Hi all. Just wanted to put this out there for anyone who is interested.
I was offered Abemaciclib as part of my ongoing treatment. It’s quite a new drug, very expensive and only offered to people in certain circumstances. I really struggled to decide whether to take this drug as it is so awful and has the most horrendous side effects which are very common in comparison to most drugs whose side effects are rare.
I decided to take the chance and yes, they do come with awful side effects.
I do lots of research on most things that affect me. I came across an article that stated!!
There are 3 doses for Abemaciclib, 150, 100 & 50 mg.
Apparently there are no more benefits for taking 150mg than taking 50mg
During trials, no more people had a recurrence taking 50 mg than them who took 150mg.
I have checked this with 2 cancer specialists who have confirmed this is correct.
I have now requested the lowest dose and some of the side effects seem to be better. I’ve only been taking the 50 mg for a few weeks, so time will tell I suppose.
If you are suffering with the awful side effects of these drugs, you may want to check this with your Oncologist?
I am on abemaciclib and have been since July ‘24. I was started on at 150 mg dose and was fine for a couple of months but the bowel side effects began and I was reduced down to the 50mg. I was told the same, that this dose would work just as well as the higher doses. I struggled with that but have had to trust what they say. They side effects have pretty much disappeared. It makes me tired but apart from that im fine on it. Im also on fulvestrant 4 weekly jags and denosumab 3 monthly jag. Im stable so far so hoping this continues. I, however have nerve pain and hoping to get to the bottom of that. Wishing u well. Sandra x
Hi Sandra, glad to hear you’re doing well on the abemaciclib, I think you’re one of the few. I have the diarrhoea too and fatigue, kidney function and white blood cells low. Got another blood test on Monday and Oncology Wednesday, so we’ll see what my bloods are like then? I’ve asked that 5ths time they test my iron, magnesium, thyroid etc to see if there’s something else underlying that’s causing the fatigue.
It seems that they give you the higher dose and work down the dose rather than the opposite because it’s more financially viable for the drug companies and they dictate the doses. Always about money
My husband suffers from quite bad nerve pain following a serious motorcycle accident, I also have numbness under my arm where they removed all my lymph nodes. I’ve been researching it lately and have come across a cream that is supposed to work brilliantly on nerve pain. It’s called Mira Organics pain relief and repair lotion. I’ve ordered some from Amazon, it’s not yet arrived. Whether it’s any good or not, I don’t know, but anything is worth a try when ur in pain.
Thats interesting about that cream. Would be interested to know if it works. I hope u manage to get those checks done, it’s bad enough to be dealing with the cancer. I seem to tolerate drugs quite well, even chemotherapy was manageable in 2017 and now the secondaries treatment. Wishing u the best. Sandra
Hi I was on this drug for the full term, and despite getting my dental check a the start, then took various breaks due to other treatments needed, dental and shoulder but not as a result of the drug. they do start you on the high dose and i know only a few with a cast iron stomach to remain so, my dose was eventuall y reduced to 50 mg. right from the start i noted all side effects, typed them up and reorted to the team often prior to their phone call, this helped with their research and also helped them to decide dropping my dose sooner than just waiting. Initially i found the Letrozole i was on bunged me up and the abemaciclib loosened my bowels, but by timing when itook my doses i was able to fine tune when i needed to be near toilet facilities. I also always carried a emergency bag, with wet wipes change of underwear, pads etc. I made sure always to have one of the Macmillan ‘toilet’ cards with me on keyring, which simply asks th shop, or DIY store or whereever can you please use their toilet facilities in an emergency. We still use this card primarily as there is a shortage of public toilets in some places.
Yes the side effects read horrendous, but not everyone gets them all. I also made sure i regularly ate Natural Yoghurst and had high dose Acidophilus in my diet, which i’m certain helped setle my bowel. Give it a go i say, and if you need a week free due to holiday or other important days, they can offer these. but the choice is yours, and i hope my input helps you with your choice. Love and light Moonsox xxx
Hi Moonsox, thank you for your reply. I am managing the diarrhoea reasonably well with prescribed loperamide taken after every loose motion. But I will keep in mind the acidophilus, are these prescribed? I eat lots of yogurt in my diet anyway, always have.
I’ve been a healthy, fit person most of my life and the only medication I’ve ever taken regularly was the contraceptive pill and then HRT in later life. So having to take all these different meds now, doesn’t sit well with me but needs must I suppose.
Hi. I’ve been on Abemaciclib since June 24. My initial side effects were disabling 150mg- fatigue, diarrhoea, dysasthesia, thinning hair, lifting nail & yo-yoing white blood cells.
Diarrhoea settled after a few months. Fatigue was the most hard side effect, but got back to work on slightly reduced hours.
Dose reduced to 100mg after a year due to fluctuating white cell count. Initial side effects all settled but fatigue. Lovely onco nurses ran some extra bloods & found I was low in b12- since having b12 injections it’s like I have new batteries. My white cell count can still drop but I’ve been healthy & in work since I went back- I’m a health visitor so around young children.
Hi there, glad to hear that you are finally tolerating the drug. I’m having all the extra blood tests this time to see if the fatigue is being caused by something else. The problem is, 3 of the meds I’m on have fatigue as a side effect so it’s hard to tell which is causing what? I assume you only have four months left on them, so hopefully that will pass quickly. Unfortunately, I didn’t start mine until November 25, so still a while to go yet.
Hi the Acidophilus is bought fro my local specialist Healthcare shop, not Holland and Barret. Their product although vegan based just didn’t do the job. i didn’t need HRT, and followed a canadian guidance for the menopause, being totally non dairy i only got very inor symptoms or forgetfulness. No hot flushes. i only ever got my first flush when i started the letrozole but then only for the first week. Prior to breast cancer i was extremely fit, but i’m getting back there now having also returned to horse riding again.
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