help please. I was diagnosed with bone mets early this year (after NED 10 years while on letrozole!). Denosumab and exemestane have done a bit of good for the bones, but now more lymph nodes involved actively. Eek. So I will be starting ribociclib soon. Head spinning in shock. Looking for positive experiences and how to deal with side effects. And general comforting support messages. I have no symptoms of cancer, it was a CT scan that got the secondary breast cancer meds started. Out of the blue.
Hi Christine, I am on pablociclib/ letrozole/ denosumab; not quite the same but the same family of meds. I have found it really manageable and live pretty normally tbh. It has also shrunk my mets, which chemo didn’t do!
This is a relatively quiet forum, so I thought it was better to have similar experience rather than no reply!
mary
Hi Christine
I am on my 22nd cycle of Ribociclib letrozole and Zoladex, I was diagnosed straight to secondary have a patch on pelvis and lymph node involvement.
I responded so well to ribociclib that I had a mastectomy last July originally they said they couldn’t operate, I had a complete pathological response. The patch on pelvis remains the same so they now are saying it might not be related.
i don’t suffer any side effects, my neutrophils were low on Monday so I’m having a week of treatment which I don’t think is to bad as I’ve never had it delayed and on cycle 22.
Let me know how you get on with it
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Hello Christine, I realise I’m replying to quite an old post but I have just discovered this forum !
I too have bone mets and was diagnosed in 2022 after many months of pain in my hip and back I couldn’t control! I kept getting sent home from GP and hospital as sciatica. It was incredibly tough mentally and I developed anxiety as I wouldn’t go out much due to fear of a pain outbreak happening when I was alone or with my six year old. The pain would come on so suddenly and so much I was unable to speak through it.
after many trips to A&E for morphine and an MRI later, I was diagnosed with a spread to lungs, liver, bones and breast…
I am in my third month of ribociclib now and I take an anti sickness with it and I have no side effect! A tiny bit of nausea half an hour after taking it but that’s it! My pain outbursts are rare now too.
I am also on anastrozole, denosonab and zoladex.
how are you getting on with your treatment ?
L X
Hi Christine
Sorry to hear about the mets… me too I have secondary bone mets and started ribociclib in march 23 and my bloods are taken every month by a nurse who comes to my house which I prefer. First three months my heart and blood pressure were monitored and I was fine.
I do get a bit tired so I take mine after food in the evening. Noticed constipation so eat prunes daily and this has helped and told by nurse to drink 2.5 litres of water/ fluids a day. I also occasionally take an anti sickness pill if I need it.
My skin is a bit itchy so use soothing cream and take a anti histamine if it’s annoying me. I have accepted that at this point I have to go for treatments available including those that help with the mild side effects. I want to live as long as possible!!
Hopefully you have started your treatment and doing well, take care
Good news that my cancer levels dropped from 140 to 80 in three months so for me the treatment is working and my pelvic pain improved. I have ct scan and Consultant appointment every three months and will probably start on bone infusions this year too.
Hi ladies.
Started with the Ribociclib mid Dec 22.
Bloods checked monthly and I had issues with low neutrophils initially. On reduced dose now and they seem to have settled.
Other than that a bit of mild constipation and a permanent sniffle especially if I have been in the garden.
I agree drink lots of water and eat as much fresh fruit and veg as you can.
Could anyone comment on their experiences on ribociclib or Abemaciclib? I am due to start one of them in a month.
Thank you in advance!
Hi. I’ve nearly completed 2 cycles of Ribociclib - with letrozole, Adcal D3 and Denusomab. For me - all good and manageable. I’ve been more tired / fatigued, and get constipated for the 21 days (so drink lots of water, eat fruit) I take the Ribociclib in the morning and make sure have breakfast soon afterwards (to avoid nausea) and take the other meds at night (to reduce letrozole side effects). Overall all good and glad to be working out ok so far. Will be scanned after 3 cycles and am hopping it’s all working 
good luck x
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I’m about to start 3rd cycle of Ribo. My worst issue so far is getting bloating and UTIs but that could be because of my other drugs. I also get constipation which was quite bad. I felt sick the first week I took it, but that improved. I also had awful headaches.
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Thank you for this information. Hope you are feeling better! All best to you in good health.
Thank you for this information! Im glad it’s working out for you. Thank you for the tips!.
All best and good health to you!
I started Ricociclib in July 2023 after a stage four diagnosis found initial breast cancer had spread to my lungs. I didn’t really notice any side effects to start. But in the December I caught Covid, and constantly felt like I had a cold or cough so after contacting the Christie hotline in late January of 2024 I was asked to go to hospital. Various tests identified Pneumonitis, so I was placed on antibiotics, anti virals anti fungal meds alongside steroids. It was then stated that the Ricociclib had caused the condition and inflammation. Sadly its use was discontinued and a few weeks later when healed, I started Abemaciclib. I did get pneumonia with this in April, but tests showed it had not caused by it, so after a period of healing I restarted it on reduced does as it had caused hives in my hands.
My breathing still feels short of breath, and I get tired quickly but apparently it’s not the new targeted drug.
Regards
D
I’m on ribociclib and have just started my 3rd cycle. I was fine for the first 2 but seem to be having excessive fatigue and feeling weird headed this time although that could be because I am currently on a course of steroids and they also make me feel weird and jittery. I’m keeping a diary of how I am everyday so I can discuss it at my next appointment. I’ve also had a horrid ‘lurgy’ which I was convinced was covid but tests were negative. I’m currently taking 3 tablets as day which I take after breakfast. I do find that they make me feel a bit bilious for about 40 minutes after taking them.