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
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.
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.
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?
Hi everybody out there on Ribociclib & Letrozole??
How are you all managing on this medication?
I’ve been on Letrozole for 11 months & Ribociclib for about 7/8 months. I’ve just this week had to take a break because of the mental exhaustion, brain fog it’s causing me. All’s I’m doing is going to bed curling up into a ball & sleeping. I can’t seem to think straight any more my brain is really struggling. I also think depression has started sadly hence I’ve had to start on Sertraline 50mg.
Please if anyone on these strong medications has any helpful advice on how to cope with these debilitating side effects please let me know
Sorry to hear that. Can they reduce your dose? I know it’s a viscous circle, but are you getting enough exercise as I find that really boosts me but I know it’s tricky if you’re not feeling awake enough.
After seeing a nurse last week when I was picking up meds & having my Denosumab injection I ended up having a meltdown while talking to her. I just felt so upset & emotional & couldn’t bottle it up any longer unfortunately.
She took my blood pressure, temperature etc & all were fine along with my blood results. However it turned out that my meds & bloods were out of sync. I’d been called too early for bloods as it should have been the following week when I was on my 7 day break from Ribociclib.
It was decided after speaking with my clinical nurse to have a 1 week break from both Letrozole & Ribociclib.
She’ll speak with my Oncologist about reducing the dosage from 600mg to maybe 400mg.
So I’ve been & had bloods done again today & I’ll get results tomorrow & I’ll find out what my Oncologist decided on maybe reducing the dosage.
I’ve been unwell all week with a heavy cold which has now gone into sinusitis most unpleasant. The pain & pressure in my face is horrible.
So I may not be able to restart my meds tomorrow & have to wait until I’m feeling well again which will hopefully be very soon
I’m glad you’ve seen someone and at least talked it all through. Sometimes when I have a cold my neutrophil levels are actually high as they’re fighting off the cold. Let’s hope you start feeling better ASAP as it sounds like you’re having a rough time of it.x
Hi tibblek I actually ended up coming down with a really heavy cold which then went into sinusitis. I’ve had an awful time of it these last couple of weeks. I’ve never had that facial & head pain before & hopefully never have it again. I’ll finish my antibiotics tomorrow & then go back on Ribociclib in a day or so but on the reduced dose 400mg.
I’m feeling a bit more myself today finally just a pity I have to go back on the Ribociclib but thems the breaks as they say.
most unpleasant. The pain & pressure in my face is horrible.