Morning everyone! I’m just about to start Ribociclib as targeted therapy for primary breast cancer under its’ recently approved license. Just thought it might be nice to chat with anyone else who might be in the same boat. Taking my first tablet this morning and, after all the dire warnings from the nurses at my appointment recently, I am fully expecting to turn green, my head start spinning round and to be talking in tongues by teatime!!! I’ll keep you posted!!! Be lovely to hear from anyone else on it for adjuvant therapy in primary breast cancer xx
Hi Birdie, I have also started this morning. I also had my first Zolodronic acid infusion yesterday (with zoladex) and I barely slept last night. Awful tummy pain and pain all over. But as I say, that was the Zolodronic acid. Hoping Ribociclib is kinder to me.
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There is a lot of good info/chat on a ribo chat that was started in December 2024 (still active). It is in the latest list as well as chat with the recent approval.
I have had 4 zolendronic acid infusions. With the first I did get a lot of aches, the second not so many and all good with 3rd and 4th, so hopefully eases for you.
All the best
Oh, we are Ribo twinnies!!! I’ve got my first Zoledronate on the 20th - hope it’s kinder to me - you poor thing!!! I felt a bit sick for a while yesterday but I’ve been right as rain today. Hope you’re ok now xx
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Can I just ask if you were previously on a hormone blocker? I have just been told I do not qualify as I started Letrozole just over a year ago, prior to surgery, chemo & RT. When it was prescribed privately, my understanding was it had to be less than a year from the LAST treatment which in my case would be RT in Feb this year. I just can’t find anything on timing despite many a search! Certainly nothing in NICE.
Hi - so my timeline is started AI in February but had a five week break because Letrozole and I did not get on! Restarted on Exemestane in June, finished RT end of May. I believe it has to be prescribed within 12 weeks of last treatment, as you say. My treatment has been rather protracted, starting in June last year, so I struggle to understand why the 12 week thing is so crucial really but I guess they have to make some decisions about cut offs etc. Were you offered Abemaciclib, cos it’s the same for that one - 12 weeks from last treatment. I have my first bloods tomorrow so be interesting to see how they are cos I’m feeling absolutely fine so far!
12 weeks then not 12 months?
No I wasn’t prescribed Abemaciclib as didn’t qualify - node negative. I’m now on Camizestrant on the Cambria 2 trial & would have to come off that for Ribociclib. My cons said she’d prefer me to stay on Camizestrant which is fine by me.
BW
Yes, definitely twelve weeks
Hi there
Where is the 12 week guidance?
My onco told me 12 months
So now I’m confused
X
I finished radiotherapy in early March and started Ribociclib (through BUPA) 2 weeks ago. I had to start zoladex, then letrozole and then Ribociclib. So in my experience 12 weeks definitely isn’t a cut off. Maybe its different under the NHS approval but I thought it was 12 months. Something to discuss with your oncologist x
12 months for Ribociclib. 12 weeks/ 3 months is for Abemaciclib.
The other thread is good on this guidance
How are you all getting on with Ribo? I’m starting it later this month. I’m about 16 weeks since radiotherapy. My chemo finished last december. X
Hi - so I’m just coming up to the end of the first cycle. My neutrophils are low (they were low before I even started) and my kidney function is weird - the doctor explained it to me saying that Ribociclib causes pseudo AKI (acute kidney injury) meaning that the bloods show that you have AKI but you don’t - it is just a glitch in how they measure certain levels! Sounds all rather alarming but I am assuming that I am ok, as the doctor said it was nothing to worry about. In terms of side effects, I have none and feel really rather ok. It is the Exemestane that causes me more problems, with achy feet, but nothing like as bad as Letrozole was for me.
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I was definitely told 12 weeks, same as Abemaciclib!!
I have my last dose on cycle 1 tomorrow morning and my review with the oncologist in the afternoon to get the results of last weeks ecg and blood test. But I think ive been ok on Ribociclib. X
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Just pipping into this
I’m going to recheck as I was told 12 months
My 12 m is up 14 Nov which is why I’m mtg with my onco late Aug to discuss when it will actually be allowed to be prescribed
Will let you know what they say after my appt x
Hi All
Just noticed that people are being referred to this new chat.
However as we’ve had another going for about a year on the same topic it seems sad and pointless to start a new one as so much useful information is on the other site and questions answered and experience explained.
Happy to answer any questions on the other chat so it’s all in one place.
x
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