Ribociclib. Neutrophils

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Hi lovely people. 

I've had successive reductions of ribociclib since my metastatic diagnosis last May. My team are now looking at alternatives.  I can't find any (sensible)  reports or studies on this. 

Has this happened to anyone else. 

Feeling a bit worried. 

  • Sorry to hear that you are feeling a little bit worried because your term is looking at alternatives to the treatment you were having.  Hopefully they will find something to suit you.

    Best wishes

    Daisy53

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  • Hi Daisy.

    Thank you for your kind response.

  • Hi

    Yes same happened to me, ended up in hospital for a week with Sepsis. Neutrophils a huge issue.

    oncologist moved me to Palbociclib and this improved it massively. Same group of drugs but a lot better to manage. Speak to your cancer team see if they can give this as an alternative.

    good luck, hope you get sorted soon. 

  • Hi Bassy.

    Thankyou for telling me this. I've been hospital 4 times in 12 months with infections.  Seeing my oncologist tomorrow. So waiting to hear what he says. 

    Thanks again.

  • Hey, how did you get on?

  • I've not tried ribociblib.  Sounds lethal.

    I had radiotherapy and desunab injection last week.  No relief yet from spine pain. It not manageable.    Anyone else have mets to spine and did radiotherapy work for you ? 

    I've declined ribociblib and exesteme tabs but need to try something  x  thinking of everyone x

  • Hi Bassy 1969.

    I'm still on hold as my neutrophils were at 0.6 last week. Another blood test tomorrow,  then we'll see. There is the possibility that I'll go onto 3 weeks on and 2 weeks off. Fingers crossed

  • Hi Shaw. 

    I didn't mean to put you off ribociclib. Please have a good chat with your oncologist.

    Tge research seems to suggest ribociclib still is effective at lower doses.

    Just to say in-between the infections I've been feeling quite well. I've been on several trips abroad! 

    Hope you find an option that works for you and controls pain better.

    Sending best wishes and hugs.

  • You've been abroad?!!!!!  Wow.

    I can't walk round the supermarket.   The pain too bad in spine. Radiotherapy not helped yet ( only 5 days ago )  lve not started any treatment for the cancer because l worry l will be worse with infections etc. No quality of life atm.

    Hope you stay well. Thankyou xx

  • Hi all

    I’m on Palbociclib (cycle 8) which is the same group as Ribo.  My neutrophils have been low at times but an extra week off has sorted that.  Twice I developed a cold/cough when bloods were low.  My Oncology team stress so much to contact them if you have any issues at all.  By contacting them quickly, they brought me in and did lots of bloods, ECG, etc and put me on IV antibiotics.  Thankfully my neutrophils went up and I was sent home the same day with strong antibs. The hospital rang me at home over the next few days to make sure I had no temperature or worsening symptoms of the respiratory infection.

    It’s frustrating as is the tiredness but I now know the importance of contacting the Unit quickly with any issues.

    Hope that helps.

    K x