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Ending treatment

Lornak
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Hello my name is Lorna. 

I was diagnosed with peritonial and ovarian cancer in 2021.

I started paclitaxol and carboplatin chemotherapy. After the first 3 cycles I had surgery to remove womb neck of womb, fallopian tubes, ovaries, debulking and removal of omentum. It showed the chemo had been successfull. After histology I was diagnosed with HRD then another 3 cycles of chemotherapy. I was given Niraparib at the full dose which reduced down to 2 tablets due to side effects. 

'I've been taking Niraparib for 3 years with great success. It's really worked for me. 

However I've just had an appt at the clinic and was told that I will stop treatment in two months.

I'm well and my bloods are always good and in range.

I am a little confused because I understood that if you are well you could continue with this treatment. 

Your information also states this. 

However it's been decided that there is a 3 year limit.

Can you tell my why??

It's it due to funding??

Does your own research come to the same conclusion? 

This drug has kept me cancer free soI 'm obviously concerned and scared as to what will happen when I stop taking it. 

Can you please tell me if there are women who are taking Niraparib past this 3 year period. Is there anything I can do to remain on treatment.

You're hopefully. Lorna

  • Hello and thank you for contacting us.

    It is difficult for us to be involved in individual patient cases as we are not doctors and cannot give a medical opinion.

    But I can give you some links that may be helpful for you to read and take back to your doctor to talk it all through. This may help in understanding your situation better.

    All treatments have an endpoint, whether that is a certain dose, time frame or there is a change in its effect on the cancer. But I appreciate this is very difficult to hear.

    From our website information, we understand that as long as Niraparib is working and side effects are not overwhelming then this can be continued as the specialist feels is appropriate.

    In the research available, that influences the NICE guidance for NHS practice, only a small percentage of ladies got to 3 years of treatment with this drug. This is either because they progressed or were overwhelmed by side effects. Those patients that got to 3 years of treatment were continued if the treating team felt there was enough evidence that it would be of benefit. Please see the section I have highlighted on page 17 of these NICE summary papers.

    If drugs cannot be funded by the hospital trust there can be an application to the Cancer Drugs fund. The consultant involved has to apply and show that someone will have, or has, the potential to have a positive result.

    If you feel you would like a second opinion on this decision do discuss this with your doctor. Sometimes having a second team review your medical notes can help you feel that everything has been looked at.

    Take care and I hope some of this is helpful. You must understand all the decisions made about your care, so do talk this through with them to hear how they came to this decision.

    If you would like to talk anything through with the nurses on the helpline then call 0808 800 4040. Lines are open mon-fri 9-5.

    Sarah.

  • Offline in reply to CRUK Nurse Sarah

    Thankyou so much this is very helpful. I have an appointment next Tuesday to discuss treatment. I really appreciate your input. Thankyou once again. Forever grateful. 

  • Offline in reply to Lornak

    Hello, how did you get on looking into getting the medication extended? 

  • Offline in reply to Lornak

    Hello, did you manage to get your medication treatment extended?

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