Ending treatment

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

  • Hi Willow. I'm pleased that you are well and you have another 12 months treatment. Well done for advocating for yourself. It would be interesting to know how many ladies are at the 6 and 7 year treatment point, to put those two ladies mention into context. My 4 years is coming to an end in March. I've been booked in for a ct scan 13th March. My last bloods 6 weeks ago were all in range. If this is still the case I will be asking for another year of Niraparib. I've not had any different side effects over the last year. After a late diagnosis and initially being told my life expectancy was limited (6mnths) and I would probably have palliative care with no treatment. To be offer paclitaxol and carboplatin, surgery and more chemo, then diagnosed with HRD and being lucky enough to be offered Niraparib. I really only expected to still be here after a couple of years if I was lucky ( Expectancy 5 years)So I feel I've absolutely nothing to loose. Research showed in the trial that a percentage of ladies on placebo also developed blood cancer. The percentage was very low in both groups and I thought it worth the risk. I hope you continue to be well and I will let you know how I get on. Are you in England? I'm in South Wales.  I owe everything to my brilliant oncologist at hospital and brilliant surgeon and their teams at Hospital. My daughter does not have HRD so her treatment is different from mine. She has had surgery and just finished the last chemo cycles and just started on 'Bev' every 3 weeks for 18 months. We have been referred to a professor of genetics. It won't help us but could help our granddaughter. Neither of us have the BRCA gene. But we may carry another familial gene. It's devastated our family to know mother and daughter have the same cancer. Keep well and best of luck. X

    • That's fantastic news Willow. Well done