Hi Mels, sounds like you’ve had a few of the side effects, my randomly itchy hand seems to be better today but I am now starting to feel a bit tired at the start of week 3.
I had my day 14 blood tests on Monday and my white cells were also down below the normal range but still ok to keep taking the tablets atm. Do you know what level means you have to take a longer break in between cycles? I’m seeing the oncologist next week so will be asking him then too.
Hope the 2 week break helps with your blood levels.
Evening everyone
Meant to post last week to give some reassurance and not too worry when issues, things should hopefully settle.
I started Ribo in December 2024, all was fine until mid cycle 2 and my ALT (liver enzyme) started to climb. By end of Cycle 3, had to pause dosing as too high. Had several breaks and dose was eventually reduced to 200mg. My ALT pre next cycle is now sbout 40-50. That is still a little high but my liver now seems to be accepting Ribo! My white blood cell count and neutrophils were also normal (previously low).
I just wanted to let everyone know because it is worrying when there are issues and you don’t know if you are going to be able to restart. Just remember there are processes in place (trust your oncologist) and stick with it, hopefully things will settle. If not, then you are no worse off and you tried. We are fortunate that the drug is to prevent recurrence, not first line treatment.
@lola25 just fyi if neutrophils are below 1, they would pause dosing.
Hi thank you for your response. I haven’t had any itchiness as yet, but yes, I think I have had a few side effects.
It’s interesting that you have shown low white blood cells too, but I have no idea what my count was to prevent me carrying on taking Ribociclib… were you told your count?
I have to say that it actually scared me a bit, thinking that I could quietly go into sepsis simply because I’d touched raw meat cooking supper… hey ho!
I hope you carry on with this extraordinary treatment with few side effects and a long life. M xxxxx
Hi yes I ask for a print out of my blood tests each time, as my lfts have bounced around since surgery and I’m a bit paranoid about my blood count bcs of some family medical history. I’m hoping it all settles and becomes part of daily routine
Thank you, this is reassuring and good to know that 1 is the level for neutrophils. I was 3 so although lower than the 4-10 “normal” range on the results print out still ok to keep taking the tablets.
I’m taking a similar view that I’m lucky to be able to take it but if it doesnt work out for whatever reason then at least I’ve tried it.
Ooh good idea! I will ask on Monday if I can have my results. It would be interesting to see how levels alter throughout the process. Thanks for the suggestion! Sleep well! M xx
Evening this is the first forum I have joined. I wanted to say thank you to everyone as I am starting Ribo tonight and I am petrified of the possible side effects as I have just got my bounce back after 2 surgeries, chemo and radiotherapy. I hope they are not too strong. Stay strong everyone xx
Hi Bordercat - came on here to look for anyone who had been struggling with Ribo and ALT and there you are! I was on my second cycle and my ALT shot up to over 200 so I stopped taking it on the 2nd of September and it is, very slowly, coming back down. Still 66. How long has it taken you to get to this stage? Their current plan is for my ALT to normalise and then they are going to start me on full dose again to see what happens which seems absolute madness to me! Is that what they did to you? I just worry that, all the while they are faffing around, I am not on treatment and wonder whether to just say I’d rather just go on Abemaciclib, which was my other choice. I really only went on Ribo because my consultant wanted me to - I think because it is new to our circumstances they are keen to gather more data, which I completely understand. It’s such a shame because I had no side effects at all. Sorry - this is a bit rambly!! What I am asking is, how long did it take from the first time your ALT went haywire until you’ve reached this dosing schedule that seems to be working? And, as you are having two weekly gaps, will you stay on it for longer than three years, so you have had the full dose? Thanks xx
@birdie28 I am glad you found this. Sorry you are having ALT issues especially when feeling ok. I had hoped to reply before now but didn’t get the chance,p sorry. I am away this weekend so will add more info on Monday when I have my results in front of me.
My ALT started to climb mid cycle 2 but not high enough to stop dosing. However as time went on, got higher. Like you at one point over 200. I am glad they are waiting till things reduce for you, at one point I restarted but only just below the 105 at which they stop. I then had to pause again.
I have also reduced dose to 200mg. My oncologist said just as effective. This is due to metabolism and if slow or fast metabolism. If slow it takes longer to get rid of the drug but my understanding is that it means as effective as 400.
I think they try again because want just check still issues. It sounds mad but is sensible, I had high ALT with 200mg but last 2 cycles have been ok, so touch wood all ok and liver settling.
I started in December so taken a while to get things to this point.
I didn’t have a choice of drug as node negative but also didn’t want to take abemaciclib due to potential gut issues. I think I will be on it for more than 3 years but as taking Anastrazole for at least 5 years, not too bothered.
All the best and will add more specifics on Monday
Hey lovely - thanks for your reply - very helpful! I’ve been feeling quite rough for the last week - nauseous and I’ve had an upset tummy, and generally rubbish. I’m sure it’s just coincidence but all of this makes you so paranoid doesn’t it. I’m glad you seem to have found a way of taking it that seems to be working - long May it continue! I have a phone call on Tuesday but I’m assuming they’re just going to ask me to get another blood test done!!
Hope you have a lovely weekend and I’ll look forward to hearing how your bloods are shaping up xx
I’ve just taken the last 600mg of my first round of Ribo and I’m having issues like hayfever itchy eyes and a rash on my arm that comes up and down around my tattoo. I’ve just started an antihistamine hoping it will help. Mid cycle bloods were all good so I’m hoping all will be well before I start the next cycle. Apart from feeling so tired I could sleep 24/7 it’s the only side effect I’ve had so far so I will take that as an ok start.
Just wanted to see if anyone has an opinion on what time of day works best for them, I’ve been taking them in the morning and I feel wiped out a few hours later so wondering if I switch to evening next cycle things may improve?
Hi, I’ve been taking ribociclib in the evening as that’s when I was already taking letrozole. Also had itchy hand for about 10 days in cycle 1 and took antihistamines but it then stopped so I stopped the antihistamines and was fine for the rest of the cycle. Pre cycle 2 bloods tomorrow so keeping . Hope your fatigue lifts/is better in your week off.
Thanks. Hope you are feeling a bit better, they should prescribe you some anti nausea tablets. I got them at cycle 1 but not thereafter as didn’t need them.
Sorry for late reply but this is what my bloods were like (note 35 is highest normal range and above 105 they are likely to do something)
Mid cycle 2 and start cycle 3 above 35 but below 105
Then above 105 and so ended up having a few breaks during cycles 3-6, then restarted at lower dose and fingers crossed all stable now.
I didn’t drink much before starting ribociclib (max 5 units) but stopped drinking altogether after cycle 3. When I started on the new 5 week cycle, I had 1 small drink early within first week of dosing but other than that don’t have anything.
Hi
In my first few cycles I got itchy skin but resolved itself. The last 3 cycles I have had hayfever like symptoms in the third week if doing. Antihistamines help. Was lasting about a week but this cycle just a couple of days and didn’t need antihistamines. So hoping it will resolve as well.
Hi - Thanks so much for all that info. I’ve spoken to a consultant today who has explained that, as far as they are concerned in this instance, an ALT running anything up to 80 can be considered safe to continue the meds for the three years we have to be on it. So, mine is at 66 at the moment and he is happy for me to restart at 400 mg. I told him I’d been feeling rather unwell so I am not going to restart until next Monday, as I do actually feel better today (I don’t think it was the ALT - I think I’ve had a bit of a bug or something picked up on the plane on our way back from holiday!) but that seemed like a sensible idea. So, I’ll restart at 400 mg next Monday, have bloods checked in a couple of weeks and then follow up phone call with a newly appointed specialist nurse, so that all sounds like a very sensible plan. I spoke to him about alcohol (like you, I hardly drink these days) and he didn’t seem to think a moderate amount would cause a problem. So, we will see what happens next. He said about 6% of people they try on this drug won’t be able to tolerate it, no matter what they do, but hopefully you and I are not in that group!
Hi everyone. I’m halfway through my 2nd cycle. The first cycle was fine but this time around I’ve had a swollen, bloated stomach, bouts of diarrhea and constipation, and stomach pain. I’m seeing the pharmacist for a review and bloods tomorrow. I’m worried they’ll stop the medication when i tell them all this.
thank you for your response. I haven’t had any itchiness as yet, but yes, I think I have had a few side effects.
I will ask on Monday if I can have my results. It would be interesting to see how levels alter throughout the process. Thanks for the suggestion! Sleep well! M xx