Forum Discussion
elisewjk
6 years agoMember
Ribociclib/Letrozole Combo - How long have you been on this plse?
Hi Everyone, I've been on the Ribociclib/Letrozole/Denosumab combo now, successfully since Nov 2018. I take only a low dose of Ribociclib, 200mg daily and so far so good. However, I'm heading towards the 18th month mark now and starting to get a little apprehensive about how much longer it will be effective for. I've read studies that have indicated to up to between 20 months and 30 months success for some lucky people. How long have you had success for? Cheers :)
29 Replies
- DeebsMember5 years on this combo still no evidence of active disease... 600mg ribociclib letrozole and denosomab...very stiff in the joints but that's the letrozole and the fact that I am 60 years old lol
- akpvjMemberI am on 11th cycle and after 2nd reduced to 200mg, after discussion I take at night as this reduces my side effects. I am hopeful of a long life with minimal side effects and wish you all the very best
- Oh wow so happy to read someone is in remission
I have exactly the same symptoms im
on Letrozole and Kisqali and the injection
this has given me hope and all you ladies I really hope and pray your doin ok 💕💕💕 - Ballerina33Member
Hi @deebs I am just on this journey and these posts have been so helpful. I am excited to hear someone say remission as it seems so many are reluctant to. Has this been your first line of treatment so far? And big thanks, reading this was hope xoDeebs said:Hi lovely peeps
Great news after 38 cycles I am officially in remmision from stage 4 MBC initially with mets to spine, ribs and pelvis, now no evidence of active cancer in bones 😀 Yes !!!☺ Ribociclib, Letrozole, Denosomab and Vit D with calcium keep doing your thing 😘
Good luck to you all
Love Deebs xxx - elisewjkMemberHi @PollyMammary, have you discussed all your side effects with your Oncologist? The protocol is to start you on 600mg Ribo but more than half of people can't deal with the side effects. Indeed I suffered horribly with nausea, fatigue and low neuts, amongst many and varied other side effect combinations in my trials to find the right dose for me. They can reduce your dose (just as effective) and you wouldn't have to suffer the side effects so much. I started this post in 2020, I'm now on Cycle 37, some 3 years later, on 200mg Ribo's... The Onco recently told me that I'm his longest patient on this combo now and to keep up the good work! Pressure! :D lol :) I have my fingers crossed and hope the good work continues a little while longer still ;) <3 Stay well, take care :)
- PollyMammaryMemberDiagnosed with de novo breast cancer with lymph node mets October 2019
Into my 27th treatment cycle - 3 weeks on 600mg Kisqali/ribociclid and 2.5mg LETROZOLE and one week off.
fatigue, nausea, insomnia, indigestion, bloated in face and body comes and goes
many cosmetic changes like dry, thinning, wrinkling, spotted skin - who is that curly headed clown person in my mirror? - I was on Ribociclib and letrozol but found the side effects too much to handle. Have been switched to Palbociclib instead and am tollerating it much better.
- cranky_grannyMemberIm starting the ribociclib tomorrow 3 weeks on 1 week off and blood tests in the off week. Got switched from tamoxifen to armidex started them yesterday. So i was interested in this discussion hopefully it will slow the growths down. Maybe even holt the growth any any more turning up.This part is all newish though first bone mets were found 2 years ago. They decided to have a growth spurt in last 3 months.
Tagging this one for encouragement - DeebsMemberOops in answer to your question Yes neutrophils were low initially but retuned to normal after short 2 week break at the very beginning but I have been fine since then. 600mgs for 38 cycles and going strong 💪 ❤
- DeebsMemberHi lovely peeps
Great news after 38 cycles I am officially in remmision from stage 4 MBC initially with mets to spine, ribs and pelvis, now no evidence of active cancer in bones 😀 Yes !!!☺ Ribociclib, Letrozole, Denosomab and Vit D with calcium keep doing your thing 😘
Good luck to you all
Love Deebs xxx