least 20 weeks ago, and finished RT over two months ago now. They agreed to delay the abemaciclib as we had a holiday with the family but then of course I came back with this virus/infection! Good luck - keep us informed! x
Hi @dhmb - do let us know how you get on with abemaciclib. Yes the dentist wouldn’t do anything when I was within 3 months of RT but if abemaciclib affects white blood cells maybe I’ve missed another window? Timelines weren’t really mentioned to me and as I said to Sam I’m already way outside them. They’ve already moved the zolendronic infusion once but will book again once I get started. No alternative drugs were mentioned either. Still feel rubbish with this infection but apprehensive about the new meds too. So I’m a bit up in the air! People seem to think all is great though because I’m ‘nearly there’ but it’s more complicated than that 
Totally understand your going ahead no matter what, especially as many people don’t have so many side effects apparently and considering you have an unexplained issue still to be investigated. Are they planning any further scans or tests for you? After all you’ve been through too! You’re doing amazingly forging ahead 
so I do wish you all the best. Keep us informed. x
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Morning @anne3,
The oncologist did mention further scans (first 2 were inconclusive 
) but “lets get you on abemaciclib and zoledronic acid first” and he definitely know what he’s doing, so we shall see i guess.
Morning @sam3,
Last night wasn’t great side effects from abemaciclib kicked in and my rear end wasn’t happy at all 
Worse bit was actually the cramps and think the anti-diarrhea definitely did help!
Called the nurse because it got to a point nothing was left inside… she advided buscopan for the cramps and said that because I’ve only been on abemaciclib since Thursday it’s way too soon to discuss dose reduction etc…
I didn’t have buscopan, that I thought I did, so ended up currled up and fell asleep. Slept the whole night, and although i don’t feel exactly myself with a throbbing headache I’ve eaten breakfast about so we shall see… The nurse did say she’d call me in the morning to see how I’m doing.
In all of this what get to me is that i was supposed to have a Toby Carvery with a good friend and now i need to cancel because A) not feeling confident in leaving the house and B) probably not the best food to eat for now… like come on, I never have plans and now that I did have … great perfect timing oh well reschedule it is…
In a nut shell: not great but could be worse I guess hopping for a one time thing kinda situation… who knows
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Oh goodness, that sounds horrible. I wonder why they can’t start on a lower dose?! I hope you are feeling better? Xo
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Thank you for the best wishes @sam3 
Feeling much better today, even been in the gardening pruning and repotting
Yesterday felt absolutely rubish, feeling absolutely drained of energy.
One day at a time and one task at a time… resting a bit on the sofa, a bit of crochet and YouTube and then ironing is on the agenda for the afternoon which to be fair i like doing - yeah I’m weird that way 
- it’s the getting started that’s a pain … oh well…
Have a lovely day everyone
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This week update:
Yesterday had to go to A&E, bloodworks were low but still ok so was sent home with 2 type of antibiotics and stronger pain relief, was confirmed a viral infection. It’s really starting to sink in just how much we’ve put our bodies through… oh well, like everything else, this too will pass. Hope everyone had a nice weekend xx
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@dhmb Sorry to hear you’re not so well. I hope it passes quickly and the meds do their job.
You are so right our poor bodies have been through a lot! X