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.
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.
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.
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.