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Ribociclib

Remy
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I had mastectomy in Feb 25

I became anaemic so had investigations incl gastroscopy and colonoscopy

Anaemia cleared but colonoscopy found polyp, since removed, and a change to one of my ribs

Had nuclear medicine bone scan that was inconclusive on rib so another scan in Feb 26. The scan showed previous rib fractures but all were ok

Letrozole did not work on tumour so am now on examestane

since diagnosis 12 months ago it just seems that more and more things are being discovered. I am thankful that they are but feel so flat  as it seems neverending

i have been asked to take Ribociclib for three years. I thought this was something similar to Examestane but when I collected my first course on Thursday it seems this usn’t so

i have been told it is not chemo but handling nstructions and side effects are quite scary to hear

is anyone ekse taking this drug and how have you found it?

i am petrified to take my first dose after my weekend away

Hopefully someone can offer me reassurance

Thank you for reading this

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    Hi Remy I am on Exemastane and Ribociclib.  Ribociclib is a targeted therapy to inhibit hormone positive cancer growth.  I have been on this for nearly a year now and side effects are manageable.  I was on 600mg at first but because of a horrible rash they have reduced it to 400mg and I am fine with this.  Not everyone gets the side effects and if helps to reduce the risks of reoccurrence.  The oncologist or breast care nurse should of explained it all to you.  Perhaps you can give one of the nurses on here a ring tomorrow to get clarification.  Good luck and try and not be petrified it is not that bad.  Big hugs.

    Lee x

  • Hello Remy and thanks for your post,

    I am sorry to hear about the difficult time you have been having and hopefully after all the different investigations life will become easier for you.

    I can understand reading about potential side effects can be unsettling but these are side effects that have been reported and not everyone goes on to get them.

    We have a page on our website about ribociclib.

    It is important that if you do get any side effects that you let your team at the hospital know.

    You have posted in 'ask the nurses' but if you post on another thread or start your own you may get responses from other women who are taking this drug.

    Breast Cancer now have a service called Someone Like Me where they can try and put you in touch with someone having a similar treatment.

    I do hope that you tolerate this drug and everything will settle down for you.

    Do give the nurses a ring if you want to talk things through.

    The number to ring is Freephone 0808 800 4040 and the lines are open Monday to Friday 9 am to 5pm.

    All the best,

    Catherine

  • Offline in reply to CRUK Nurse Catherine

    My primary breast cancer eventually spread to my lung 6 years ago. I have been taking Ribociclib and exemastane since then the only side effect I’ve had is anemia and low white cells meaning my energy levels are low but it is worth it to be alive. I’m currently on a maintenance dose of 200mg but resting at the moment preparing for my second knee replacement next week. My last CT scan at the end of September showed everything stable. 

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