Niraparib

[Katiebairdie]

I saw oncologist yesterday and got results of me scan. Not very good. Also my CA125 has been rising every time I have a blood test.

I have been on Niraparib for 6 months. After a few attempts at the beginning we eventually found the right dose for me (200mg). I had few side effects to start with but they sorted themselves out apart from breathlessness. I have had 5 pints of blood to keep me going.

I had decided that if CA125 went up by more than 20 I would call it a day. That is what happened and doctor was of the same opinion. Now going back to chemo.

Funnily enough I am pleased about one of the side effects. I was told to use factor 50 sun cream and wear a hat when out in the sun so I came back from my last sunny holiday as white as when I went. I am going on holiday next week and will still be careful but will venture out with a mere factor 30 occasionally 😎😎.

I hope others on this drug have a better outcome.

Kathy x

[Hidden]

Hi Kathy......what rotten luck! I guess they don't know why some drugs work for some people and not for others.......maybe it was not meant to be for you? Good luck with your next chemo. Have a great holiday. xx

[Lindaura]

Rotten luck.

I guess you are not BRCA positive?

I hope your next Chemo regimen will do the trick.

And I hope you have a lovely holiday.

Best wishes,

Laura

[marylondon]

Very disappointing for you but wishing you all the very best with your next chemo . In the meantime, enjoy the warmth & sunshine 🌞 on your holiday and restore yourself . 😎

Mary x

[CLP72]

Hi Katy

I’m also on same drug. And clearly not working for me either only been on it 3 months. CA125 remains at 28 but it had gone up 10 in 4 weeks. Latest CT Scan showed 2 small nodules on my bowel and something on my 3rd rib, which consultant said is a very strange finding as it’s so rare for ovarian cancer Togo into bone. So had a full bone scan yesterday and get results Wednesday. So like you I may have to restart chemo. So fed up with it all now. Good luck with chemo.

From

Claire

[Katiebairdie in reply to CLP72]

If i were you perhaps give it a couple more months. I felt it wasn’t working after three or four months but kept on hoping for something to change.

Saying that your complications are different to mine so please don’t jump to any conclusions.

Weirdly I’m looking forward to chemo because I’m sure things will begin to work better for me than Niraparib. I’m sure you and your consultant will work together to get a good result.

Very best wishes

Kathy x

[CLP72]

Hi

The consultant wants to keep me on it for a couple of more months due to CA125 only being 28 and the nodules are so small not even 1cm. Just got to work out what is in my 3rd rib now.

When was you diagnosed? How many recurrence have you had? Hope you don’t mind me asking

Claire x

[Katiebairdie]

Hi Claire

I don’t know how you are feeling re side effects but with a CA125 that low I would think you can safely stay on the drug.

I was diagnosed in 2014 and had two recurrences before starting Niraparib. Back to carboplatin in February.

Kathy x

[CLP72]

I was diagnosed 2016 and already on my 3rd recurrence. I was hoping this drug would keep me off chemo for at 1 year