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.