I've been diagnosed and operated in April 21 with Stage 3 Ov cancer. Chemo (6 cycles) finished with Ca-125 around 4 now. My oncologist recommended niraparib. I'm BRCA negative and my HRD is positive but very loow (5.3%). Some doctors say, I'd not benefit from niraparib. Want to feel confident to start on niraparib. Really appreciate your experiences if you have similarity and on niraparib.
Wish you all healthy days...
My understanding is that there is some benefit regardless of BRCA or HRD status, women with BRCA mutation or HRD positive potentially get more benefit. There are potential side effects with Parp inhibitors and sometimes we do need to do cost/benefit analysis.
Can you explain what the 5.3% means? My doctor only told me that I am HRD positive but did not specify the degree of this deficiency.
Check out this post if you are interested.
Best wishes
ascopost.com/issues/septemb...
Thanks very much for including link to the more recent 2019 study. I found it more encouraging for BRACA negative folks than some of the older studies. I intend to take a second look at genetic testing to see what my HRD status is. Best wishes from Louisiana,
Sashay
Thanks a lot for the link Liz. The post says: Patients could have any BRCA mutation status and any HRD status, according to the Myriad Genetics myChoice HRD assay (HRD score ≥ 42 for positive). What I understand if you have a HRD score equal or more than 42, you are considered as positive in the study. My LoH score 5.3 which is used in calculation for HRD; I will ask my oncologists today for clarification.
Forgot to mention I am BRCA negative, HRD positive, and have been on niraprib for about 4 months now.
Hi Sybil,I’m brca neg, without the HRD deficiency and have been on niraparib 200 mg since late April.
Doing ok so far on this dose. I’ve had 2 recurrences to date. I feel well, constipation is my main issue but manageable .I can get out and about - walk 5 k each day , appetite ok, a bit of nausea at the start but that has settled . I’m grateful to be offered this drug . If you are HRD positive you may do better than me. Best of luck with it and i wish you well.
Kind regards,
D
Hi Dollie, Thanks for your reply. Glad to hear you are doing fine with niraparib. Did you have a debulking surgery before niraparib? Best regards; Sybil
Hi Sybil, Yes, I’ve had 3 surgeries. No residual disease after each one . 3 lots of chemo, and one year of avastin. Best of luck with your treatment . If you have the HRD deficiency you may do well on niraparib.
D
Hi Sybil
I was diagnosed 3CHGOC in March 2016; usual frontline treatment and surgery. Recurred in 2017, further surgery and chemo. Commenced on Niraparib in June 2018 and still on it. Usual side effects, insomnia etc. My latest scan in late August was clear, I’m BRCA neg. Don’t know my HRD status and don’t much care, treatment would be the same I’m sure. It’s working for me so far and well worth the side effects which do lessen over time.
I would go for it and I wish you the best.
Kay
Hi Sybil, I am also BRCA negative and have been on 100 mgs. of niraparib since July of 2020. They reduced my dose from 200 to 100 mgs., because it was too hard on me. I feel fine, except I took a few breaks for a week off and then start again to build up my blood. I seem to be doing alright, except for some constipation. I would go for it and wish you the best, Donna U.S.
Hi Pianoplayer, thanks a lot for your reply. May I ask if you started niraparib right after your surgery? I'm trying to understand if it is generally used after recurrence or as a maintance therapy after complete response to first surgery and chemo.
Hi, I had 3 chemo treatments, major surgery and 4 more chemos in that order. My scan showed NED and I started the niraparib as a maintenance therapy about 6 weeks later. My latest scan was good so far. I have a few side effects, but that is normal. Donna
They like to start this therapy within 6 weeks after the last chemo.
Hi Sybil I too am BRAC negative. I started Niraparib March 2021. Reduced from 200mg to 100mg. On the lower dose I feel fine, able to get on with my life. Unfortunately in june my CA125 started to rise. So had a CT scan September 4th & meeting my consultant 13th. Its definitely worth trying. Best of luck, Tracy N.Ireland
Hi Grankids; thanks a lot for your reply. I wish you all the best with the CT results. I had my CT scan yesterday, I'm meeting with my oncologist today, fingers crossed. May I ask if you had started niraparib after surgery and chemo? Generally, I read patients taking niraparib after recurrences, so I'm trying to understand if this is common or are there any patients like me starting niraparib after first debulking surgery and 6 cycles of chemo finished with low CA125 etc.
I was diagnosed in October 2020, the usual course of treatment: surgery and 6 cycles of chemo completed at end of March 2021, started niraparib (Zejula) in May as a frontline maintenance therapy. Zejula was only approved for frontline maintenance in 2020 by FDA, previously it was approved in recurrence setting in the US. Currently parp inhibitors are only supposed to be used once, so I wanted to know when I will get the most benefit: as frontline maintenance or after recurrence. My oncologist said you get the “most bang for your buck” after completing frontline treatment, as my body had not developed resistance to drugs. But honestly doctors don’t know for sure how effective the drug will be or what side effects each woman will suffer, what they know is just the findings from clinical trials. So at end of the day, we all have to make our own decision. My take is if I can avoid recurrence for as long as possible, hopefully two things will happen if there is a recurrence down the road 1) my body can better tolerate the next round of treatment whatever that is 2) maybe something new will come out of clinical trials, hopefully.
Best wishes to you!
Hi I started Niraparib after 1st line of 6chemo & debulking surgery. Last chemo End of January 21 then started Niraparib March 21 x
Hello Sybil. I have been on Niraparib for 32 months now! I still feel well and have my CA125 Checked every 3 months. There are a few side effects which I manage. I was BACA negative too. Diagnosed in 2013 with Stage 3c.
Hi Winks.It's very encouraging to hear you are doing so well on Niraparib. I started it in June this year. At first I had awful nausea but it settled in about 5 weeks. In August my haemoglobin dropped quite dramatically over a few days and I had a transfusion. Since then this same pattern has occurred three times and I'm getting nowhere wot my consultant. It's very frustrating and I really don't want to have to stop the drug as I don't know what else is available.
Tks for reading this. Feeling a bit desperate at the moment.
SO sorry to read about your low haemoglobin. Not sure what causes that. I think it is one of the side effects listed on the patient information leaflet that comes with Niraparib. There are other drugs I believe but I suppose you have to trust what your consultant is telling you. Have you asked about alternative treatments? You haven't been on Niraparib for very long. Poor you. Wishing you success in finding an alternative. I believe Niraparib is offered at first line treatment to most women with ovarian cancer.
Thank you for getting back to me so soon. I spoke to a consultant today and feel a lot better now. She isn't my oncologist but she is a palliative care consultant. She gave me reassurance which I really needed. She feels that the anemia should be able to be managed and that I shouldn't give up on Niraparib yet. It's so important to get reassurance from people you know care.
I wish you continued good health and success with your treatment.
Tks again
Ann
Ca125 up on Niraparib
Trial with Niraparib and Avastin 
Niraparib problems. 
Polyphagia
Niraparib and peripheral neuropathy
