Hi there, I just wanted to make you aware about something I recently discovered regarding the horrible drug Abemaciclib. I am high risk of my breast cancer recurring so I’m on this drug for 2 years along with anastrezole and adcal3 for 10 years.
I’m one of those people that researches everything. I came across an article regarding this drug, apparently there are only 3 doses 150, 100, 50. The side effects of this drug are horrendous, mainly the severe diarrhoea that most people seem to suffer from.
I learned that whether you’re on the highest dose or the lowest, there is no more benefit to taking the higher dose. I took this to the oncology team and they agreed that this was true. I was dumbfounded, asking why do they start everyone on the highest dose then? Apparently because the drug is so expensive, the drug companies want to make the most money, which if true, I find incredible.
With this in mind I asked to be taken off the 150 mg and reduced to the 50 mg.
Since then my diarrhoea is almost non existent, my fatigue has reduced dramatically and I have loads more energy. My blood tests are near to normal, although some things still a bit low, but where they would expect them to be whilst on this drug. Before, everything was low, kidneys, white blood cells, platelets etc.
Please don’t take my word for it, do your own research and ask your oncology team. We are all individual and i’m no Doctor, but I just thought I would mention it for the people who are really suffering on this drug. May be worth a mention.
I am still suffering greatly with the insomnia ( am about to try acupuncture) Brain fog and memory issues, I put that down to the anastrezole. Any tips, greatly appreciated. Hope you’re all as good as you can be, take care of yourselves
I am due to go on abemaciclib, tamoxifen and zoledronic acid after I finish radiotherapy. I have stage 3 high risk occurrence due to 7 positive lymph nodes and tumour removed. I have done 6 rounds of chemo also. I’m 51, I am finding it really hard to decide about all these treatments especially after enduring months of feeling terrible and feeling when is it ever going to end! I met with my oncologist last week and I tried to say to him about starting off on a lower dose of abemaciclib and he was not interested. So thank you for bringing this to my attention because I am going to be persistent that I want low dose. I want a break from everything so I told him I won’t be starting anything until end of September. It’s very hard to be expected to take all these drugs and just get on with it, and deal with all the horrible side affects so I hear you!
I’m really sorry that you find yourself in this position. Your story sounds very similar to mine. I am 66 though so I was put on Letrezole, later changed to anastrezole instead of tamoxifen because of my age. I’m on them for 10 years. I was also given Abemaciclib for 2 years due to my 7 out of 12 cancerous lymph nodes and high risk of recurrence. I suppose we are all individuals and have to make these individual decisions for ourselves. I know for me, after the research I had done and the response from my oncologist, 50 mg instead of 150 mg seemed the right option. My side effects have improved no end. Don’t get me wrong, I still have side effects but in the main, much better than before.
The thing is, we will never know if that was the right thing to do? The cancer may return and we may blame the fact that we dropped the dose. (It may have nothing to do with that?.) on the other hand, it may not return and we will have had years of lesser side effects and a better quality of life. Who knows. As I said, individual decisions.
Not sure why your oncologist poo pood it? Maybe do some more research yourself and speak to some other professionals for their opinions. What part of the country do you live in? Maybe that makes a difference??
The side effects are awful for most people, so don’t just lay down and take it, do your homework then make your own informed decision.
I am due to go on abemaciclib, tamoxifen and zoledronic acid after I finish radiotherapy. I have stage 3 high risk occurrence due to 7 positive lymph nodes and tumour removed. I have done 6 rounds of chemo also. I’m 51, I am finding it really hard to decide about all these treatments especially after enduring months of feeling terrible and feeling when is it ever going to end! I met with my oncologist last week and I tried to say to him about starting off on a lower dose of abemaciclib and he was not interested. So thank you for bringing this to my attention because I am going to be persistent that I want low dose. I want a break from everything so I told him I won’t be starting anything until end of September. It’s very hard to be expected to take all these drugs and just get on with it, and deal with all the horrible side affects so I hear you!
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@lilcock just wanted to say thank you for posting the info, I’m on a break from abemaciclib after 150 and then 100 dropped my neutrophils too low, now having a break until after my long waited for holiday! This info is really useful, I did research but didn’t really believe that 50 would have same outcomes as 150 so went with what they gave me, I now wonder if I’d started at 50 if I would have had to have breaks!
Hi Loupy, it’s unbelievable really that this information isn’t given to us but they do say the drug companies rule the world !!
Like I’ve said, I’m no Dr, don’t take my word for it, do your own homework. But I felt it was right for me and although I’m still suffering side effects from the other drugs, they are much improved since dropping to 50.
Good luck with what ever u decide and have a great holiday
Thanks @lilcock I have done some research it’s a minefield out there though but think my neutrophils have taken it all out of my hands as if they improve enough I’ll be dropped down to 50 anyway - hopefully I’ll tolerate that!
Brain fog and memory issues, I put that down to the anastrezole. Any tips, greatly appreciated. Hope you’re all as good as you can be, take care of yourselves 
but think my neutrophils have taken it all out of my hands as if they improve enough I’ll be dropped down to 50 anyway - hopefully I’ll tolerate that!