Forum Discussion
Abemaciclib Verezenio side effects
Hi Ladies, I have recently started on Letrizole/Hormone Therapy, and Verenio / Abemaciclib and am struggling with the side effects. I am in the fortunate position in that both these drugs are bein...
I'm almost 15 months taking abemaciclib. I'm on 100mg x 2 daily and it's manageable, having reduced from 150mg x 2 which was unmanageable, my body was having none of it.
My bloods have been good the whole time, my stomach is another story. Milk is a definite no, small amounts of dairy are ok, and from time to time it rebels for no apparent reason. I've reached a point where I know the signs and I'm balancing things with gastro stop, taking 1 every few days seems to help a lot and keep me out of trouble, and life is fairly normal.
My oncologist has been great and told me I can take a few days break if it gets bad, which I've had to do occasionally. He is keen to keep me on it for the 2 years, even if it means reducing the dose again, and taking short breaks, but it seems to have settled down a bit more recently. He also said that can happen as well.
My hair is ok, it shed quite a bit a while back, but has also settled down, so I'm not sure if that was just it settling back into a shedding pattern. I feel like it's slightly thiner at the temples, but my hairdresser says it's normal for menopausal women to thin slightly at the temples, and to be honest it's only me that notices it when I pull my fringe back.
As you say, we're still here, and abemaciclib has had good results so far, so I'm happy to stick with it.
Hellooo!!
thank you! Spoke to ONC last night and he agreed that my dose needed to drop. My platelets have dropped again so he was going to reduce the dose in any case.
Will do another round of bloods in a month to see how the platelets are responding to the lower dose. There is no way I could have done another year on that higher dose. My ONC told me that almost no one can withstand the full dose and almost everyone has a reduction. I have a friend who is doing the full dose but the amount of horror stories she has told me about not getting to a toilet in time is pretty awful.
I will just need to be patient with my hair. It could always be worse!!
My oncologist told me that research shows a reduction of dose does not seem to affect the outcomes, and it was more beneficial to keep me on the medication at a lower dose than to stop it all together. If I can tolerate it that way, it's still beneficial, rather than have to give up because the higher dose is not suitable for me. 150x2 per day was absolutely not achievable long term for me, I had to stop after 5 weeks, it was awful. I had a 4 week break and started again.
As this is an added preventative treatment for me they said they want me to have a good quality of life as well.
The trial research is showing that people who were offered a reduction of dose early on were much more likely to finish the 2 years. People who were not offered a reduction were more likely to stop treatment, which I would have done as my body just couldn't tolerate it.
Sounds like our doctors are reading from the same literature, which is comforting. I'm in a similar boat to you - high risk of recurrence so this is preventative and I would like to give myself the best chance possible. If I can have a dose that doesn't impact my quality of life, then it is a win win in my book!