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Niraparb stopping

Laney Jfcb817
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Hi, I had a review today on the phone with one of the CNSs at my hospital.   I will have been taking Niraparib for 2 years in January.  The plan has always been for me to stay on it for at least 3 years.   During the conversation today the nurse said she'd book an appointment with my consultant after I have my final course in January.  There has been no discussion about reducing my time on it and it wasn't even discussed with me,  just dropped in the conversation!  She said this was because the latest research showed there was no benefit in staryng on it for another year.   I am keeping really well on it and my bloods have been fine. I was shocked and am now concerned to be stopping early. Is this the latest advice or could this be a cost issue? 

Many thanks for your advice Helen

  • Dear Laney Jfcb817,  

    Thank you for getting in touch and welcome to the Online Community, we hope that you find it a safe and supportive space. My name is Fiona and I’m one of the Cancer Information Nurse Specialists here on the Macmillan Support Line.    

    I’m sorry to hear that you’ve been needing to take niraparib but it sounds like you are tolerating it well.   

    The National Institute for Health and Care Excellence (NICE) originally used emerging evidence from the PRIMA study and concluded that niraparib could be given for three years if tolerated well. This was in 2021, but the study only assessed people for up to three years, however NICE noted that it could be continued beyond three years if there was evidence of stable, persistent disease and if the treating physician felt that was of benefit to continue with it. Since then, because this didn’t look at the long-term picture there have been updates from ongoing longitudinal trials, looking at outcomes over more years.   

    In relation to niraparib, the PRIMA/ENGOT-OV26/GOG-3012 trial  published more data in 2024 which may be the source of your clinical teams change in practice. It looked at many things, including different types of survival statistic over a longer time span, quality of life for patients taking these drugs, and adverse events including secondary cancers which can occur for some people taking this class of drug. They comment that outcomes are varied across subgroups and influenced by other predisposing risk factors such as the genomic status of the tumour, amount of residual disease after any surgery, and considering any other medications that may have been implemented.   

    It’s difficult for us to offer a definitive answer for you as we have no access to your medical notes. I’d encourage you to chat with your specialist again to explore their reasons for this decision for you. If you feel you would like a second opinion on this your doctor can support and advise on that more. Sometimes having a second team review your medical notes can help you feel that everything has been looked at.   

    On this platform it can be difficult to have a two-way conversation and to fully understand what you are going through so you’re welcome to give us a call to talk about what’s happening over the phone with one of the nurses on our Support Line.  

    I hope this helps, please don’t hesitate to get back in touch for further support.  

    Fiona S 

    Cancer Information Nurse Specialist 

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email or use webchat. 

    Ref: FS/ KD 

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