Has anyone been on this treatment and if so how are you coping.
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Yes I am at cycle 4, 600mg, so new. Also on Fulvestrant and Denusomab.
Side effects are manageable.
There is a Facebook group you can join
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Hi Marchelle
Hope you are well Sister. I was on this treatment for over 6 months, with Lextrozle and the monthly denusomab.
I found the treatment to be very tolerable, hardly any side effects for me. I do have the Fulvestrant now with piqray as i have the pik3ca mutation unfortunately i had to come off the Riboclicib, I am stage 4 pr and er positive her2 negative. Because i had progression only due to the mutation i had to change treatment, but like i said the Riboclicib was good for me with little side effects. The Lextrozle caused a bit of aching if you go on that with it and a few hot flashes but manageable. All the best, let us know how you go 🩷🩷
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I’ve just completed 3 cycles of ribociclib and I’m on fulvestrant and 3 monthly Denosumab.
I don’t really have side effects other than tiredness and a bit of thinning hair although I’ve had to have a dose reduction and delay each time of ribociclib due to low neutrophils . That’s just the way my body reacts . I guess everyone is different but given the list of side effects they tell you I was pleasantly surprised. I think my sleep may be a bit affected but not sure my team believe me !!
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Hi,
I’ve been on Denosumab, Letrozole and Ribociclib combo for 11 cycles now.
Neutrophils dropped and had to go to minimum dose but nothing else to be honest.
Nausea is common, but you will get anti sickness tablets with first cycle.
So far so good for me.
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Hi @marchelle
I am on my 4th cycle of Ribociclib which I am taking alongside Letrozole plus 4 weekly Zoladex and Denosumab.
I had some hair thinning the first month that I started on the Ribociclib although I had had one round of chemo before that which may not have helped. Otherwise I have had very few side effects. I do have to manage what I do as definately more tired but still working full time and managing most things in moderation!
When I started and read all the possible side effects I was expecting much worse, and know that we all react differently.
All the best with your treatment. Sending you positive thoughts x
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Hi All,
True the list of side effects is daunting.
I was put off taking the anti nausea meds because of them and the fact i live alone, so if i’d had an extreme reaction i’d have been in no state to get help.
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I’m on my second cycle and the side effects are minimal - to be honest I don’t know I’m on it. It makes me worry it isn’t working as I’m really not feeling it and I don’t have a scan until February …
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Hi Marchelle i saw your post on your PIK3CA mutation. i was wandering how you are coping on Alpelisib and fulvestrant injections. So many people have different side effects did you
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Im on prostrap injection 3 monthly, exesteme, then ribociclib. I feel sick in the morning but getting on really well. Thanks
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