Really interesting what your oncologist has said about the side effects being quite harsh. Mine has really down played them and assumed I’ll agree to ribociclib even though I’ve got big reservations about the impact on blood count and liver (as have close family history of bone marrow failure and my lfts have been bouncing round since I was diagnosed) after doing alot of reading into the research / trial results.
Am seeing a liver consultant tho to see if ribo would even be safe to take, which may make the decision academic. Then seeing the oncologist later this month.
Will also be reading the NICE guidance when it comes out in June as I have a few months still for a final decision.
I’ve had surgery, radiotherapy, started zoledronic acid and am on letrozole for 10 years, no chemo needed, so feel I’m throwing alot at it and everything I could at this point if I was on the NHS not Bupa. Doing lots of exercise which research also says brings a big reduction in recurrence risk and for me feels good for my whole.body rather than another strong drug for 3 years.
Everyone’s different and obviously I’m lucky to have the choice about ribociclib. Hope you settle on the best treatment for you.
@lola25 A complex decision for you, hopefully the visit to the liver specialist will help.
So, I restarted on the 200mg dose after 4 week break due to high ALT. I felt ok during this 4th cycle so was surprised to find my pre cycle 5 ALT was slightly higher than it was when on the 400mg dose.
So another break and my oncologist working out where to go next!
High ALT is annoying but other than feeling tired, been more or less asymptomatic. Not good long term so hopefully can get things resolved.
Hi all, sorry for being silent - I have been on holiday and travelling for work a lot more which has been lovely but full on!
I am just starting cycle 5 and while my WBC and neuts are a little up and down my liver function has held well so far. I also feel my side effects have levelled off a bit and I feel like I have got more energy back
In ref to an earlier question about how to decide whether to go on Ribo I’m in the no brainer category of giving it a go. I had a grade 3 34mm cancer last year - chemo (lots) then surgery followed by radio and was high risk of recurrence so for me the combination of Letrozole and Ribociclib and the impact on lower recurrence risk was something I just had to try.
Sorry to hear some of you are still having struggles with liver function - I hope you can get it resolved so that you can continue.
