niraparib

[NewtonEmma1900]

Thank you for all your support so far on my journey. Having got through my second recurrence the carbo/caelyx worked well and my CA125 was down to 6. I have been on Niraparib for 10 weeks. Starting on 300mgs. After 4 weeks I had a break because my platelets were very low, subsequently the dose was reduced to 200mgs (which I understand is quite common). This weeks my platelets were a bit low but 2 consecutive CA125 have shown a slight rise. I know the numbers as yet are not worrying but I wondered how others have found the balance between keeping the platelets high and the CA125 low. Katy 💐

[babs1120]

Hi, I am also on Nirparib but started on 200mg last July, I never ask for my CA125 results I just think it's one less thing to worry about and leave it to my team to inform me if they were worried about it. 20 years ago was my first Ovarian Cancer when my CA125 was 4,000 odd. After surgery and Chemo I was given the all clear I under went a blind trial for 5 years where I didn't know if I had a reoccurrence or not as my CA125 levels were never disclosed to my self or my team. This was to see if any other symptoms of a reoccurrence were picked up by the team or myself. So I don't want to worry myself with it every month. I have no idea how to keep the CA125 levels low, I just get on with life, try to eat a good diet and exercise a little bit I am also coming up to 71. I have a few aches and pains but so do most people of our age. Good luck with your Platelet counts

[NewtonEmma1900 in reply to babs1120]

Thank you Babs, I turned 71 last Christmas. I still work part time and on average walk 10,000 steps a day with my dog. I feel really well apart from the insomnia and getting a bit tired but I am trying to grab life (going on a singles trip to Sicily in 2 weeks). but occasionally I fall into a black hole. My diet is pretty good, if there was something that would help the platelets I would happily add that?. Best Wishes Katy.💐

[babs1120 in reply to NewtonEmma1900]

Hi, Could I ask you who you got your travel insurance from please? if you want you could private message me. I am looking to go to Rhodes in September. Have a lovely time on your holiday

[NewtonEmma1900 in reply to babs1120]

I use insureancewith.com

When I went to France in September I paid £70. For this trip I had to answer that I was on Niraparib and yes to low platelets so the cost increased to just over £120 for a week. They are very detailed with their questions on line but if need be you can phone them.

Katy

[babs1120 in reply to NewtonEmma1900]

Thank you x

[Rosado22]

I’m keeping a food/drink log in my diary to try and see if this helps my platelets and hg after my break and dosage reduction. I’m not going to ask about ca125 and hopefully they won’t mention it either. Going to butchers now to see about adding some liver into my diet, which I’ve not had since childhood. I now know what low platelets looks like on me so will be rushing to get a blood test if I see blood in my nostrils.

[NewtonEmma1900 in reply to Rosado22]

That all makes sense. I don’t normally eat very much meat and I have been trying to increase it . I don't mind eating a little bit of liver so perhaps should try to eat more!

[Rosado22]

Got my liver! Will be checking online cooking methods etc and having my beet juice / pomegranate after the meals to maximise absorption of goodness!