Abemaciclib Anyone struggling?

Hi,

So sorry to hear you're struggling with it. I'm two months in too, and doing OK, though have had appetite loss. My doctor told me that different people can metabolise different doses, but they have to prescrive the maximum dose to start with so that those who can metabolise 150mg aren't under-dosed. They said that if I got side effects, they'd drop it from 150mg down to 100mg, and can go down to 50mg if needed. I queried efficacy at lower dosages and they said the clinical trials showed that even at 50mg, it's just as effective, if that is the maximum dose someone can metabolise. I'd suggest talking to your Breast Oncology Nurse about dose reduction, as the side effects should be managed so that they are tolerable - you might just need a lower dose. 

Good luck with it - it's horrid when a new treatment feels like a set back. I had a white blood count/neutrophil dip, picked up a chest infection and ended up in A&E, which brought back so many bad chemo experience memories. And I also think dealing with these adjuvent drugs when friends and family behave as though 'it's all over'  can be even harder than the chemo, radio, surgery etc. It feels endless, doesn't it?

Hang on in there. I really hope things start to improve for you. Xx

I started Abemaciclib Oct last year .I managed for 6weeks on 150mg ,but the stomach cramps were so awful ,I had a break for 2 weeks and started 100mg when it resumed .It had been going OK, with stomach problems only cropping up once or twice a week but easily stopped with loperamide and/or buscopan .I was feeling tired though ,and it was getting an effort to motivate myself to do things .Then another problem has now cropped up .I had a cough that wouldn't clear so went to GP about 5 weeks ago ,he sent me to a&e as heartrate was very  high .I had blood tests ,chest xray and they saw something on a lung to be checked .I had phone call next day from chemo unit ,and they said stop abemaciclib straight away till further checks made .I had CT scan a week later ,and they found a blood clot on the lung ! Also some scarring on the lung that wasn't there a year ago.I was given blood thinners and steroids straight away which hopefully has caught it in time .Spoke to oncologist and they need to try and find out what caused it ,could be abemaciclib or possibly radiotherapy that ended Aug 2024.I was given option to resume abemaciclib but seems a bit dodgy to restart when we don't know yet if that has caused the lung problems,so it's on hold for now .oncologist did say that after 7 mths it could be the benefits of abemaciclib are being outweighed by side effects.  I wasn't really aware of the links with lung problems ,so if you do get breathless or a cough make sure you get checked 

Thanks so much for your response. It’s hard to know what to do for the best when you know that these drugs aren’t available to everyone. I’ll definitely ask about reducing the dose if it doesn’t settle. Thanks and good luck with everything x 

Thankyou and good luck with everything x 

Hi,

I’m 16 months in and have been not too bad with symptoms in that they settled down. The worst was excruciating gut pain in the first couple of months, which I thought I couldn’t possibly live with for 2 years, but it moved on as did the diarrhoea, enabling me to get more veg and fibre back into my diet. 
I do feel ground down even though my blood tests are fairly ok. Some things I feel could be due to the letrozole or the abemaciclib- hand and foot, nails and hair. Sinus congestion, watering eyes, slight sore throat and cough is the abemaciclib. I was on the letrozole for four and a half months before starting abemaciclib and it wasn’t troubling me much at all beyond a return to menopausal hot flushes, so I’m hoping that I’ll be sort of ok when I’m on that and nothing else next May.

You were absolutely right MIBM in saying that it’s a long haul with this treatment, whilst friends and family assume that you’re fairly well through with it. This is quite a wearing treatment even if it’s not an operation, chemotherapy or radiotherapy, but I think having had all those adds to the weariness one (I) can feel.

I have done my 2 years on Abemaciclib and l also struggled at first . My oncologist reduced my dose to 100 mg this made life so much better, I remember the tummy issues well . I had no other side affects that restricted my life and got through the 2 years knowing how lucky l was l had been given this new drug for early BC. 
Keep going look after yourself x

This is good to hear! I am committed to this drug and feel lucky to be having it, but have felt a bit weary and low recently.
At my last review at the end of June I was given the choice of changing down to 100mg whereas I’d always been encouraged to stay on 150mg as I’ve never reported really bad unmanageable symptoms.
I did say that I’d do another 12 weeks on 150mg, but would probably wish to change in September to hopefully have a better winter than the last one with two prolonged chesty coughs and some vaguely viral fluish episodes. So I definitely will! 
One more Zometa in Jan and down to just letrozole in May!