Niraparib

Hello 

I have almost same history as you. Started on Olaparib tablets 300mg twice a day for 2 weeks but I have not experienced any side effects. I am also meant to have Avastin infusion every 3 weeks which will start after the operation for reversal of ileostomy on 22/2/23. I believe these medications are very helpful in BRCA1 positive mutation. 
discuss with your oncologist who can reduce the dose. 
good luck

Gauri

Hi Gauri,

Did you also have stage 3 ovarian cancer?Good to know you don't have any side effects from Olaparib. All the best for the upcoming surgery.

Yes stage 3c. I had 6 chemos 3 followed by operation and then further 3 chemos. 

Hi I was diagnosed last year with HGS OC S3. I had TAH BSO op in May followed by 6 rounds of Carboplatin/Taxol. I’m not BRCA positive but I am HRC. I started Niparib 15 Dec but I’m only taking  2 x 100mg per day. I haven’t had any noticeable side effects. Perhaps you could ask about lowering your dose?

That's very encouraging. I will speak to my oncologist. I've also read the side effects especially nausea wears off after 2-3months. So hoping the same for me. I'm just worried if I can handle work and home normally or if I would need help...

Hi.  I have been taking 200mg Niraparib daily for almost a year now.  I was diagnosed with Stage IIIC high grade serous primary peritoneal cancer in early 2021.  I had six carboplatin/paclitaxel chemo sessions , a nine hour ultra-radical cyto- reduction surgery and then two further chemo sessions, after which I started Niraparib.  I am not BCRA positive but hope that the Niraparib willl work for me. I think that the side effects do wear off gradually...certainly the nausea is not really a problem for me now although I still have trouble sleeping and sometimes my Neutrophils drop too low to continue.. I would say that it is worth persevering as many people do not have any side effects after a while.  It is also possible to take a break from the medication for a couple of weeks if you need it.  Because of my insomnia my oncologist also suggested I take the odd day off for a good night's sleep, which makes a great deal of difference to the way I feel and apparently does not affect the treatment.  The only issues with dropping the dose to 100mg are that it is potentially less effective and that once reduced you can't get authorisation for funding  to increase it, or so I have been told.  This may be different in other NHS trusts.  Looking at what women are saying on other forums such as Ovacome there are people who have been on this drug for 10+ years, which is certainly far longer than I expected, and very encouraging.  Unfortunately the only way of knowing whether or not it is working is  if you get a recurrence of the cancer.  I am in my 70s and retired so it is not an issue for me, fortunately, but I would suggest a phased return to work, perhaps part-time initially to see how it goes, when you feel ready.  If it is just the nausea you are worried about I think that will improve. I feel a bit more tired than before but most days just get on with life as normal and do what I can.  I hope all goes well for you.  As with any drug, your body does adjust in time.

Hello, all. I’m very much like you, Paula. I’m taking 200mg of niraparib, once daily. I have minimal side effects—mostly fatigue, skin dryness, all manageable. I don’t know if it matters, but I’m in the U.S. The top dose offered me was 300 1x/day, but 200 was recommended. There seems to be a lot of variation in the size of recommended dose, and how long to take it, but it does seem like a worthwhile drug. By the way, I’ve been in remission 12 months. Hopeful for many more.

• Hi 

1. In  2019 I was diagnosed with stage 3a ovarian carcinosarcoma. Close to 3yrs I was taking lynparza. It didn't affect my quality of life. I am NED. I am Braca1 positive. I noticed that it interacted with a lot of food. My diet  was simple and I had to drink water.
2. Joy