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Ribociclib/Letrozole Combo - How long have you been on this plse?

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  • hopeful_cath01hopeful_cath01 Member Posts: 2 New Member
    Hi, started on ribo600mgs, letrozole and bone inj. my problem has been the ribo makes me nauseated and vomiting even with antiemetic, ribo ceased , but i am to start again on 200 msg on monday. Has this happened to anyone else ?
  • elisewjkelisewjk BrisbaneMember Posts: 57
    Hi @hopeful_cath01 I was diagnosed as Stage 4 Denovo with bone mets in Oct 2018. I started the same regime of drugs you have Ribo's, Letrozole and Denosumab. The protocol is/was to start you on the highest dose of 600mg. The studies showed that a large proportion of people just can't stomach that dose due to side effects, the most common being nausea and low neutrafils. I too suffered immensely on 600mg with nausea even with the maxelon and neutrafils went too low. So after some trial and error, many side effects, down to 400mg then down to 200mg. My body found my happy place was 200mg with minimal side effects, no nausea and I've been on that dose since then. The lower dose is just as effective as a higher one, its just that your body has to find the happy place where it can deal with them. Please discuss this with your Oncologist... When I started the drugs were still fairly new so I went thru several cycles to try and find the sweet spot for me and I had varying and different side effects each cycle til I settled. Please note all your side effects and discuss them with your Onco...  your quality of life is important too. :) Best wishes, take care. Hugs Elise
  • hopeful_cath01hopeful_cath01 Member Posts: 2 New Member
    thanks Elise that’s very helpful

  • GlynnisGlynnis Member Posts: 342
    Hi @elisewjk I have been on the ribo/letrozole combo since April 2019, I have bone Mets in m spine x 2 and my pelvis, my spine ones are controlled by the combo but my pelvis one has started to grow. All in all I’ve been on the 600mg daily since I started don’t get much nausea anymore, have low neutrafils but just in the limits, very dry skin on my hands which peels like a sunburn and fatigue other than that I’m good on it. Now looking at possible radiation on my pelvis met
  • DeebsDeebs Langwarrin Victoria Member Posts: 15
    Oops 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 💪 ❤ 
  • cranky_grannycranky_granny Penrith NSWMember Posts: 429
    Im 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 
  • HinterlandSianHinterlandSian Member Posts: 23
    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.
  • PollyMammaryPollyMammary Lismore NSWMember Posts: 2
    Diagnosed  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?



  • elisewjkelisewjk BrisbaneMember Posts: 57
    Hi @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 :)
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