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I have been taking Niraparib for three years after having a first recurrence, succesfully treated with carboplatin.  I do not have a BRCA mutation.  My only notable side effect is constipation, but I have a wonderful naturopath who has helped me manage it.  My oncologist is concerned about the lack of data for women in my situation, which means there is no clear "data-driven" guidance for him to give.  Some women get a secondary cancer (leukemia) when on Niraparib for an extended time, so that is the risk of continuing its use.  They have no way to know if I am "cured" or if the Niraparib is keeping the cancer under control.  There is also no way to know if it will continue to work for me.  Together, we decideed that I would continue to use it, but at a reduced dose.  My oncologist will continue to chat with me every 3 months.  Is anyone else in a similar situation?  If so, I wonder what your oncologist has suggested.  

Brendalee, I'm glad you asked that.  I don't believe I've ever been told.  I will ask my oncologist next appointment.

Brendalee, why are you no longer on Niraparib?  When did you stop using it? 

My understanding is that because the drug is relatively new, there are not enough women who've successfully taken it that long, so the available data is very limited.  I suspect I am not HRD positive as my oncologist is puzzled as to why I'm doing so well on it. 

Hi @KrazyKat, If it is helpful, Ovarian Cancer Canada created a tool that shares more about HRD and includes questions that you can reference during conversations with your healthcare team. You can find it by clicking here. 

If you're interested in learning more about biomarkers and their role in ovarian cancer care - be sure to register for the upcoming Biomarkers webinar on March 25th at 6:30pm ET. You can find more information here. 

Wishing you all the best, Marianne

@mfallis_OCC, thank you for this information.  I will check out the HDR information on the site.  I registered a few days ago for the webinar, and hope to submit a question ahead of time.  I was also considering attending the Patient Day at the Vancouver Conference, but have a calendar conflict.  

Good morning Krazy Kat,

My name is Judith and I have been a member of this group for a little while but haven't posted very much at all. I saw your message and wanted to share my experience and what I know about Niraparib.

I'm going to apologize right off the bat, this is a long post!

I was diagnosed in September 2022, surgery in October 2022, chemo from January -- April 2023, then Niraparib from July 2023 to present. I had HGSOC Stage 3B, BRACA 1 & 2 negative, HRD negative, and i have been NED since October 2022.

I have been on 200mgs of Niraparib from the beginning and remain on that dose. I have tolerated it very well, monthly labs remain excellent, and I will have my 'final' CT Scan at the end of May 2026. I am in Alberta and I have had a wonderful team taking care of me. I am one of the 'lucky' ones who has been able to stay on Niraparib for almost 3 years. It was a game changer for me!

I have spent a lot of time researching Niraparib and HRD as there is new information coming all the time. I have attended virtual webinars, taken part in several online and telephone research projects, and belong to numerous groups. So, here's what I know, I apologize if this is 'old' news!

Niraparib has been approved for use in Canada since 2017. Doctors are starting to see women who have remained NED for 3, 4 or 5 years. It is the PARP that is used for women with no genetic mutations. The main trials are Prima and Solo (more about this later), and as a result of the data they found, the FDA sent out an urgent communication that Niraparib was of no real benefit for progression free survival, and carried more risks than other PARPs. The message was clear ~ stop taking Niraparib. Of note, Canada has not adopted this new protocol.

But, according to the trials data, the women who took a placebo 'faired quite well' during the study, but most went on to have a recurrence after the study ended! How the FDA could come to the conclusion that Niraparib provides little benefit is a huge mystery to me!

Yes, there are two known cancers that pose a risk but it is very low. In the BRACA positive group, it is less than 2 percent. In the negative group, the data suggests 8%. The FDA has been all over the map since I started taking Niraparib in 2023.

For Gynoncs across the country. there is no universal protocol, which is very troubling for both the patient and the doctor. Some women have to stop taking Niraparib due to high level of toxicity or a recurrence. Others can't tolerate the PARP at all, even if the dose is lowered. Some stay on it for 2 years, 3 years, or indefinitely. There seems to be no rhyme or reason out there!

From a webinar with members of the BC Cancer Research team where women who had participated in the study were invited to chat with the medical team, ask questions, spend time in groups with other women who had been or were on Niraparib. It was very well done and I certainly learned a lot!

Here's where it gets very interesting...! Niraparib and HRD status go hand in hand to help Gynoncs decide if they will prescribe Niraparib or not. BUT, the HRD test is very expensive in Canada (+/- $5,000) and currently the only province that pays for the test is Saskatchewan. A lot of people can't afford $5,000 on top of all the expenses associated with having cancer so they don't get the test.

When I had surgery in October 2022, Alberta was not paying for HRD testing and my Gynonc never even mentioned it to me. Fast forward a couple of years, I had been researching Niraparib and HRD and I mentioned it to my Gynonc. She was surprised that I knew about it ("Most women don't know anything about this...")!  Alberta had started to pay for the test again (financed by GSK) so she put an order in to have my tumour tested.

There was a calamity of errors, let me tell you! She got locked out of the site, had to get a new password, and more nonsense. Meanwhile, I was doing very well on Niraparib, not really concerned about my HRD status, just more curious. Eventually, during an office visit, I brought it up and was told I was negative.

So, according to the studies and the FDA's advice, Niraparib should not be working for me! Well, I'm living proof that it is working for me!! So, what's going on??

HRD positive means that your DNA is normal, so cancer cells can repair themselves, meaning that they can stop the cancer cells from growing. The treatment exploits the cancer cells inability to repair DNA effectively, leading to increased cell death. HRD+ status means women are 'more likely' to respond well to PARPs,

HRD negative means that you can't stop the cancer cells from repairing themselves, and you may not benefit 'as much' from PARPs as the drugs were designed for HRD positive status.

According to the trials, Niraparib has more serious side effects than another PARP, Olaparib. Olaparib is one of the PARPS for BRACA positive and HRD positive, and apparently offers 'an improved status for living longer.' Their data pointed out that 'survival is 13 months longer for HRD positive than HRD negative, and only 8% of women who are HRD negative will reach 5 years without progression or recurrence (PRIMA). I call bulls**t !

Here's where things get really confusing for everyone. HRD testing is not 100% accurate as a longevity predictor. It has an up to 18% inconclusive rate. Also, there is a 'score' given; 42 and up is HRD+, 42 and less is HRD negative.

For women who get OC, 25% are BRACA positive, while a whopping 75% are BRACA negative. If it's true that most provinces aren't paying for HRD testing, how can your doctor decide which treatment option is the best for you? It's no wonder everyone is confused!

My final thoughts to you Kat and others (if anyone is still reading LOL!) is to inquire about your HRD status. This could help your Gynonc make a decision about the best treatment plan. If I had the choice to continue on Niraparib past the 3 years (recommended by the manufacturer) I would have to have a deep discussion with myself. Earlier in my treatment, I thought I could stay on it forever, and continue to manage the fatigue and gut issues. My doctor told me a year ago that she doesn't do scans past the 4 year mark. She gave me enough time to absorb the information and really think about it. I asked her, "Am I just going to be released into the wild to fend for myself?" She assured me that I could always call her or book an appointment if I had symptoms. I told her, "I didn't have any symptoms when I woke up one day with Stage 3B Ovarian Cancer!" 

To answer the question if Niraparib is keeping you cancer free, my opinion is that it is. Do you know your HRD status? In my case, being HRD negative, I certainly think Niraparib is the game changer for me.

Anyway, I'm sure I've gone off track a lot, and have been overly 'clinical'. I'm actually a very funny gal :) I hope this information is helpful to you and your doctor, Kat. I also hope I don't get booted out of the group for standing on my soapbox about the complicated relationship of Niraparib and HRD!

Judith

@brendalee I like you would love to see new studies done, both on Niraparib and Olaparib. I'm on Olaparib and from what was explained to me by my oncologist, the risk of secondary cancers (acute myeloid leukemia) occurred in less than 1.5% of patients. Some cases did appear for longer term usage (>2years) but it was still less than 2%. 😗 I can't speak to any data relative to Niraparib as it was not part of my treatment path (I'm BRCA2+).

I am aware of a small study done in 2025. I'm going to see if I can find and share that data in a separate post.

#Treatmentandsideeffects

#Treatmentandsideeffects 

@brendalee and @KrazyKat here is the one pager I have from a Gynecologic Cancer InterGroup collaboration looking at the long term outcomes of PARBi's. This study looked at both Olaparib and Niraparib users (my understanding is the focus was on those who took it after their first recurrence however my interpretation could be incorrect). It was presented at the ESMO Congress 2025 (a premier global oncology platform bringing together clinicians, researchers, patient advocates, journalists, and healthcare industry representatives from around the world). I learned of it via a Lynparza/Olaparib FaceBook page I belong to. Of interest to note is that the British Colombia Cancer Agency (Canada) was a participant.

I'm sorry that it's a picture which means it's a bit tough to read but if you open and enlarge it, you should be able to read it. It's the only "recent" information I can find regarding long term use of Parbi's. My "non-medical interpretation" of the results is that long term PARBi has supported Progression Free Survival (PFS) more often than not and the incidence of developing secondary blood cancer was extremely low. My caution again is that this is my interpretation and I am not a clinician, doctor nor do I have any scientific background to truly validate this data. I'm just going by my layperson understanding of the study conclusions.

#Clinicaltrialsandresearch

@brendalee yes apologies for it being hard to read. I'm checking to see if there is a way I can upload a PDF of the document vs JPEG which I believe will make it easier to read.

in the "Baseline Demographics" section (top right) it says there were 297 "eligible" patients so I'll assume that's how many were in the study. It's a small group but it's data (from my simple perspective 😊). In the same section it also says that 222 (75%) were Olaparib, 57 (19%) were Niraparib. The remainder were other PARBi's. As for non BRCA1/2, the data section also says 34 participants were "unknown" so the majority were definitely BRCA1/2.

In the "Background and Methods" section (top left) it says, "We defined ExR (Exceptional Responders) as patients who remained alive and progression free after ≥5 years of maintenance PARPi). The study focused on patients who were disease-free for 5+ years while on PARP inhibitors.

I think that captures most of your questions. If I can't get a PDF posted, I will take pictures of half of the page and then the other half and post. That will enable me to increase the picture size and hopefully make it easier for others to read.

Here is a link I found to the study...

https://www.annalsofoncology.org/article/S0923-7534(25)02635-3/fulltext

#Clinicaltrialsandresearch

@Alwayslearning, thank you so much for sharing this!  The URL got me to the online article and the PDF.  This sounds like the information my oncologist has  been sharing with me.  While this study is encouraging, I'm less well represented here as I'm on Niraparib (more Olaparib patients in the study) and I do not have a BRCA mutation.  I'm a mystery, lol!  It does reinforce why our oncologists are unclear on what to recommend.  As I tolerate Niraparib well, I'm betting on staying on it (at least for now) being my safest option.  I'm so glad my oncologist wants to check in with me every 3 months!  Maybe he knows of other studies that are currently being done, with more data to come.  I'll ask if there are any I can be a part of.  I also plan to ask if there is any other testing that might be helpful in charting my course.  If I learn anything during my next chat with him, I will share.  

Have a great day everyone, I'm off to count my blessings . . . . .

@brendalee, I guess I got the abstract.  I clicked on the PDF, which I found easier to read.  It gave me enough information.  

@KrazyKat well being mysterious can be exciting 😁 I appreciate anything you are willing to share following your chat with your oncologist. Stay well!

#Clinicaltrialsandresearch

@brendalee and @Judith, thank you so much for joining this discussion!  Judith, you have provided a lot of valuable information.  I will respond in the next day or two and add more information about my situation.

Brendalee, are you in Saskatchewan?  I'm so sorry that you were taken off Niraparib and had a recurrence.  The lack of data that can be used to direct treatment is extremely frustrating.  I assume this recurrence is quite recent.  Have you started treatment?  If so, I'm curious to know what it is.  Thanks!

@Judith thank you for sharing all of the information you've gathered. Knowledge is power to this group and so I thank you. I don't think you stood on a soapbox by the way...I feel you shared your perspective from what you've learned through your journey. There are so many hoops, hurdles, inconsistencies, data and lack of data etc. that the more we know and share, the better I hope we all will be in managing our personal circumstances. We are all allowed our own opinions, especially as it relates to the road we have travelled.

I'm on Olaparib and have been doing a lot of reading and research as well. Sadly, the inconsistencies relative to it's use, length of time for use etc. as wildly inconsistent which is distressing. It's like we have to do a bunch of personal research and build a case for ourselves on what we feel is best and then hope our oncologist will support that. Over the next few months I'm going to be gathering as much data as I can, to better understand what the 'buzz' is relative to Olaparib. I belong to a Facebook group that's global and there's some interesting information out there.

Thank you so much for sharing!! I personally appreciate it. 🩵

#Treatmentandsideeffects

Hello @Judith and all others following this thread.  Judith, you provided a lot of information, for which I am very grateful.  I'm going to provide more information about my situation, and I have some questions for you.

My OC journey began the end of May, 2018, when I noticed that I had a very small amount of vaginal bleeding.  That lead to having a transvaginal untrasound, followed by surgery in July 2018.  My oncologist in Victoria (I live in Nanaimo) was a huge proponent of IP chemo.  If you have been diagnosed more recently you've likely not heard of it as the data did not end up supporting it as being more effective, hence, it's been discontinued, at least around here.  It was a much tougher route to go, for several reasons, but I won't get into that now.  It did require an additional surgery to place a port on my ribcage with a catheter to the peritonium, and at the same time, they "had a look around" because my debulking surgery had not been done by one of only 2 gyne-oncologists on the island.  Turned out my gynecologist had done an amazing job, laproscopically to boot!  Phew!!

At that time, Olaparib was available, but only to those with a (genetic) BRCA mutation, which I do not have.  Niraparib had not yet been approved in Canada.  So after a very long recovery from chemo, which really affected my legs, especially my arthritic knees, I carried on with life, telling myself that I'd been "cured", as I was treated with "curative intent".  My cancer was HGSOC, Stage 2C. I convinced myself being stage 2 improved my odds, though there was apparently no "data" to concur with that. 

In November of 2021 my CA125 had gone up, indicating a possible/likely recurrance.  My gynecologist who was providing my surveillance (I was no longer with the cancer agency) said I could have a CT scan or go ahead with our planned holiday, as there would be no urgency to proceed with treatment.  Boy, that's a tough one to get your head around!!  We decided to go ahead with our extended holiday, but boy did I worry!  Had the CT scan when we returned then went ahead with chemo July- Dec 2022.  My previous oncologist was no longer on the island and I was assigned to a locum from the UK.  She was a lovely lady, appeared to be near the end of her career.  A day or 2 before my 5th round of chemo, I got a phone call from the Cancer Clinic, just as I was coming off the golf course with friends.   It was my new oncologist, as the locum had gone back to the UK.  His impression of how I was doing was completely different from hers.  She was going to add another chemo drug and an extra cycle or two of chemo.  He (new oncologist) said, after consultation with the other oncologists, that I did not need either of those, I was doing extremely well on just the carboplatin, and he also wanted to put me on Niraparib.  They all disagreed with her take on things. (I was surprised he actually shared that with me.)   And he wanted to order testing for a somatic BRCA mutation, which I'd never heard of before.  As we've all been told, PARPs are more effective if you have it, genetic or somatic.  (Turns out I don't have it either.)  Wow, my head was spinning!!  I was thrilled by all of this news and couldn't wait to get to coffee with my friends to spill all of this.  In all of my excitement I told them I had a new, young, handsome oncologist.  They couldn't figure out how I got all of that, especially the "handsome" part from a phone conversation, lol!

So I differ form many of you, as I did not have a PARP with first-line treatment, but following my second round of treatment.  There is even less available data for my group.  My wonderful new oncologist started me at 100 mg for a month, then as that went well, I went to 200 mg.  He said he would not put me on 300 mg as he'd never had a patient succeed at that dosage.  I have tolerated it well, main compaint is constipation, which is manageable.  Since being on Niraparib I've had 2 pauses, a 6 week pause Spring of 2024 for right knee replacement, then a recent 7 week pause for my left knee replacement.  (There's another story - I've heard some surgeons would have refused my surgery due to having ovarian cancer. . . . . .) 

I spoke with my oncologist a couple of weeks ago, having been on Niraparib for 3 years.  Together we decided, based on the nearly nonexistent data, that I would continue on Niraparib for now, at the lower dose of 100 mg, and he will talk to me every 3 months. There's only a very small group of women in my situation and he is very uncomfortable with the lack of data to make an informed decision.  Oncologists are (I find) very data driven, so this has him totally out of his comfort zone. Uh, ya, me too!!  He has one other patient in a similar situation, doing beautifully on Niraparib for 6 years, cancer free, and happy to continue taking it.  He has a patient on Olaparib who discontinued it 2 years ago and remains cancer free.  I think she was BRCA positive, so more data to refer to.  

Judith, you mentioned having an upcoming "final CT scan".  Have you been having them regularly?  I have not, they only use my CA125 as a guide.  My oncologist did ask if I wanted one a while ago, but I said no, I saw no need for it.

You also mentioned that the FDA has kiboshed the use of Niraparib.  Wow, thank you Health Canada for not following their lead!!  I'm in the same (small) club as you, a women who is successful on Niraparib, yet the available data suggests I shouldn't be.  I thank my oncologist every time I speak with him, for coming to Victoria when I really needed him!  As one of you mentioned, not all oncologists are proponents of Niraparib.  

Judith, you also mentioned a webinar with members of the BC Cancer Research Team.  Do you know if it is still available to access?  Which study were the participating women a part of?  I would be very interested in seeing the webinar if available.  I'm also curious about the other virtual webinars, research projects, and other groups you've participated in.

I will definitely be asking my oncologist about HRD testing, though I'm not sure that it would change my treatment.  Is there an option for someone like me, who has remained NED on Niraparib? Right now, I'm going forward with the same attitude I had before, that I'm cancer free.  I just want to get on with life, forge ahead into this "uncharted territory"!  

Judith, will you be given the option to continue Niraparib past the 3 year mark?  Does Alberta continue to cover it beyond 3 years?

Sorry if I've lost all or some of you by now with my rambling . . . .   I wish all of you the very best on your life journey :-)

@KrazyKat thank you for sharing your journey, learnings etc. What a pathway you've had. So many of us have crazy twists and turns which when we are dealing with cancer, seem quite unfair to have to navigate. It sounds like you have now landed with an great oncologist who is willing to focus on the patient and her needs/wants/wishes vs. prescribing to a standard that may/may not truly reflect reality.

Please keep us connected with your journey and learnings. As you can tell, it's a topic that's definitely resonating with others. 

Be well!!

#Supportandencouragement

Thank you @Alwayslearning.  Yes, I have been blessed throughout this journey to always have the right oncologist at the right time.  My current oncologist is amazing - totally down-to-earth.  He really listens and responds like a real person, not a data-driven "god".  

Hi @KrazyKat I wanted to let you know that when I was diagnosed in February, 2024 my oncologist at Princess Margaret Hospital in Ontario had also started my chemo journey with an IP as she wanted me to have Paclitaxel and Cisplatin. For those who aren't aware, Cisplatin cannot be delivered intravenously. It has to be delivered through an IP (intra peritoneal port). I had over 6 very large tumours at the time of my diagnosis and her goal, post my surgery, was to flood my abdomen with the chemo. Unfortunately (or perhaps fortunately, I'll never really know), the IP she inserted during my surgery, failed. My abdomen was so inflamed from the surgery (I have a scar from just under my boobs to below my pubic bone so was pretty much opened up), that I was in excruciating pain and they had to remove the device. The catheter portion had moved toward my diaphragm and was nestled against it. It was causing debilitating pain in my left shoulder. So after that one was removed, they tried to place another one in but on the other side (a lovely additional procedure with a interventional radiologist). Within hours it too failed and had be to removed. So, I was defaulted to Pac and Carboplatin. 

I definitely understand the additional hurdles the Cisplatin resulted in e.g., I was told I had to have a nurse visit me every day for 3-4 days post the infusion to do a few hours of I/V liquid infusion as the Cisplatin was so toxic. 

The fact that you made it through that treatment is amazing so my hats off to you. 🙌

I'm not aware of many who have gone through Cisplatin infusions however I do recall a few Teal Sisters on this site mentioning it. Regardless, I think some oncologists still use it although my sense is that it's done sparingly as it is so very tough on your system. 

#Treatmentandsideeffects

Hello @Alwayslearning.  Thanks for your response.  You certainly have been put through the ringer!!

Though I had IP chemo, my situation was quite different from yours.  I had Paclitaxel and Carboplatin, fortunately no Cisplatin.  On day one of each cycle, I had Paclitaxel via IV in the mornings, followed by Carboplatin via IP in the afternoon.  It was 9 hours in the chemo lounge.  Day 8 was easier with just Paclitaxel IP, about a 5 hour day.  After my 2nd cycle, my white blood count did not recover.  My oncologist was away, and I don't think anyone else wanted to decide what to do.  Fortunately when my oncologist returned, she got special authority for me to go on Filgastrim to raise my WBC.  I was a bit frantic by then, after a 3 or 4 week delay.  Apparently there was some contraversy aound how to proceed, some oncologists would have stopped my chemo at that point (or stopped the IP delivery?)  Also, my platelets always needed extra time to recover, so the 3 week chemo cycles got extended to four week cycles, with 2 week breaks rather then 1 week.  I'm very thankful to have had the oncologist I had at the time.  This is one of many times on this journey that I've felt there is someone looking out for me :-)

The port and catheter was a painful experience, though nothing compared to what you went through, Alwayslearning.  I had more pain following the surgery for placement than I had following my "big" surgery.  When all cycles of chemo were completed, it was a few weeks before it was removed due to unavailability of a room at the hospital.  When it did come out, I nearly passed out.  And throughout all of this 6 or 7 months with it inserted, I was afraid to do any kind of exercise for fear of displacing the port/catheter.  Even yoga was not recommended.  

I was warned ahead of time that side effects would be worse with IP chemo, though my oncoloigst convinced me the better outcome made it worthwhile.  I found ways to cope includihg Reiki treatments to calm me and hot stone massages to relieve leg pain.  I ended up with permanent neuropathy in my feet, though it has decreased over time.  

Sorry, again I went on for longer than I meant to . . . . 

@KrazyKat ... well I was not aware that they did Carbo treatment via an IP. See...once again I'm learning, but ugh, what a process you went through. I could not even imagine having the IP in for 6 months.  

I also had my WBC's and neutrophils crash out during my chemo. It happened around the 3rd infusion so I had to self inject for each of my remaining six infusions with Lapelga to boost my WBC's. I kept notes of my side effects after all my infusions, including with the addition of Lapelga and I know that it resulted in tremendous bone aches within 3 hours of the injection and for the remaining few days. Then it disappeared. So very weird but it certainly helped boost my WBCs so yeah. I am so sorry you ended up with permanent neuropathy. I hope that will continue to dissipate through time.

Those who have not walked our paths do not have a clue as to what each of us have endured throughout our journey's. I'm so thankful for this community...for women who understand what we've gone through, who can share, who can commiserate and who completely understand. 🩵

#Supportandencouragement