I have now had two doses of Niraparib. Survived so far! However I don’t want to take my recommended dose of 200mg and am only taking 100mg. I asked my oncologist if I could do this and she said no. Of course this leaves me in a bit of a quandary as my results will not be properly recorded and what will happen if a dose reduction is advised? I weigh 63kg and think I am doing the right thing, wanting to minimise the side effects, and it does give me the option increase the dose if I think it isn’t working hard enough for me. Any thoughts? I would much prefer to do this with the blessing of my oncologist but I presume she is bound by the prescribing company, who are delivering the drug and offering me home blood tests.
Niraparib dosage: I have now had two doses of... - My Ovacome
Niraparib dosage
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bluepeterella
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Hi Bluepeterella. I am 60kg and started on 200mg, which is the correct dose for those of our weight (think cut off is around 75kg) and a full dose is 300mg. I felt fine but my bloods tanked so they dropped me to 100mg. All I can say is the 200mg worked well and stabilised my CA125, but my CA125 is increasing now I'm on 100mg. Now they're suggesting I may have to come off it if the markers increase further, and that will be the end of maintenance for me and back on chemo; obviously I don't want this. I would recommend you take the proper dose and see how it suits you: the only side effect for me is mild insomnia but I manage this by taking it in the morning and using 10mg Amitryptaline before bed when I feel over-tired. Remember, you may only get one stab at this! Good luck x
Thank you, those are wise words. I’m not sure why these little pills scare me so much after everything else that has been put into my body!
OvacomeSupportPartnerMy Ovacome Team
Hi there bluepeterella
Thank you for your post.
It’s really important not to adjust your dose of niraparib, or any other prescription medication, without the approval of your doctor. This is because the dosage that has been prescribed will be the safest and most effective amount based on clinical evidence. The dosage they have prescribed you will have been delicately balanced between efficacy and side-effects so we urge you to discuss your concerns in more depth with your medical team to ensure they can keep you safe.
If you would like to speak to a member of the Ovacome support team, please get in touch. You can contact us via our Support Line 0800 008 7054 or 07503 682311, speak to us again by email at support@ovacome.org.uk, or via the Instant Chat function on our website. We are also available to talk by booking an individual video call on Zoom or Skype if that may work better for you. All our services are available Monday – Friday, 10am – 5pm.
Best wishes
Annie
Ovacome Support
Hi. I know it’s scary starting a PARP. But really at its worst it’s nothing like chemo. It’s just the side effects are constant instead of cyclical. I’ve been on Olaparib for sixteen months and I have gotten fed up at times with fatigue and nausea. So m oncologist just lowered my dose from two thirds to half the full dose and I am very anxious about it. The drug has been a game changer for me. I have seen a number of people on this forum die who were diagnosed when I was and chemo didn’t get me to ned after my first recurrence but Olaparib did. You don’t know whether Niraparib will work for you or how long but you only have one chance to take it. It’s all a crapshoot but you have nothing to lose by trying the 200. I imagine you’ll be getting weekly bloods at first so you’ll see if it agrees with you. You can always drop down. Xx
Thank you. I refused Niraparib when first offered but now after second recurrence I have gratefully succumbed. I have always had the minimum possible chemo with lowered dose, and I take some off label drugs which my oncologist is not fully on board with. My approach is a bit unorthodox I think. It’s about getting the balance between having as much life as I can but being able to fully enjoy it too.
I totally agree with that. I refused Avastin during frontline for the same reason.
Hi I started on 200 and then was put up to 300, then my bloods crashed and I had to take a 3 week break. Then I was put back on 200, that was August 2019. I was told that they can reduce the dose but not increase it (I asked if I could try the 300 again!)
I wouldn’t want to mess with the dosage without a really good discussion (which is is really good at!) as it’s all finely balanced for us. I have had no side effects (apart from the blood crash!!) and been on it since April 2019.
I know we are all different but my onc also won’t let me take anything else ,even a vitamin, as he doesn’t want it to mess with the Niraparib…please talk to them x
Two and a bit years is brilliant, I would be very happy with that. My oncologist is quite tolerant of my ways and works with me even though she doesn’t always fully agree. I don’t think the dose is finely balanced to be honest, more a case of starting high and adjusting according to side effects. I would much prefer to start low and possibly increase but I do feel like my hands are tied.
You could ask, I just know mine said he wouldn’t increase only decrease! Thinking of you xx
Thank you x
Peterella and Doglover1410, consult another oncologist for a second opinion. My gyn/onc let's me take Vit D and B Complex as they were prescribed by my GP. I also take melatonin to fall asleep. He listens and works with me to help maintain a quality of life worth living. You deserve that same consideration. FYI. he cut the dose twice and I had 3 "Drug holidays" to deal with overwhelming exhaustion and weakness. Olaparib worked for 20 months. I'm back on chemo for 3rd recurrence in 6 years. FYI, I am a small person weighing 138 lbs (9.8 stone or 62.5 kg). My doc says anecdotally that "skinny" people seem to get more and worse side effects.
Mine said ‘you’re bigger so we’ll start at 200’ I said ‘well thanks’ and he goes ‘no, no, I meant tall so will have bigger organs’!!!!x
I am 63kg. The dosing is reduced to 200 if you’re under 77kg but no lower.
I can’t fault my oncologist to be honest. She is interested in what I do and tries to accommodate, but I know she’s tied by the way the research is carried out and by NICE guidelines. She has lowered my chemo doses and given fewer cycles when I’ve asked. I think I will get my dose reduction officiated by her eventually as she always listens if I say I’m not coping x
Very glad your doc is listening to you. Dosage is the eternal question for medication. How much can you lower something and still have it be effective? I was weak, exhausted and frequently out of breath even though my bloods looked fine. On Olaparib higher doses I realized I could not live that way and participate in my own life! Lowering the dosage made all the difference. I felt alive again.
I am not sure why you are doing this. I was started on 1200mg of Rubraca, the full dose, and asked my oncologist if I could start on a lower dose, as I had read lots about side effects. He said no, so I have been taking the full dose. I have been fine. The oncologist will soon lower the prescription if you start getting too many unpleasant side effects.
Jenny
I’m doing it because I want good health not illness. I am looking for a balance of quality and survival, rather than survival alone. My oncologist does work with me, prescribed carbo only for my second recurrence to give the least possible side effects. It did the job, but I still became quite ill with digestive issues towards the end. I’m therefore really glad I didn’t put myself through a combination of chemos as would be standard care. I want to walk my dogs and ride my horse. I want my teenage daughter to remember me as an active engaged mother, not someone always poorly and needing hospital care.
You are right though about the dose being lowered quickly if necessary and I still have a lot of thinking to do x
You captured exactly how I feel. I have an adult daughter who I want to have as good a life as she can craft for herself. She waited about three months post chemo when my blood had recovered enough so I had energy to take care of myself. Since then she spent a month in Hawaii. This week she left for three weeks in Europe. I don’t want her worrying about me. However things play out, I too want her to remember me as having a good quality of life, not necessarily the longest life. I’m 70 and because my daughter is 36 and self sufficient, I suppose I have the dubious luxury of refusing a treatment even if it shortens my life. A pulmonologist pressured me and even complained to my oncologist that I was delaying a needle biopsy. It really annoyed me because if I had the needle biopsy and it revealed metastasis in my lungs, I would have had to go back on chemo. I did not want that. I needed a break from chemo and I wanted my daughter to have time to enjoy travel with friends as much as she is safely able to in this time of Covid. I want to enjoy as long of a quality life as I can. I hope we all can do that. Sashay
Sashay you are so brave and so thoughtful.......I know sometimes these decisions are so hard to make. I was in law enforcement for 22 years. Over the years I have buried as many as 10 officers during my duties. It is getting worse. Just this past 6 months, We had a husband and wife both detectives both killed by a wrong way driver, 29 years old , another officer died of heart attack 35 years old and just last week a female officer complained of headaches and she died a week later of a brain tumor. I know there are many more tragedies around the world but I do feel we are lucky in the respect we make the choices about our life. We are the ones who are facing the pain, nausea, sleepless nights, the look of pity in our family and friends eyes. This disease of cancer makes us stronger more resilient makes us live every moment and does give us mental strength to help others and our family as well! Do I wish that I didn't have it wish for a cure ......absolutely! But this is the hand I was dealt with and I am grateful for everything I did in my life and continue to do until the very end. Courage is a great gift you can give to your daughters, sons, family and friends. With hugs and encouragement for all of us TEAL LADIES.......my saying
TEAL LADIES STAY STRONG!
I wish I had kids who worried about me 😑 My two teens are concerned and all, but absolutely consumed with themselves. It's disheartening sometimes. Oh well, jus wanted to grouse.
My 14 year old is similar, acts as if she doesn’t value me, even though I know really she would fall apart without me.
They don’t know how to cope, bless em, and looking the other way is their best mechanism. The teenage years are all about being self obsessed. Don’t take it personally, they need you more than they even know x
HelloI started on 200mg last year. I felt so lucky to have this drug. However after a short while I became incredibly constipated and felt really lousy all the time. My dosage was cut to 100mg. I worry that this dosage wont be as effective but my oncology team assured me it would still be beneficial. I was told that the dosage would not be put up again because it was clear my body couldnt cope with it so high. If I were you I would start high and see how you get on. Our bodies react differently and you may be ok. Your oncologist will be monitoring you. It is a good idea to keep a daily wellness diary to help you feed back to your health team.
Good luck!
Like you, I’m a bit nervous about starting Olaparib at the highest dose. I’ll be starting on the Capri trial which has Olaparib and an ATR inhibitor that is the trial drug. More than anything, I’m anxious about stopping my off label metformin and the supplements (Curcumin, ECGC, Resveratrol, mistletoe, and many others that my Naturopathic doctor prescribed). Did your oncologist insist that you stop any other drugs or supplements?
No, she knows that I take drugs prescribed by Care Oncology Clinic plus dipyridamole. I take all those you’ve mentioned too. It’s one of the reasons I won’t look at trials because these drugs would skew the results and they would insist I stop. I think my oncologist just thinks I am rather eccentric and she has come to accept my ways. She even said ‘maybe the things you take ARE helping’ when my last remission was longer than expected, which I felt was a small victory!
I tried the Care Oncology protocol. Although the Doctor and nurses were very nice, I stopped after 6 months because my CA-125 continued to rise.
I started just as I was heading for my first recurrence. I carried on and I believe it gave me a better response to chemo allowing me to have fewer cycles at a lower dose. It didn’t prevent my second recurrence but again I think it made it easier to treat. It sounds as though you are taking similar things to me anyway.
You’re definitely right! Various drugs and supplements improve quality of life while on chemo. I also had low dose of carbo/Gemzar and avastin with very negligible side effects. Let’s continue to support our bodies with combos that are beneficial! Good luck on your journey 😊
My experience with Niraparib was the same as Saffery above - 200mg actually lowered my CA125 consistently - but the drug put my blood pressure and heart rate up,so I had to stop, then restart, stop and restart till finally they reduced the dose to 100mg instead. Which unfortunately was ineffective - my CA125 rose by around 30 points every two weeks, till they told me to stop completely. I've now had a scan to see if I need chemo yet, will find out in a fortnight.
I was really disappointed - its so annoying having a drug that works on the cancer, but a side effect prevented me from taking it, or taking enough of it. I'd stick with the 200mg until you see if you develop problematic side effects and can see whether its having a good effect on the cancer.
Miriam
That is hard. However it’s no good if the treatment is putting you at even more risk. What a shame the lowered dose was no good for you x
Thanks for the sympathy🤗 It is quite annoying, because it worked so well at 200mg. I tried various BP/heart rate drugs, but none of them did the trick - they either reduced the blood pressure effectively but not the heart rate, or the other way around. Verapamil had a reasonably good effect on both problems, but my liver refused to tolerate it. I had none of the the usual side effects from it, but got the really rare side effect of hypersensitive hepatitis which showed in my bloods quite quickly when they upped the dose, I was initially told it couldn't be the verapamil, but that 'very rare' side effect was mentioned in the tiniest print ever right at the bottom of the leaflet, I had to get a magnifying glass out to read it! I quite often react to medications with a rare side effect, and don't get the common ones, I've been here before... you know when they say 1 in 100,000 or something for incidence of a side effect ...that'll be me.🙄 Sod's law...
Miriam
Bamboo, I was told that if I had bad side effects on Niraparib I could change to Rubracahas that not been mentioned ?
No, unfortunately. The Head of Oncology initially said I could have 4 sessions of carboplatin and then go onto Rucaparib - but he was wrong. Because the carboplatin was the first and only chemo I'd had, the NICE rules state Rucaparib can only be offered to those who have had a response to a platinum based chemotherapy as second line for recurrence. So I was only allowed Niraparib instead... I had my surgery in January 2018, but refused adjuvant chemo, went just under 2.5 years and then had carboplatin, which he wrongly believed would count as a recurrence. It was a recurrence, and likely occurred at the same time as if I'd had adjuvant chemo in the first place (I'm Stage 4b), but it was refused. I have asked if Rucaparib might be an option after more chemo, but apparently, PARPS are only ever offered once and not again after subsequent lines of chemo. Which strikes me as a bit silly, but those are the current rules.
To be honest, Rucaparib might not be a great drug for me either - I have FH, familial high cholesterol, and rucaparib can significantly affect cholesterol levels. It's just how the cards fall isn't it...I'm surprised I've got this far to be honest, with two types of cancer at Stage 4b, its been 3.5 years since diagnosis /surgery, I never expected to make 71, but I have... though I'm not the person I was before I had chemo...
Miriam
Hi, I’m on 200mg. Was initially on 300 mg but it was reduced after a month or so due to anemia. Just wondering how long a remission people are getting with it - presuming you are high grade serous ovarian cancer .
D
Yes high grade. My last remission without a parp was 18 months so I’d consider anything more than that as a success! I’m only in my first week of taking it though.
I cannot understand your thinking. I have been on Niraparib 200mg for months with the only side effect being a bit of insomnia now and then. It gives me hope of holding back the cancer. It seems sensible to take the dosage you are prescribed and only reducing it if you get any side effects. Nevertheless, I do wish you well with whatever you decide x
Gosh, i always felt it so risky to fiddle with what the doctors prescribe. I figure they know better than me when it comes to medication. I personally always thought what if I don't do what they told me, then if I recur it's all my fault because I didn't do what they said. Those sort of thoughts come to my mind.
Mine too! Sometimes I feel we might as well be playing Russian roulette. I just try to keep myself as well as possible, and if I don’t feel good about something I try and change it. But I do work with and discuss with my oncologist
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