How to manage Niraparib side effects

[Jayniiee]

Hello lovely ladies. I wonder if anyone who is on Niraparib could share their experiences? I started taking 200 mg a day on 27th May, after having 5 chemos, surgery and then three more chemos ending on 22nd April. I am exhausted all the time, and wanting to sleep during the day as well as sleeping all night. Also lots of aches and pains and generally feeling like I'm 90 and not 53. Prediagnosis, I was very active, and fairly fit, with running and swimming. Now I have trouble getting out of the car lol. Has anyone else found this? Did it get better? or can anyone recommend things to do to help?

[Jingles6]

Hi Jaynilee

Yes I am on 300mg a day after 6 rounds of Chemo and I feel like my bones ache! Some days worse than others. My skin can sometimes feel sore too, it comes and goes. My oncologist said for the aches and pains to take a pain killer ie paracetamol. I have been on Niraparib now for 6 months, it is early days for you as it has only been a month. I think it takes time for your body to adjust to the drug. Hope it gets better

Best wishes

Jane

[Jayniiee in reply to Jingles6]

Thanks Jane..Fingers crossed it does get better.. It's the wanting to sleep for hours in the day that is a tad annoying. I'm grateful that my blood pressure and bloods have all been fine tho and no nausea. And I managed to swim for half an hour this evening, which was lovely! It's been so long 😊

[Rosebine2 in reply to Jayniiee]

I have been bemoaning recently about how everything hurts when I get out of bed ! I put it down to age, but I suppose it could be Niraparib, Im only on 100 mg though

[Jayniiee in reply to Rosebine2]

Hi Rosebine.. I feel the same, every time i get up after sitting or lying down for any length of time i walk like im 93 instead of 53..I'm sure the dog wonders what on earth im doing walking like that when he follows me around the house lol i started swimming again in the last few days, first time in over a year, was so nice to be in the pool again. I think that has given me a bit of an improvement. Hope it continues x stay well xx

[K95m]

Hi Jaynilee

I have been on 200mgs Niraparib for 4 years now. I had every side effect going but suffered terribly with insomnia. I can tell you though that the side effects do lesson over time and can become manageable . It’s not an easy drug to take for sure but worth it for me. Stick with it and it should get better.

Good luck

[Jayniiee in reply to K95m]

Thanks k95m...that's good to hear that it gets better.. Sorry to hear you've suffered with all those side effects.. I should be grateful that it's only the tiredness really that i have and the sensitivity to the sun, oh and the taste of blood in my mouth.. What's that all about? 😂 I think i might be a bit weird cos i actually like the taste 😂

[bamboo89]

Difficulty sleeping was the most noticeable side effect for me, but I had to come off it after a while because it made my blood pressure and heart rate shoot up and stay there, which was a shame because the drug worked well on the cancer. After I'd been off it for about six weeks, I did notice I felt generally better, but that might have been because I'd started sleeping more normally again. Its possible you're feeling really tired not just because of the niraparib, but because you're still recovering from chemo and surgery too, which wasn't that long ago really. The way I coped on Niraparib was to sleep/snooze whenever I needed to, even if it was just for 15 minutes, but I wasn't working, so had the ability to do that.

[Jayniiee in reply to bamboo89]

Hi bamboo.. It was only the steroids after chemo that stopped me from sleeping, there is nothing stopping me now, every chance i get.. 😉 I'm sorry to hear you've come off it.. I sometimes wonder tho if it really is worth being on it... I think you're right about needing to give it time after the op and chemo too.. I've started swimming this past week and I'm starting to feel a bit better, fingers crossed Im on the way back up now x keep well x

[MyDogKalie]

I started with 300 mg of Niraparib. Had bad problems with my platelets so I went to 200mg still didn’t feel right. Finally I went to 100mg that was much better. I was cancer free for almost a yr and half, now they found a 7mm nodeular. So now I’m going to do chemo again just a different cocktail. Good luck to you and hope you feel better

[Jayniiee in reply to MyDogKalie]

Thank you mydogkalie.. It is starting to get a little better x wishing you the best ofbluck with your treatment xx

[patricia54053]

Hi I started on 300mg ,heart racing and bp to high , on 200mg now, sleep rubbish now and skin drier, but doable,on it since last year and ca125 great ,long may it stay low

[Jayniiee in reply to patricia54053]

Hi Patricia, sorry to hear you're suffering those side effects... But we are made of strong stuff eh 😊 keep well xx