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

Hi Willow.

I sent a message last week but it hasn't appeared on here. I hope this one does. I'm so happy you have the outcome you wanted. It would be good to know the statistics on the two ladies you mentioned. 

I've got a scan booked on the 13th March of then an appt with the consultant. I'm really not sure what they might say. My 4 years is up at the end of March. It's given me hope knowing that you too have been able to continue treatment. Fingers crossed I get on ok. 

Can I ask where you are living?  England, Wales, Scotland or Ireland. 

Take care and I would love to know how your getting on. If ever you want to contact me directly for chats etc I'm happy to do that. X

Hi Willow. I'm so pleased you had the outcome you wanted. Please let me know how you are doing. 

Hi Willow I hope you are doing well.

I’ve been taking niraparib for 4 years and I just wanted to emphasise the information you've been given regarding the cases of leukaemia caused through niraparib.

I’ve experienced very little side effects on my time taking niraparib and bloods have always been good. I was diagnosed 7 years ago and I’m so glad niraparib was available.

I don’t want to cause you alarm but I believe knowledge is invaluable and want to share what has developed with myself.

My blood counts dipped in March this year (2026) my niraparib was stopped for a couple of weeks to see if they would recover, there was a slight increase but not enough so after a couple more blood tests they decided to do a bone marrow biopsy and this is where the story takes a turn. I was diagnosed with Myelodysplastic with a Mutated T53 cell caused through niraparib. I’m in early talks with consultant but I just wanted you to be aware of this secondary cancer which only happens in a small percentage of women but nevertheless still can happen I guess I’ve been unlucky but I wouldn’t change any of the treatment I was given as it’s given me 7 years of enjoying life and hopefully many more.

good luck on your niraparib treatment