Side effects of niraparib

[Holsgram]

Hi,

My mum will be starting niraparib tablets next week as has stage 4 ovarian cancer and I just hoped that there are some positive stories / experiences of anyone on these?

Also how bad she might feel for the first few weeks

Thanks

Hollie

[jules144]

Hi Hollie, I've been on niraparib since October and have felt quite positive. I have had times of feeling a bit queasy and get tired, but nothing I can't cope with. They seem to be working well so far which I'm happy about. Hope your Mum gets on okay with them too.

Julie

[Holsgram in reply to jules144]

Thank you, that’s good to hear. Wish you well

Hollie

[BallyMacfan]

Hi when I first started taking Niraparib Sept22 it did make me feel lightheaded and my blood pressure quite high so I monitor it at home now but it's all settled down now.I have bloods done once every 2 months which is very reassuring. I take 300mg a day and the only thing I have found now sometimes i get a dry mouth but that's no problem.

I know everyone is different but for me Niraparib has given me hope and at the moment it's all going well . Hope this helps you and your mum.

Jaynex

[Holsgram in reply to BallyMacfan]

Thank you for replying, this is giving me positive thoughts and hope to. I will forward to my mum.

Wish you all the best and sending hope back xx

Hollie

[Ydaff in reply to BallyMacfan]

Hi BallyMacfan,

I am also Stage 4, and have been taking Niraparib for exactly a year. When I read all the possible side effects in the leaflet that came with the tablets, I was really worried about taking them and for a fortnight after starting, slept with a bucket by the bed ‘just in case’. However, I never needed it. My oncologist advised me to take the tablets at night, with food, as he had found this to be helpful with a lot of his patients. It does seem to help me, as if I don’t eat with them, I can feel just a little nauseous. I haven’t really had any problems with them, other than the occasional wakeful night, and feel very lucky to have them. They’re very expensive, so I’m sure your mother’s oncologist wouldn’t offer them if they didn’t think they would help. Everyone reacts differently to cancer treatments, but how fortunate we are that there are so many options available today. Your mum will be closely monitored and that’s very reassuring. I hope she does well on them and they work for her as they have for me.

[BlueHue22]

Hi There,I've been taking Niraparib since July 23. I just looked back on your last post and saw your mum was sadly unable to have her operation. I have been in a similar situation. I had an attempted ops after 3 months and 6 months where I woke to find they were unable to operate both times.

Niraparib seems to be working for me so far. My CA125 was within range when I started it and has come down a bit more while taking it. At the start I had bad fatigue but this settled within about a month as my body got used to. A few other little niggles and a few weeks off here and there which turned out ok. I did have a blood transfusion in December due to feeling breathless as red blood count fell. Had the transfusion and returned to good health fairly quickly.

I'm happy to be on Niraparib. Its given me hair, a break from hospital appointments, a good life and hope! I live to the monthly CA125 but am grateful to be where I am and hope it continues.

I think working closely with whoever monitors you monthly helps. Most things that crop up can be resolved in some way. I'm also glad I have monthly monitoring on this drug.

From what I've seen everyone has a slightly different reaction to it. Your mum may just sail through it fingers crossed.

Wishing you and your mum the very best outcome xx

[Holsgram in reply to BlueHue22]

Thank you for your response.

My mum has been told by her surgeon that she can’t be operated on again. However we are looking to have a second opinion just to be sure. Did you receive one?

Xx

[BlueHue22 in reply to Holsgram]

They weren't going to try again after the surgery I had at 3 months. I got a 2nd opinion and was able to try again after 3 more chemos as the cancer may have reduced enough. I was to told they would try but no guarantees. I went into surgery but it still wasn't possible. I was glad I tried and it didn't get me down that much. I'm still in good health despite all this xx

[Holsgram in reply to BlueHue22]

Hi,

Hope you are well, just wondered if it was possible for my mum to reach out to you in the near future. You seem to be coping well with this and I just wondered if you could maybe offer any advice that’s helped.

Thanks

Hollie

[BlueHue22 in reply to Holsgram]

Yes thats fine, feel free to PM me x

[Holsgram in reply to BlueHue22]

hi,

I hope you are well.

We spoke a while back on this and I just wondered if I could just ask a couple of questions?

Has your CA125 ever slightly gone up?

My mum has been on the same tablets for just over 2 months and it went right down within range but the blood test results she had today said it’s gone up by 55. I just wondered if yours fluctuates from time to time?

Thanks

Hollie

[BlueHue22 in reply to Holsgram]

Hi There, it went up by 10(still with range) when I had a bad tooth abscess but went back down again over a couple of weeks. Has your Mum got any inflammation or infection that could be putting it up at the mo? x

[Holsgram in reply to BlueHue22]

Hi there,

Thanks for getting back to me.

She went to the doctors yesterday but she didn’t have any infection. They seem ok with it going up but obv it does panic is a bit slightly.

Do you get your bloods checked monthly?

Thanks

Hollie

[BlueHue22 in reply to Holsgram]

Hi Hollie, yes bloods done monthly. It could spontaneously go back down next time so sit tight. I know its so hard getting blood results every month but it does get easier over time I've found. Sending healing vibes to your Mum💛Take care x

[Mintybiscuit]

Hi, I’ve been taking 200g Nariparib since November. I decided to take it in the morning rather that night in case it affected my sleep. I suffered from nausea for the first couple of weeks an hour or so after taking it but now only occasionally feel nauseous. So far my bloods and blood pressure have been normal. I get tested every month. However, I must add that my blood pressure has gone up. Before taking Nariparib it was always very low. Generally I feel okay on Nariparib and am glad I’m able to take it. I feel quite tired but that could be down to a lot of things! I wish your mum luck. For me, the initial negative side effects have definitely decreased a lot. But I’m always conscious that this could change.

[Holsgram in reply to Mintybiscuit]

Thank you! It’s so nice to have these forums and hear your stories. Really is giving me and my mum hope for the future.

Take care, I wish you all the best and hope you only get good things come your way xx

[Beatyourself]

Dear Hollie,

Your mummy is happy to have you and you take such a care for her.

I started with Niraparib in August 2023 and was so scared due to all side effects mentioned on the medicine.

My doc recommended me to take it in the evening to avoid nausea and I actually can’t remember having too much trouble with that ever.

My only issue with it is that it caused constipation but I found my way to cope with it with bigger or smaller success.

Think of it as your healing pills. Every time I take it I ask it to do its job and not cause any harm

In the end we should be happy there is a way how to protect our bodies from this disease.

I wish that it does miracles for your mom! Take care 🍀🙏😘

Bea

[Holsgram in reply to Beatyourself]

Thank you! It’s so nice to have these forums and hear your stories. Really is giving me and my mum hope for the future.

Take care, I wish you all the best and hope you only get good things come your way xx

[Curry55]

I have been on this drug for 8 months I started on 200mg and found the side effects too harsh for me personally everyone is different I now take 100mg which suit me better

[Betti99]

I have been taking 200mg for 3 years with little side effects. I have stage 3C ovarian cancer. Hope this gives you some peace of mind!

[Holsgram in reply to Betti99]

Thank you for replying, yes this is very comforting.

Can I ask if you had surgery at all? I understand if you don’t want to answer.

Thanks

Hollie

[Betti99 in reply to Holsgram]

Yes I had surgery 3 years and 8 months ago followed by 6 rounds of Chemo.

[Holsgram]

thank you, take care x