@sammy75@lola25 thank you for sharing. I think I am in a very similar boat to you and it helps to read your experiences.
Sharing my story in case you/others find it helpful for comparison too: Stage 2, 43mm Grade 2 Invasive ductal carcinoma Er8/8 Pr8/8 Her 2: Low, premenopausal (37yo). 3 nodes positive. It was in both breasts (although the right side was stage 1 and grade one and very small and no node involvement there).
Had two ops: first one was a bilateral therapeutic mammoplasty and the second was lymphnode clearance and to clear further margins. I do have private healthcare so that gave me the option to do the oncotype test.
This week my Oncotype test came back as 11 so only 4% change of distant recurrence in 5 years (such a relief). Have been given the treatment options of: radio+hormone+chemo OR radio+hormone+ribociclibā¦.. so I have a decision to make.
The benefits of chemo (in my case potentially only 2% and the report says it isnāt certain if this is from the chemo or the artificial menopause) do not seem to outweigh the risk of serious side effects (specifically the infertility as we donāt have kids yet); but I am unclear about the added benefits of ribociclib. Especially as the distant recurrence risk is āonlyā 4%. Will ask my onc about that but wondering if youāve been given any stats?
@fj8 no onco score but went through survival rates mine is 90% over 10 years if i have cdk takes it to 94%. I am grade 1 stage 2 and all cancer removed with clear margins including removing all lymph nodes as 2 were postive.
Im.not. coping with chemo hence unsure about cdk. But i have to stop thinking so far ahead
Iām so sorry to hear that. Hopefully switching to this medication will help alleviate that. From reading everyoneās comments and from what I understand from the oncologist the side effects are less severe. He did say they would monitor me with blood tests and ECGs so hopefully thatās the same for you?
@fj8 i am staying on chemo as would rather try and suck it up for 4 months than do 3 years but I might habe tondo it anyway. Habe you startes in cdk? Ifnyou dont ming me asking xx
Thank you for also saying that the oncotype test includes a distant recurrence over 5 years risk - I had no idea the test gives that as well so will be asking what my score was there, as well as the 16 out of 100 score.
Hope your treatment goes well, whichever route you decide.
I totally get that. No I havenāt started yet. This is what Iām currently weighing up. If the benefit for each is roughly the same percentage wise (this is what I want to triple check) and the side effects for both are nasty, is it better to grit my teeth for four months rather than 3 yearsā¦? Though from reading through the stories Chemo seems a lot worse and the likelihood of infertility is probably going to swing it for me. Iām currently going through the process of freezing my eggs but have also found out my reserves are pretty low.
Iām sorry that youāre struggling with the chemo. It is really hard, but eventually comes to an end. Ribo really is no big deal in comparison.
I had chemo Aug-Dec 24, when ribociclib wasnāt even licenced for early breast cancer. I found out about it after completing my radiotherapy, just as I was preparing to return to work. I was very keen to take it as the reduction in recurrence is significant. For example if your survival goes from 90% to 94%, thatās a 40% reduction in risk of death -from 10% risk of death to 6%.
These calculations are done using mathematical models and for me personally, I wanted to do absolutely everything I could to avoid future metastatic disease. My Mum had a low risk tumour and wasnāt offered chemo, she then had liver and bone mets discovered 12 years later and went on to die of breast cancer, 15 years after her original diagnosis. That experience has definitely influenced my decisions.
I suspect in future people like me who were borderline for chemo (1 lymph node involved, grade 2, but relatively large tumour-4cm) might only be offered ribo, not chemo + ribo. I am very glad to have been able to have both.
I have just completed cycle 7, initially my bloods were ok. Iāve been working three days a week since cycle 3, and am tired towards the end of each cycle, but itās manageable. its absolutely nothing like chemo! I had to have a 2 week gap prior to the most recent cycle due to low neutrophils, and now another longer break with low neutrophils and slightly raised LFTs. I suspect I am going to end up on the 200mg dose.
Just try and take it all one step at a time, one chemo cycle at a time. Chemo really does take all your physical and emotional strength, and the next steps will become clear once youāve got through it.
@imb thank you. I need to work full time and work at a football stadium so surrounded by 1000s of people. I suppose i need to take a step at a time as it worries me that I cant be tired all the time. 90% was over 10 years and all my cancer has been removed by surgery
After two weeks off ribo my ALT has gone from 91 (a week after finishing cycle 7) to 144. My neutrophil count came up nicely in the same period.
Iām not sure why it would continue to rise without me being on ribo. Iām wondering if itās the letrozole that Iām also on. I had got through 6 cycles with no issues. Iām waiting for a call today from the oncology pharmacist that is managing all this for me.
Sorry for the late reply. Iām in a similar boat. ALT was 117 so treatment halted. Over 10 days with no Ribociclib itās gone up to 242. Why??? Iāve got my next bloodtest on Thursday and just hoping it will have vome down. Have you had any update since your post? X
I had a call from the pharmacist, there was some further discussion and I restarted Ribociclib at 200mg instead of 400mg. This was because although my ALT was up, it was less than the ā3x upper limit of normalā which is a cut off they use. In theory I could have started back on 400mg, but because Iāve had also two pauses due to neutropenia that seemed the best decision.
I have more bloods in a week, after 12 more days of ribo. Fingers crossed!
@agathac@imb Sorry for the late reply. I had a similar thing. At my pre cycle 4 bloods it was 189. I then had a 2 week break and it went to 203!. After a further 2 weeks, I changed to the 200mg dose and at my next pre cycle bloods it was 218, so higher than it had been on the 400mg dose!
I then had to have a 4 week break and this got my ALT down to 41, so only just outside normal. A few blips since then, but from Cycle 9 it has been in the normal range. I have just finished cycle 13 and now have bloods after every 2 cycles
So @imb donāt worry if your next bloods do something similar. Hopefully, will settle down with time.
Hi @sammy75 Iāve just been catching up with all the messages but wanted to reply. Iāve just finished my first cycle of Ribociclib. I had grade 2 breast cancer with 3/29 lymph nodes involved. So I had lumpectomy, full node clearance, and then 6 cycles of chemo (EC-D) which finished Feb 2025. In Dec I unexpectedly got an appointment with the oncologist which turned out to be them offering me Ribociclib as funding had just been approved for Northern Ireland. From what I understand, the benefit isnāt huge, but I decided to give it a try cos what if I was one of those few people per 100 whoād otherwise have had a recurrence? Chemo was no walk in the park but Iād say it wasnāt as bad as I thought it mightāve been. I had no real sickness but I did have fatigue and the pains with the Docetaxel were pretty awful, but I got through it. Iāve only had one cycle of Ribociclib so maybe things will change, but so far Iāve not noticed any side effects except a little tiredness at the end of week 3. Itās different for me than you though, as I had a break of 11 months after my last chemo and had got back to a relatively normal life. They told me Ribociclib would have to be started within 12 months of finishing other treatment so maybe you could take some time to think about it and to allow your body to recover after chemo?
Hopefully switching to this medication will help alleviate that. From reading everyoneās comments and from what I understand from the oncologist the side effects are less severe. He did say they would monitor me with blood tests and ECGs so hopefully thatās the same for you?
