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.
Hi
I’m on cycle 4 and WBC and neutrophils back within range. Liver function has throughout been fine.
One side effect (but could be Letrozole) is the impact on my hair. I’ve lost lots of eyelashes and eyebrow hair. My hair has also gone very soft and frizzy (could just be the effects of chemo)
By day 21 the fatigue is at its worst and then I have a lovely week off. My favourite time of the month.
Onwards and upwards. Hope you’re all managing well - 2 2/3 years to go
x
Hi, I’ve just finished my second week and had the first bloods/ECG. Neutrophils were 1.6 (is this low? the nurse just said its ok). Also she called later to say the kidney bloods were high, was I drinking enough? Just wondering if anyone has any advice on how much to be drinking on this (& Letrozole) and if there is a way to increase the neutrophil count? Thanks for your wisdom !
1.6 is out of normal range but to be expected given what your body is going through - this is the most frequent side effect. They should recover on your week off.
My lowest was after cycle 2 at 1.7 but they’ve gone back up. Might also be because you’ve had an infection without knowing it. I really wouldn’t worry unless it stays like this for a few weeks. Your medical team knows best.
I had the same concern when I was on chemo and googled like crazy to find out how to improve (one anecdotal piece of research said dark chocolate before blood tests!). There is no magic bullet except to eat a balanced diet, lots of fibre and plants for healthy gut (immunity) and of course drink lots of water. I try to get a variety of at least 15 different plants a day (not portions!) I find I am drinking a lot more water on Ribociclib.
I don’t take any supplements except an a - z multivitamin recommended by the clinic. Some studies have “claimed” that too many can increase recurrence (!) I therefore try to get as much from my diet as possible. That’s my life for the next few years. Oh and little alcohol (wish I could say none but that’s asking a bit too much)
Thanks so much for the reply, that all makes sense. Maybe I need to up my water intake anyway to help the kidney’s cope. My diet is very good, mainly plant based, fibre, olive oil, etc etc.
Like you - wiping alcohol out entirely isnt going to happen, I will only really have a small glass of red on the rare occasion but I very much savour it!!
I’m slightly concerned this has happened after only 2 weeks in cycle 1 but lets see how this goes.
@jbb sorry to hear about the fatigue and hair loss. @glimmers not sure about how much water to drink but as @jbb says don’t worry too much about the neutrophils. I started ribo in December and after 2 weeks my neutrophils dropped to 1.2 . I didn’t have chemo, so ‘odd’ bloods was a new thing for me. It is expected though and my understanding that they only bother if drop below 1. I had a cold in December and no worse than normal, despite low neutrophils. For the first 3 cycles they recovered a little on the rest week but were never in normal range (always below 2).
I have had ALT (liver enzyme )issues, so lots of breaks and have had 1 cycle at lower 200mg dose but ALTs still too high to restart. Fortunately not causing any major side effects. So only had 4 cycles total. With the extended breaks neutrophils have recovered. Anyway they have a plan so hopefully back on it soon.
Agree re wine, with my high ALT, stopped drinking altogether (like you both only had the odd highly savoured drink!). So since March, been alcohol free apart from 1 week. When things settle, that next glass of red is going to taste very good.!!
@Binturong Welcome. I see post is deleted, not sure if you got an answer. I think you were asking about node negative and ribo. Yes, ribociclib is a game changer as it is the only one of the 3 CDK4 4/6 inhibitors (palbociclib, Abemaciclib and ribo) that the clinical trial included node negative patients that were intermediate risk (grade 3) Like you I was grade 3, oncotype was 18 and so no chemo. Had 2 tumours removed (no mastectomy). It is currently available privately but anticipate it getting NHS approval in June. However, initially I think the initial approval is only in node positive patients which is frustrating, as the other 2 can be used for node positive. I know BCN have raised concerns and the benefit for node negative patients, so hopefully things change.
All the best.
@bordercat Thank you so much for writing back. I realised after posting that you and others and already discussed similar details in this thread. It has been very helpful. I will be seeing the oncologist in a few weeks and will report back if I hear anything new about ribociclib availability.
Just adding to this one: I had two positive nodes (neoadjuvant chemo destroyed the cancer) but I pushed to have Ribociclib rather than Abemaciclib due to potential side effects. It was a choice between diarrhoea and huge impact on QOL vs immunity, liver and heart issues.
Supposedly no difference re chances of recurrence.
QOL was crucial for me otherwise what is the point of going through all this treatment. I was lucky to have this option
@bordercat Thanks for the info, its helps so much to hear from people further down the line - even though I understand all our experiences can be different! (except for the wine, we seem to be in the same boat on that one )
@jbb I’m sorry you’re experiencing the hair loss, can I ask when you started noticing it? Have you lost alot of head hair? I’m also on Letrozole so, as you say, could also be that. @Binturong I hope the appointment with the oncologist goes well for you - fingers crossed the Ribo will be authorised for a wider use.
@jbb Absolutely QOL important. Hope no offence caused by my post. I was just saying no options for node negative, not that ribo shouldn’t be first choice for node positive. I think Abemaciclib would be a hard one to ‘live with’
Oh gosh no offence whatsoever - was just explaining that slightly different for me at to why I have Ribo rather than Abema So far so good and hoping it stays that way.
Re hair loss possibly a chemo thing - eyebrows and eyelashes all grew back at once and maybe now on their regular cycle so more noticeably sparse. Also eyebrows now completely grey - before BC would have the v occasional light grey hair. Eyelashes also very light colour. Who know what’s caused it.
Hair on my head - after cold cap and chemo has grown back really full but very fine and grey curls (even with cold cap). Looks like I’ve had a perm. Used to grow v quickly before BC and I expected the same this time around or maybe I just check it more so it seems slower. Pre BC I had shoulder length hair and lots of it.
I think I’m settling into Letrozole - my joints have been much better lately or could be because I changed brands. Still stiff but not as bad. I try to walk average of 10k steps a day plus swimming and I think that’s helping
Hi I am on 600mg Ribociclib and Exemastane and Denosumab. My neutraphils sometime go below 1 but mainly stay at 1.2. My hair is definately thinning including eyelashes and eyebrows. I am only on 6th cycle of Ribo.
Thanks for that, I didnt have chemo (this time around) so hopefully it will just be thinning. I did have chemo over 22 years ago with a triple negative BC, lost all my hair and it came back super curly - after about a year is went back to how it was before. Well done with keeping up the steps - its on my “to do” list and I know it will be helpful so I need to make time for it.
I’m on 2 x 200g Ribociclib a day - since the beginning.
Thanks for all your comments on hair. It’s so important to all of us and our image. It is like watching paint dry I finished chemo in Sept 2024. I have decided to stop having the curls cut off and see what happens. Part of my hair feels almost normal and the other on top (the most noticeable obviously) like baby curls. Arghhh
PS just read that the NICE recommendation on using Ribociclib for primary BC doesn’t come till August. Is this right? So unfair for many women who could miss out
Some good news coming out of the ASCO meet up in the US. Latest update from the NATALEE trial (close to the four year marker) shows good reduction in recurrence when taking Ribociclib and an AI compared with taking an AI only. That said it doesn’t seem to make as much of a difference as exercise does
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