I was diagnosed with 3C O.C and almost at the end of carbo taxol.
My tumour is HRD negative and I am Braca negative. My Oncologist said that I can go on Niraparib but that there would be limited benefit as there is no genetic component to my cancer. I am undecided what to do. Is anyone else having good results from Niraparib who hare HRD and Braca negative?
Thank you
Julie x
Am same as you only 4C, but my team and oncologist never ever said anything there be no or limited benefit from Niraparib...Actually the opposite - they strongly advised me to take it and were glad am excepted it. You made me worried now that they just giving it to us as placebo ???
Thank you for replying. I am so sorry didn’t mean to make you worry. I think your oncology team are right and my Oncologist is wrong which is why I ask the question. My Oncologist is lovely but seems very negative for some reason. I have now asked her for the statistics. I am sure that your Oncologist wouldn’t put you on something that they didn’t think was beneficial. xxxx
Its good but please do not even believe much in the statistics xx Niraparib is settled in me more or less after 8 weeks . Still can not believe your doctor could say that without offering alternatives . Results will varied from person to person. But I've red lots of long time survivors on this side on Niraparib and other parbs. Better take it in the mornings . All the best darling xx
Thank you xxx
I have been on Niraparib since December 2018. I was BRAC neg and was stage 3c when diagnosed in 2013. I have had three operations and 3 sessions of chemo. SO grateful to be having Niraparib, as it clearly works for me. A few side effects which I can tolerate. Hope it works for you. Best taken in the morning as it does cause some insomnia.
Oh Winks 3 operations?! BUT YOU ARE A SURVIVOR ! are you on 300 or 200? xx
200mg per day - best taken in the mornings. Amongst adverse effects I need to be very careful of the sun - not a problem in the winter!
Three ops - I have had one and expecting to have a second after some chemo. Most people on here seem to have one op and team seem to know more what to expect inside than they did for my first op. I was disappointed with outcome on waking up.
No there lots of people on here had 2- 3 ops. I was demanding my second one last month when they said I recurred first time. But they said NO not now ,its too small and its too far o reach do chemo first....
That is brilliant news that it has worked well for you. It certainly makes me feel like I should just take it. Thank you and all the best xx
Hi Winks, many thanks for sharing. Did your doctor say anything about how long you can take it? My mother's oncologist advised her to take it for 2 years and I was wondering if she can take it for a longer period and whether it would be beneficial.
Hello SummerBreeze. I am sorry to hear about our Mother's diagnosis. I can only speak for myself and the advice I have had from my oologist. I have been on Niraparib since Dec 2018 and I have a blood test every three months to check my CA125 and any adverse effect on other organs. So I have been taking it for 3 years and 3 months and is still working for me - for which I am very grateful. When got covid recently I had to stop my medication as Niraparib does affect my immune system. But back on it now and although there are some side effects eg adverse reaction to sunshine, some insomnia, avoid caffeine and alcohol which seems to make my heart race I am well.Hope this helps.
Thank you so much for your kind and detailed reply. So glad to hear that Niraparib keeps working for you! I hope it will be the case for my mom too. So far, she's been on it for 16 months and the results are good. Did your doctor advise you to keep taking it as long as needed and there's no need to discontinue it?
As the medication is still knocking out the ovarian cancer cells which are still around I think, there has been no mention of stopping. Is your mum monitored regularly? Hope so.
Yes, she is, also around every 3 months and the results are good. Really glad to know that Niraparib works so well for you. Thank you so much for sharing your experience xx
Hi HelvelynI’m High Grade Stage 4, diagnosed in 2016. I’m Barca negative, but haven’t been tested for HRD. After Chemo, Surgery & more Chemo, I was prescribed Niraparib in May 2019. I’m very happy to say it’s still working!
My very best wishes for your treatment.
That’s good you are doing well. Do you have many side effects?x
I started Niraparib 300ml mid October for 3 weeks . Then complain to my team that its affected my sleep and and made me tearful ( i was suddenly started crying a lot , and never really cried after the diagnose, after op and during chemo ) I don't know may be Niraparib has nothing to do with me crying )) but my oncologist agreed to give me a week break and low the dosage to 200ml After the break and lower dose my crying stopped and sleep got better. But after 3 weeks again I got intestinal blockage, severe pain, vomits and got to hospital for 2 weeks. Blockage was caused by fiber food i was eating large quantity and "hinges" caused by operation which started to collect food and created blockage over time. During the hospital stay I was on lots of other drugs and Niraparib stopped. And only started again week after I got back home and seen my team. For about 2-3 weeks had pains on my sides, back, hip and muscles , but after its eased . So now am taking IT for 2.5 month and side effect are minimum I would say.....most of the time feeling fine and buzzing, sometimes some kind of bearable aches and pains in different part of the body and mild headache when waking up in the morning. No fatigue but tired in the evenings but that could be because I just turned 60 )) So so far is like that ))
I got back to work part time ( easy job )) Helps to feel somewhat normal and see people again )) xx
Crikey those symptoms seem worse than being on carbo/taxol. I don’t know will have to think about what to do xx
NOOOO ! May be I made it sound like that but noo it is nothing like Carbo/Taxol ! Its all individual but nowhere near chemo side effects. My oncologist told me its nothing like chemo its easier and I can confirm its nothing like chemo. Its just needed time to settle. Don't be scared its definitely bearable and hopefully worth taking ))
😊 oh ok…that makes me feel better. xxxx
I bet it was the Niraparib that made you weepy. When I was on 300mg I cried all. the. time. I didn't cry that much during frontline, after surgery, even after a recurrence. My dose has been lowered and the floodgates have closed ;).
Hi FloraI have also been diagnosed with braca negative high grade serous oc (stage 3C) but my oncologist hasn’t given me niraparib yet. I am getting Avastin and a daily chemo pill of cyclophosphamide (cytoxan) but my CA 125 keeps rising. I think he will start me on niraparib at some point. I was diagnosed in the spring of 2021 had chemo-surgery-chemo but still have cancer that the surgeon couldn’t get. I’m glad there are more tricks in his bag because nothing seems to be working. I am curious how these doctors differentiate between stage 3C and stage 4. It’s amazing how many forms this disease takes on. Thanks for your post
Joan (Cher96)
Yes this disease doesn’t seem to follow many rules…it seems to be quite random x
I think I can tell you how they deciding stages. When she told me month after op when my results came back am 4C , I was shocked and asked why not 3 !? Before they cut me open they even predict stage 2 -3 but when they cut me they found that from ovary's its spread to my diaphragm 5sm tumor and little one 5 mm zap on liver. Instead of 4 hr op they worked on me for 7 hr because it was very tricky to get tumor of diaphragm and repair it after. They got out all visible and were very happy )) She said because its was so high up in the body and spread to more that 1 extra organ they giving stage 4 . There is also some diagrams on YouTube I v seen how they deciding stages.
Thanks for the info. I will check YouTube. I think by what you are saying, it might have to do with the size of the tumor. I have several small nodules on my intestine area but he couldn’t get them all, whereas you have a 5 cm tumor. 🤷♀️
I had 2 tumors. One was in my right ovary obviously that's why its OC. That one was size of the tangerine he said, then 5 sm on the diaphragm and 5 mm on the liver nearby. I had no trouble living with it that why like most of us here it was undetected for so long.....I actually got myself healthy year before Covid . Went on healthy diet, exercised seriously every day, lost 2 st in 6 month, was fit and happy bunny like never before.. )))
Hmm, sounds similar to me, healthy diet, exercising, lost two stones with SW but actually ill on inside, sand grains at moment two places you mentioned and starting carbo taxol soon.
I cant have Carbo Taxol if I recurred 6 month after. Platinum resistant. Now its Caelyx for me.
SO sorry to read this.
That's OK. I don't feel sorry for myself much....not yet anyway )))
Hi Flora3, I’m also on Niraparib. I started at 200mg dose but it had terrible side effects including severe anemia. I took a break and am now on 100 mg for two months now. Feeling very well overall. I’m wondering what dose you are on. I’m 56kg and 5ft 2!. It’s very encouraging to see that you are doing so well. Long may it continue. Ann
Hi SeedlingsI started on 300g, but, after 3 months, reduced to 200g, as I was needing blood transfusions every few weeks! I’m 5ft 6, & weigh 53kg. I had about 10 days break from Niraparib last year, when I needed a tooth extraction. That really worried me, but I remained stable, and have been ‘No (visible) Evidence of Disease’ for some while now. (There had been a tiny suspicion of something abnormal after my last chemotherapy).Wishing you success with your treatment
Tks Flora,I'm so glad that you are stable. That's all we want. Tks for getting back to me. I think we need to keep reminding ourselves that everyone is different. Best wishes.
Ann
Hardly any. I often have a headache 1st thing, but it usually goes when I get up. I think I get a bit more anxious than I used to, and don’t sleep so well, but who knows if that’s due to the Niraparib. In the 1st few months, I had to have blood transfusions, but reducing my medication to 200g soon sorted that out. Hope you’ll be ok too.
Yes I agree - headache 1st thing then it goes when up . But not even every morning / probably 2- 3 times a week i noticed. Am anxious too but i think I v been anxious since the diagnose ))
Thank you. Maybe I should just take it and try x
Do you like walking Helvelyn? Walks helps all side effects. Every day no matter what weather apart from heavy rain ofcourse ))
Yes I do like walking. Get really breathless walking uphill now though. Don’t know if that is because of chemotherapy or just because I have become unfit. x
both i think )) but during chemo I was breathless uphills too and not so fit as before op
Hi Helvelyn, I get short of breath also when walking too fast or going up hill also. I believe our medicine causes this, because it is one of the side effects. I don’t think that we are ever the same when we are on these drugs. I try and take things slower, just because I had a blood transfusion a little over a year ago from low hemoglobin. I’ve learned to not push myself too much and take a break once in awhile. Best wishes, Donna
Hi Helvelyn, I am also negative for the braca gene and am doing well with18 months so far. I was stage 3/4 and my CT scans are looking good, so niraparib must be holding the cancer back. I don’t know how long I will be on it, but I believe you should probably try it. My dose was lowered from 200 mgs. to 100 , because of my blood numbers. Hope things go well with you, Donna
My Oncologist said 100ml is too little . But I v heard that it depends on height and weight of the person. Am 5.7 and 85 kg, so 200 is OK for me but to starts with they gave me 300 which is was too much first weeks after all that chemo . But now I think may be even 300 would settle fine after a while?
Hi, I am 5.7 1/2 and about 135 to 140 lbs. The dr. looks at the blood work and determines what our dose should be. They also want to know if you are having some bad side effects. They don’t want the drug to harm our good cells and organs. It’s a fine balance in keeping the cancer away and not doing harm. I have had some side effects like shortness of breath and some fatigue with this dose. I had a blood transfusion just over a year ago, because of my hemoglobin being too low. I just have to make sure that I get enough rest. Hope you do alright with whatever dose your dr. decides on. Best wishes, Donna
I v heard that first they look at the body weight and that when they give you 300, 200 or 100, then after they checking blood to see how we are. And then reducing if needed. That what my case. They were saying my blood on 300 was good, but i still asked to be reduced to 100. She said no 100 is nothing to you its too little but agreed to give 200. May be now i would be even OK on 300 I dono/ May be I moaned and complained too early/ will see what they gona say 3 of Feb on my monthly check )) xx
I hope that Feb. 3 will give you some more information on your dose. I always have to fill out a paper about side effects before my dr.’s visit. I live in the U.S. Best wishes
Hi, I forgot to mention that my dr. did say that they look at our weight also.
The thought of having increased anxiety worries me but I might be fine on it. I’ve just got to try and see really xxx
I was anxious to start chemo, have major surgery and more chemo. I figured that if I could get through all of this, it would be worth it to try niraparib. I was anxious also, because all of these treatments are very powerful drugs. It’s just normal to feel that way. If you have anxiety or panic attacks, you could reach out to palliative care. These people could help you through your fears. Sending my best wishes and a hug from the US. Donna
Thank you Donna xUt seems that it is effective.
Hello JulieI too am braca negative (not sure about hrd) i took niraparib fir 1 year after my recurrence, i stopped it with my oncologist blessing as the side effects for me were too bad, however i am still clear 3 years later (so 4 since recurrence) and i think it has helped, from my point of view there was nothing to lose trying it and i don’t regret that decision. Good luck in your journey. Yes the stats only showed limited benefit for some women who were braca negative, but that also means that for some it worked and who knows which one we are!
Love
Diane
Wow that is amazing that you are still stable. I guess it is worth trying. Part of me just wants to feel normal for a while after chemotherapy and not take anything x
I know what you mean and yes i just had a scan and i am clear still, i do feel that year on it helped. The point is you can always choose to stop if you dont get on with it, but you cant choose to start it once your past the window of opportunity after chemo. It was a hard decision to stop and I wondered if i would regret it, but i have just been lucky. I know lots of ladies who take it with little side effects x its luck of the draw as with most things with this cancer xxDiane
Hello, it’s so hard to know what’s the best advice to listen to when oncologists seem to say different things and everyone’s experience seems to be different.For me I too am BRACA negative and diagnosed in 2020 with stage 3/4 Ovarian cancer. Had 3 rounds of chemo to shrink the tumours followed by surgery and then 3 further rounds. Surgeon was happy he had removed everything visible to the naked eye and was put on Niraparib, which was at this stage on the verge of being approved by NICE.
I was told maximum I could be on it was 18 months due to possible long term side effects, however reading some of the replies others have been on it for considerably longer.
I was happy to go on it as there wasn’t an alternative and anything is better than nothing coupled with the fantastic reviews given by my oncologist. However my CA125 was increasing slowly every month despite being on the drug and after 11 months it was high enough for the oncologist to request a scan which unfortunately showed the cancer had returned.
When I questioned why had it returned if the Niraparib is meant to be so good, I was told by the same oncologist that the average before cancer returns whilst being on the drug is 9 months and it’s not the wonder drug everyone thinks it is !!!!!
Would my cancer have come back sooner without it, I don’t know. Did it slow the cancer down to allow enough time for me to go back on Carboplatin with Caelyx this time, I don’t know.
My advice is to go on it and be positive. I had no side effects and as there are no alternatives grab it with both hands, you may be one of the lucky ones like others on this forum that have been and still are on it. Often wonder if things would be different in the private sector.
Very best of luck in making your decision and good luck with your journey. Xx
Thank you for your reply. I’m sorry that you reoccurred. Will you be offered Avastin?
Apparently not as have already had Niraparib. I was told when my 6 cycles of chemo finishes there is nothing else available, it’s a case of waiting to see when it reoccurs again and then more chemo. Its’s hard to believe there is nothing else out there. Xx
It’s so confusing when and what they offer. I can’t have avastin as the surgeon felt he got all visable tumour. I therefore felt that I would be offered it if it reoccurred. Does having Niraparib then mean you won’t be offered Avastin?x
Just because he got the "visible" tumor does not mean little bits which he cant see are floating around in your blood stream.........or so microscopic that he couldn't see it. I would maybe think about second opinion. It is your health that is at stake. We want the most time with the best quality!hugs
Debbie
One woman I know called Julie Mason got small channel on YouTube " Cancer Soothe" been given "terminal" in 2016. They stopped all her treatments and send her to register for Hospice asap. But she went to Integrative doctor and thriving very well to this day with QoL. Its expensive. I looked into her doctor Rosie Daniels site, it looks good and super professional but I can not really afford her )) Julie advised me to go to Penny Broth charity online because they have integrative doctors. And am still with them its great charity ! but its obviously not the same as to have your personal private integrative doctor....
Wow, thank you for that, how amazing, that’s wonderful to hear, but dreadful that we have to try and find a way forward when we are all struggling. I will look into that. Many thanks and good luck with your journey. Xx
Wow ! They not saying that when they offering the drug but as soon as it C returns they saying its "no wader drug "??? I wander very often that if things would be different in private sector??? ))
Yes really frustrating, think I will have to look into the private sector. It would be interesting to hear from anyone in a similar situation to learn if there are alternatives out there that I could suggest to my oncologist ? Xx
I'm Brca- not sure about HRD. I was on 200mg niraparib for 3 months and it kept me stable but tanked my bloods. Dropped to 100mg which didn't work. Now on carbo and caelyx x
Thank you for replying. I’m sorry it didn’t work for you and wish you all the best xxx
Hello there,
I’ve been reading about all the inspirational women on this site for a while now but this is the first time I’ve posted as niraparib worked for me for 3 years.
At first I was on 300mg which affected my iron levels. With careful monitoring I was reduced to 200mg. The main side effects I suffered were insomnia x anxiety but I managed to live with these.
As the other ladies say, compared to horrific chemo these side effects are bearable.
I’m braca negative. I was diagnosed in 2010 with stage 2c clear cell x endometriod cancer of the ovary.
Since then I’ve had 4 cycles of chemo. The last cycle finished in September 2021. Then I went on avastin as maintenance treatment but my ca125 rose again after a year. I would not have qualified for this on the nhs so I used private insurance to fund this. I’ve had private insurance for many years but never used it for my cancer treatment until covid struck. I always felt very well looked after by the nhs.
Now I’m on a trial with immunotherapy. It’s early days but my cancer is stable.
The parp inhibitor gave me 3 years without chemo and it seemed to keep things in check as my cancer stayed in one place. When I came off it the cancer spread.
Everyone is different but if the parp gives you more time between treatments it’s worth considering.
Good luck to you whatever you decide. ☘️
Thank you for your reply. It’s good it worked for 3 years. Did you stop because it stopped working or because of side effects.Anxiety seems to be a common side effect.
Wishing you all the best xx
Hi. I totally get that you want a drug holiday to get feeling good. I’m in the US so basically all private and I go to one of the top cancer centers. When I finished frontline in January 2019 we didn’t know my tumor was somatic brca1 and my doctor said no maintenance. Had we known I would have gone on Olaparib. I really cherished the time I had off treatment but I did recur after nine months. I had carbo caelyx and then onto Olaparib since April 2020. I don’t regret how things unfolded but when you have a first recurrence of OC you become “incurable.” Now I am on Olaparib for the long term. The one difference I see between the US and UK treating our disease is the trade off between your equitable provision of standard of care and our unequal insurance issues. On the other hand our oncologists have a bit more license to try different things—as long as insurance will pay. And because we are regarded as “consumers” the big cancer centers compete for our business by providing quick test results, nice surroundings, etc. I have lived in London and been very impressed with the NHS. It’s been interesting being able to compare the details of our treatments on this forum. Mostly they are the same.
I am also BRCA neg and HRD neg. Diagnosed 3C, but had a recurrence. I could not tolerate the side effects of Niraparib 300 mg or even 200 mg (as well as my platelets dropping so low), so now I am on 100 mg and feel pretty normal, whatever that means! I still have fatigue and I am having more anxiety than I have before, but it is tolerable. It's only been three months, so we shall see if it is working.
I have heard so many ladies say that their docs say 100 mg is useless, and I have heard just as many say that it can be effective at that dose. I don't know why there is such disagreement amongst oncs on that topic, but maybe it's just that more research needs to be done.
From what I understand, Niraparib is the one PARP that is effective for those of us who are BRCA- and HRD-.
I thought no that’s the confusing thing. Oncologists seem to have different opinions. I think I will try it . Hi f the side effects are too bad I can always stop x
Hi, give it a go you will always wonder if you don't try, we all respond differently, good luck
I too am Brca neg, wildtype. Don't know my HRD status but been told that as I had a good outcome with platinum chemo in 2017 Niraparib would be the better choice for me. I finished Carbo/Doxil 8th December 2021. Starting Niraparib on Friday.
Hi there Julie, I am like you 3c OC. Braca negative as well as HRD negative. Diagnosed in Dec of 2019 6 hours surgery same week. Taxol CARBO Jan 2020 for the standard every 3 weeks for 4 or 5 months , then AVASTIN added from February 2020 to May 2021. Second reoccurrence in May (Avastin stopped working) and started Doxil/Carbo every 4 weeks until Nov 2021. CT scan showed NED started Olaparib (Lynparza here in the states). I was told by Onc the reason she didn't start me on any parps after front line is because they wanted to hopefully get everything with surgery and mop up with Chemo and suppress with Avastin. So far started Olaparib in January feeling pretty good just get tired. I asked about Niaparib and she told me Olaparib is the standard for Braca Negative HRD negative patients. Good luck and let us know how you are doing. Question why are they not doing Avastin first?
Hi Debbie,Thank you for responding. My Oncologist initially said that she would start Avastin which is funded for stage 3 and 4 ovarian cancer. However, when she read the surgeons report that he was able to remove all visable disease she said I wouldn’t be eligible to have it. We know that doesn’t mean that I am disease free. I am unclear whether it is a funding issue but she gave the impression that it wouldn’t be effective if there was no actual tumour. To be honest I didn’t question much at the time as was still getting used to the idea of having chemotherapy but when I next speak to her I will revisit her reasoning xx
Keep pushing her as you are the best advocate! I did not have any visible tumors after surgery and was deemed NED after chemo as well but protocols here in the States is you carry on with avastin for 9 months it may only give you an extra few months NED however it gives your body a chance to recuperate from chemo IF the cancer comes back. How it was explained initially to me was it will more than likely have a reoccurrence within 6 to 18 months.............60 to 75 percent of the time. With avastin though sometimes you have 10 percent longer of reoccurrence. I chose the Avastin and though I had a reoccurrence after 12 months feel my body was recovered enough to to handle the doxil/carbo routine and zap the little monsters. I am now on Parp inhibitor Olaparib and doing pretty well after one month. Please please keep advocating for yourself .............Good luck
Debbie
Avastin V Niraparib-clear cell cancer
Anyone on Niraparib?
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