Hi there ? 
I feel like I ask too many questions on this forum, I don’t want to clog it with questions, but it’s the only place I know to draw information from others personal experiences!!
My mum is taking Ribociclib (since Sept) and this is the 2nd time in 3 months they have stopped it due to low platelets/ low blood count. I got reading the list of side effects and it actually scared me that my mum is taking this stuff at all…
Who else is on Ribociclib? How long have you taken it for? Any problems or success stories please ? My mum also takes Letrozole and Denosumab. Thank you !!!
Wishing everyone a safe and peaceful holidays!! Xx
Hi SecondarySister2,
Hopefully someone will come forward soon with their own experience of Ribociclib. You can enter the word next to the magnifying glass icon which is to the right of ‘This board’ and see previous posts on Ribociclib.
I have been on Palbociclib which is in the same ‘family’ of meds as Ribociclib. Re the side effects, it is a scary and daunting list of side effects but on a previous post, someone wisely said that for aspirin or paracetamol, over the counter tablets, there’s a list of side effects.
I’ve been on Palbociclib for a year now and have had my treatment delayed by an extra week for at least a third of my cycles due to low blood count. It is a side effect of the treatment and just seems to affect some people more than others. My oncologist is pleased with my CT results which have all come back as ‘stable’ and he’s told me that my cancer makers are now within normal range.
I do hope that your mum is able to continue with Ribociclib and she also gets encouraging scan results.
Best wishes.
XXX
Hi, I was started on Ribociclib in September 2019 but had to stop due to vomiting and low bloods after three weeks. I was switched to Abemaciclib, the same family of drugs, and have had not problems apart from stomach upsets which are standard on this drug and have been stable since. They are powerful drugs and the list of side effects terrified me but all drugs have side effects. I am on Fulvestrant and denosumab as well. Hope things settle down for you mum and wishing you all the best for the New Year.
Hi there
im also on ribociclib, letrozole and zoladex, I’ve just started my 4th round, my neuts have been low the past 2 round but oncologist happy for me to proceed as long as they are above 1, last ones were 1.3 she has reassured me not to worry and if they were to be below 1 which they havent yet she would reduce dose from 600mg to 400mg. I don’t have any side effects other than hot flushes got my 1st scan next week since starting treatment and I will be honest I’m so scared. Just hoping and praying medication is working.
Hi Secondarysister2, I’ve been on ribociclib for a year now and have been mostly ok, I haven’t had to stop it unlike your poor mum. I’m also on Letrozole but not Donosumab. So very sorry to hear of her horrible side effects, I think with all these drugs there’s always side effects, so do hope she recovers from the low platelets/low blood count. One question, is she on a trial?
Sending hugs to her and you xx