Hi lovely people on this forum. I was diagnosed with mets 2 months ago and had started on letrozole and first round of ribociclib. I was due to start back on the ribo 10 days ago but my neutrophils were too low. Had a 2nd blood test yesterday and the neutrophils are still to low, so cannot go back on ribo for another week.
This is worrying me!! I can't find any research on line that really talks about the consequences of delaying the next cycle. Has anyone had this explained or found good research?
Best wishes to everyone.
Hi Sea Ranger
I hope your bloods recover for your next cycle.
I went through something similar with ribociclib and my platelets. I had lots of breaks and could only tolerate 6 cycles over 9 months. That was nearly 4 tears ago.
I hope this gives you some reassurance and have my fingers crossed for you.
X
Hi Sea Ranger. I think many of us have low neutrophils with Ribociclib and I used to be anxious every time my bloods were taken. I started my treatment last October, 600mg a day. Problem from the start and my second cycle was delayed by a week....like you, I was concerned. My dose was then reduced to 400mg but I still had low neutrophils. I was able to continue even though my level was 0.9......my doctor said she wanted me to have continuity so my dose was reduced again to 200mg which she assured me is effective. I am feeling much better on this lower dose and my bloods are good. My scan last month was stable so I am in a much better place mentally than those first anxious months....you will settle in to a routine that suits you. Good luck.
.
Hi Bamboozled. I really appreciate your reply. It's reassuring to hear from someone who also has experienced this and is doing well.
It feels much more lonely this time around, when you don't 'look' like you have cancer. Not that I want to, but stage 4 seems like a secrete society!!!
Thanks again for your kindness.
X
Hi Scouslass.
Thanks for replying, I really appreciate it. Your experience is giving me encouragement and lifting my spirits, so thank you. I feel its a lonely place at the moment, trying to be optimistic for my hubby and adult kids, so I'm going to a local cancer support house next week to get support for myself.
Thanks again, most helpful.
X
Hi Sea ranger I’m on round 6 of ribociclib and my count is 2.4 so don’t think that’s too low my liver enzymes have shot up but Consultant said I could carry on with treatment. I read an American article from this year that was saying outcomes are still positive even if dosage is reduced to one 200 tablet so I think a break in treatment or low dose will still help you. I have bone mets discovered 10 months ago. I was relieved by the medical paper as I was worried that if I can’t continue treatment or lowered dose may make things worse but other replies I have read here always make me feel hopeful of the future.
stage 4 is like living on another planet half the time! Keep on keeping on and take care
So pleased to hear you say stage 4 was like liking on another planet. I so agree with you. My 5 th ribociclip cycle has been delayed for a week because I had a very itchy rash after my scan. Good to hear others have been delayed & to get reassurances that it’s still effective. I have mets in my lungs.
Sorry to hear about your lungs, hope the rash clears up and you can get back on track,
take care
Hi
I started on Ribociclib six weeks ago. At my six week check my Liver toxicity had shot up (Neuts had increased slightly which was good.) The Doctor has stopped my Ribociclib for two weeks to see if LFTs improve.
i am so scared that they don’t restart and that’s one treatment down.
Hi there
I had about 6 cycles of ribociclib before it was stopped as my liver enzymes shot up too. It took 4 months before they dropped down to normal levels again and I was then started on similar drug called palbociclib and my enzymes are fine.
ribociclib from April-October 2023 and palbociclib from February to now. The good thing is that my ct scans over this time showed no bad changes and I continue to be stable.
I do drink lots of water and perhaps that’s helped my liver cope with the toxins
Try not to stress about not having the palbociclib though I know it’s scary all the time living with this disease. I also have rheumatoid arthritis so that maybe didn’t help my liver to recover quickly
it’s so different from person to person and maybe your liver will recover quicker than mine did, I hope so for you xx
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007