In ER+-positive breast cancer, the cyclin D1 and CDK4/6 complex promote phosphorylation of the retinoblastoma protein. This allows cell cycle progression and cell proliferation. Prolonged treatment exposure inhibits the protein and blocks cell cycle progression from one phase to the next. This leads to the aging of the cancer cells. I first read about it in a journal when I was looking for info here to get my master's degree. Then I came across a study that says that the course of the disease is positive when combined with hormone therapy.
My name is Sukhi, and I work in Breast Cancer Now’s Policy team.
Following on from Holly’s post below, I am looking to hear views from people from across the UK with experience of the drug treatment abemaciclib (Verzenios) with hormone therapy for treating hormone receptor positive, HER2 negative, node positive primary breast cancer after surgery
The treatment was approved for use on the NHS in England earlier this year, which is great news, and now the Scottish Medicines Consortium (SMC) is assessing whether it can be made available on the NHS in Scotland. We will be involved at every step to ensure eligible patients will be able to access this treatment and the first stage is submitting written evidence to the SMC. You can help shape our input into Scotland’s assessment of this treatment by sharing your experience. Any views will be shared anonymously with the SMC.
If you have experience of the treatment, please contact firstname.lastname@example.org by Monday 26 September 2022. You can choose how to share your experience and views, for example, you could answer a couple of questions over email, or we can arrange a short call at a time that suits you.
Hi @Nasus, hope you’re well and recovered from Covid.
Just thought I’d let you know how I’ve been getting on - however also noting that I’ve only done two full weeks now.
So far, not too bad. Two instances of dodgy tummy, quickly controlled with Imodium. Thankfully at home both times!
There’s an awful lot of gurgling going on and frankly, I’m full of wind..but it’s more slightly uncomfortable - like I’ve over indulged - rather than crampy. Bloods taken after one week were good, we’ll see how that goes - I have felt a little fatigued but that could the the combo of meds, going back to work and trying to start running again. On the plus side, sleeping like a baby…
Not as bad as I thought it might be. Early days but so far manageable. Fingers crossed it stays like that xx
Yes I was armed with Imodium melts which gave temporary relief between bouts and cramps. Hopefully you will have a stronger constitution than me and will sail through the dose. Everyone is different so I hope you’re okay on it. It’s certainly worth the teething troubles.
I’ve been warned that tummy troubles are the most common issue…deep joy…although interesting to note it wasn’t immediate for you. Did they give you stuff to counteract it, like Imodium?
I am comforted by the additional monitoring I’ll get and good to see they’re keeping a very close eye on you. I was also told it’s all about working out the right dose for me, I’ll keep you posted!
Sorry to hear you’ve got Covid, hope you’re not feeling too bad with it. Wishing you a speedy recovery.
Morning Nardine, I’m on the same Letrozole and Abemaciclib which is impossible to pronounce!
Well I expected the worse and not a lot happened until two weeks in and the diarrhoea started and didn’t stop. So I took a few days off to rest my stomach and started again. Blood test showed my kidneys were not working properly and they put that down to the diarrhoea.
Two weeks later, more diarrhoea and bloods showing kidneys not happy again so it was stopped for 10 days and the dosage reduced. All this was expected and a case of let’s see what dose works for me. I took the new dose for 24hours then tested positive for Covid so I was told to stop taking the tablets.
im still isolating and have Covid symptoms but by next week I’ll be back taking the lower dose of Abemaciclib.
So not that much to report and to be honest I was expecting so much worse than the side effects I had.
Please let me know how you get on with it.
Hi Susan, I hope you don’t mind me contacting you via this post - I’ve been trying to find others who are taking this drug. There doesn’t seem to be many for primary BC.
I’m due to start taking it on 10th January, alongside Letrozole - trying to be stoic/pragmatic about possible side effects but it does keep me awake sometimes.
How are you getting on?
Thanks for your message. Whilst we have submitted our patient organisation submission, that's only one part of the process and there is still plenty of other opportunities for us to highlight people's experience throughout the assessment of the drug so it's definitely not too late.
If you are happy to share your thoughts, please do get in touch by either this form https://breastcancernow.org/about-us/tell-us-your-story stating you are getting in touch about the NICE adjuvant abemaciclib process and we can then follow-up with you or by emailing email@example.com
Hello Holly sorry if this is too late but I just started this treatment 5 days ago. Happy to help if I can.
My name is Holly and I work in the Policy and Campaigns team at Breast Cancer Now.
I'm looking to hear from anyone who has experience of the treatment abemaciclib (also known as Verzenios) with hormone therapy as an adjuvant treatment for hormone receptor positive, HER2 negative, node positive primary breast cancer.
This treatment is currently being assessed to see whether it can be made available on the NHS and I want to hear your views on the drug to inform our work on this.
If you can help, please do get in touch at firstname.lastname@example.org by 24th October.