I’ll be starting on Verzenios (abemaciclib) next month. I’d be really grateful if anyone taking it could share their experience of side effects - thanks!
Hi, I totally agree, I am still trying to come to terms with being told I am high risk, was in shock for days...... it took my Team 6 MTHS to tell me & then it was me joining the dots, I think between the surgeon & oncologist they dropped the ball & thought I knew ! I will be working with a cancer psychologist to help me get into a mind set to live a normal life without constantly worrying
The drugs are a bonus but do keep you trapped in the world of hospitals & cancer treatment
It can be hard to stay positive after all we have been through but we have to think that most women don't get a reoccurrence. In the trails for the drug the high risk group went from 89 % to 92 % no reoccurrence in 2 years, even though labelled 'high risk ' so that's still good odds.
Plus it says women had chemo and/or radiotherapy in the trials so if you've had both that must be an advantage
I was never told I was high risk by anyone but worked it out myself and have badgered them since I heard about this drug. I will try everything there is as my cancer was huge and most of it was hidden from mammogram and ultrasound scan in dense breast tissue x
I had a low oncotype test score & no chemo, so thought the risk was low, I wasn't told tumor size was an issue too. 10cm, like you very well hidden, which still amazes me.
I have been on this for about 6 weeks, also just finishing 15 rounds of radiotherapy. I have had and still having diarrhea but take Imodium which helps. I have been working around appointments and coping. Sleep is not great but again coping! I have fortnightly blood tests with regular calls from my care team. If I can be of anymore help let me know
C&VUHB. No I have not started any Hormone meds yet as I have been told that this will happen after the 15 sessions of Radiotherapy which start later this week. Yes I have gone through the menopause last year. I am going to email my Consultant today to seek more clarity on timelines. I am high risk and fit the criteria for Abemaciclib. I am really sorry you have been chasing this for so long. So have you actually now been given a date when you will start on this drug?
hi I've been told to get dental check up as this drug can cause jaw issues, trouble is my regular dentist nearest appt is ......May 2023!!!! I have called and begged and they have now moved to end of October. so stressy. Guess I will prob need dental work as haven't been for ages, hoping won't delay getting started. also I know we have to have regular blood tests , think onco said every two weeks for 2 months, then it gets less often , i know this is going to be a nightmare trying to book in at my gp and I live long distance from hospital....wonder if all trusts are advising the same for blood tests? my next onco face to face appt is 10 Oct. hopefully more clarity then
Hi all. I think I may be asking a daft question after reading this thread, but has anyone been offered this but decided against it because of the side effects? I’m on the fence and going round in circles. I’ve had a lumpectomy, chemo and currently coming to the end if radio.
My oncologist did my predict score with me and it’s around 11. The score for this new drug isn’t known yet but he guessed it would be around 5 or maybe 6 which would bring me down to around 5 or 6.
I don’t like the idea of remaining immune compromised for a further 2 years nor some of the more common side effects, not diarrhoea particularly more the potentially life threatening ones. Could be swapping one life threading illness with another?
I’m thinking I am currently around 11%. Chance of recurrence but if there is more than a 1 in 10 chance of side effects which include potential life threatening ones then I’m not sure my odds improve overall?
It could be I have this all wrong and I should jump at the chance to take it. Did anyone else worry before deciding?
I took it for the first month side effects not too bad but my white cells dropped off. Onco said this was unusual. ? I'm having a break then going back on it at a lower dose . They do monitor your bloods every two weeks at first then less often when you've been on it a while
I know what you mean I don't want to be immunocompromised either but having had my first follow up mammogram today I wound up sufficiently to go back on it.
Maybe give it a try you could always stop it if you find the side effects are too much.
