Long term use of Niraparib - ovarian cancer

I have been using Niraparib for 15 months and to date the main side effects are heart palpitations which I take bisoprolol for and fatigue. Has anyone else out there been on this drug for a while and if so how long and what if any side effects do you have? Also, if anyone has had to come off it why and for what reasons? Any feedback gratefully received, Katy 

  • Hi there,

    I wanted to send a reply to your post to give it a little boost, so a few more people should see it. If others have similar experience to share then hopefully they'll see your post and send some replies.

    If you have any concerns or questions about this, do discuss these with your doctor when you can.

    You can also speak to one of our nurses if you'd like to get their thoughts at all - you can reach them on freephone 0808 800 4040 (Monday-Friday, 9-5).

    Wishing you all the best,

    Ben
    Cancer Chat Moderator

  • Hi Katy

    I was on Niraparib 200mgs for nearly 18 months but it stopped working for me, my ca125 didn't go above 20 whilst on it but it was steadily rising each monthly blood test, at the start of taking it I had a constant headache for two weeks, also fatigued and felt rubbish, but it did clear up and then I was fine with the dosage after being rushed into hospital in february this year for a blocked bowel, I  was taken off Niraparib and after a colonoscopy later, I now have had a stoma for 6 months due to ovarian cancer recurrence in my large bowel, I've just completed my 2nd lot of chemotherapy ( carboplatin & caelyx) 6 months of 4 weekly, I'm now awaiting a scan on 28th October to see if I'm all clear for now, if so it will be 3 monthly scans. I'm not sure what will happen if I'm not, but will cross that bridge if im not!  I hope all goes well for you, stay strong, ask your oncology questions about your treatments no matter how silly you think the questions are, as they are best placed to give you answers as everyone's journey isn't the same, wishing you all the best.

    Rose xx

  • I've been living with ovarian cancer coming up for 3 years. It metasticised to my peritoneal area & a lymph node. It was discovered when I could hardly breathe. I was sent to the Medical Assessment Unit for tests which showed my right lung was filled with fluid. From a needle aspiration result, CA125 was found when the fluid was tested. Had a drain fitted to have the fluid drained. This was left in for 6 months before fluid stopped accumulating. I've had Carboplatin & Paclitaxel twice. First time had 8 cycles. Had a reaction to Paclitaxel when first given it & treatment was slowed to 5 hrs. Had 22 treatments of Avastin then had a break and the cancer progressed. Had fluid build up in my lung again & had a drain inserted again to remove the fluid. Started another round of Paclitaxel and had a reaction with Carboplatin on the 7th cycle. Was put on Niraparib. Just started my 7th cycle on it. My CA125 has increased with each 4 weekly review to over 100. CT scan 5 weeks ago showed cancer stable. Seeing oncologist tomorrow for review. Am concerned CA125 keeps rising. 

  • Thank you for your comments above it really helps to know how others are finding the medication. I hope your visit to the oncologist has gone well and your CA125 levels are stabling. Wishing you all the best, Katy 

  • Hi Rose, Thanks for your comments above. I have also suffered with a lot of bowel obstructions due to wide spread adhesions and have to manage what and when I eat really carefully. Fingers crossed for your scan on 28/10. I completely agree with your approach of ask questions and we are all different in terms of our cancer journeys. Wishing you all the best, Katy 

  • Unfortunately my CA125 has gone up again and my oncologist has ordered a CT scan which is on 18 Nov.

  • I am so sorry to hear this and wish you all the best for your scan on 18/11. My CA125 went up a bit last week also and they are keeping an eye on it. xx