Niraparib

[NewtonEmma1900]

I have been taking 300mg of Niraparib for the past two weeks. I had a bit of sickness after a few days but since then have been really well, although a bit tired. I was meant to go for my weekly blood test today but overnight developed what could be S and D, although I have only been sick once. I really don’t know if it’s a bug or side effects. Has anyone had similar? If it’s a bug I clearly can’t go for my blood test. I don’t have any stomach cramps! In anticipation of some gidance.🙏

[Katmal-UK]

S and D are side effects of parps. Do you feel ok otherwise?

[NewtonEmma1900 in reply to Katmal-UK]

I don’t have any other symptoms other than being a bit tired, I didn’t go to work today just in case it’s a bug.

[Katmal-UK in reply to NewtonEmma1900]

I would definitely contact your team to see what they advise. To me, having been on a parp for over 9 years, it sounds like a side effect but obviously your team are best placed to advise x

[OvacomeSupport Partner My Ovacome Team]

Hello NewtonEmma1900,

I was sorry to read that you have been experiencing S+D overnight. I can see that you have already had a supportive response Katmal- UK and I’m sure that other members of the online community will be along soon to share their experiences. I was wondering if you’d been in contact with your clinical team for advice about this? If you haven’t already, I would encourage you to contact them for support with the symptoms that you are experiencing and for advice about the blood test that you are due to have today.

Please do get in touch if there is anything that the Ovacome support team can help with. You can contact us by calling 0800 008 7054, by emailing [e-mail] or by sending us an instant message through the pink ‘can we help you’ box our website ovacome.org.uk.

Best wishes,

Cathryn

Ovacome Support

[Kaitlinsmum]

Hi Emma, I started on 300mg of Niraparib but soon developed problems with my bowels- severe constipation. My doc lowered dosage to 100mg but I had to take lots of laxatives for the 2 and half years I was on this Parp. You need to discuss carefully with your doc. I wish I could have handled a higher dosage. Doc said once it was lowered they couldnt ever put me back on higher dosage. Hope you get sorted out with what is best for you. Take care

[1821 in reply to Kaitlinsmum]

Can you you tell me why you are no longer talking Niraparib... I was diagnosed with stage 4b oc, had chemo & op, now on Niraparib, I haven't been told how long I will be on them..

[Kaitlinsmum in reply to 1821]

I was diagnosed at 3b. During the 2 and half yrs of Niraparib my bloods were monitored every month. Sadly my CA125 levels started to creep up. I had barely any indication of this, just some pains in abdo which doc put down to scar tissue. A CT scan showed small cancer on top of my liver. Doc decided to watch and wait with CT scans every 3 months. Still took Niraparib cos doc said it was still helping to slow down cancer growth. This went on for almost a year. Just before xmas 2022 she phoned me to say its time for treatment. I stopped Niraparib and went back onto chemo. She says I wont ever be able to go back on Niraparib now. Hoping she has something else up her sleeve or maybe a trial I can join. Everyone's body is different. I hope Niraparib works for you for many many years. Wishing you the best of health. Xx

[NewtonEmma1900 in reply to Kaitlinsmum]

Thank you for replying, I am sorry the the treatment has stopped working for you and that they have another treatment for you. I think I am under no illusion that the drug may or may not work. My oncologist. Has already told me he can’t cure me but hoping he can ‘keep it in check’ for as long as possible. I will try to live the best life possible. Best Wishes

[LesleyGB in reply to Kaitlinsmum]

Me too! I have come to love prunes!

[Tulips66]

Hi, sorry I am probably a bit late to reply to your query & hopefully you are sorted by now, but I just thought you might like to hear my experience with Niraparib so far. I started Niraparib about 8 weeks ago. The first 3 weeks I suffered with very bad reflux & heartburn. It was so uncomfortable I thought if I am going to be like this everyday I am not sure I would continue. I was prescribed gastro tabs & anti sickness but taking these made no difference except caused constipation. I have an ostomy bag so I decided to stop taking the gastro tabs & started drinking glasses of milk through out the day. I dont know whether it was pure luck or down to drinking the milk but my stomach was much better. Unfortunately after been 4 weeks on Niraparib I was taken of it for 2 weeks as my platelets crashed down to 71. After the 2 weeks off I had another blood test & my platelets went up again so now I have been put back on 200mgs Niraparib & so far so good no stomach issues, no constipation & platelets are fine. I hope you can tolerate Niraparib & it works well for you. All the best going forward X

[NewtonEmma1900 in reply to Tulips66]

Good Morning, thank you so much for your reply, My S and D has now gone, although I still feel a bit nauseous so taking anti sickness. Pleased to hear that you are dealing with your gastric problems. Platelets do seem to be an issue for some, mine were ok after week 1, but I know it’s early days, I didn’t have a problem with platelets on chemo but my neutrophils were sometimes low. I am currently waiting for the result of this weeks test. Only time will tell whether or not it keeps the 125 down - sending best wishes for your treatment