Hi ladies, I have been on Carboplatin /Gemcitabine for first recurrence & then on Gemcitabine on its own for a year which was been used as maintenance. This has worked very well for me as, remaining nodes after my last op have decreased & my oncologist is very pleased with my recent Ct scan. On my last appointment he had said he would probably give me a break from treatment as I couldn't stay on Gemcitabine any longer. I was in yesterday & I am getting a break but only till mid Jan so I am a bit disappointed. The plan then is to put me on Niraparib as I am Brca negative & reading the information they gave me I am a little nervous about the possible side effects. I would love to hear how any of the ladies who are on Niraparib are finding it and is their quality of life good on it?
Quality of life? : Hi ladies, I have been on... - My Ovacome
Quality of life?
Hi. I’m on Olaparib rather than Niraparib but read frequent posts on Facebook by people on Niraparib. The one thing I see consistently is a need for dose reduction, especially from women who are slightly built or small. If I were you I would ask to start on 200 mg a day and see how that goes, unless you are tiny, in which case I would ask about 100. All the PARPs seem to start out with a number of side effects that decrease after a couple of months. In my case I feel Olaparib has been a lifesaver so I’m willing to put up with some fatigue. I have a somatic brca1 mutation. I wish you good luck with it! Xx
Thanks Delia, I used to be a slim, 5ft 8 woman before I was diagnosed & before my surgeon got near me but not anymore I am afraid 🤣. I will be speaking to the nurse specialist before I start on it & I will ask her . How long are you on the olaparib now & were you nauseous at the start or was it just fatigue? Sorry all the questions, I dont know why I am anxious about starting on Niraparib as I have been on Carbo/Taxol/Avastin first then the Carbo/Gemcitabine. Maybe its because at the start of our journey we know nothing & just get on with it but then when you have been through it all before & starting over again & again you question everything 🤔 I am glad been on Olaparib is given you a good quality of life as well as keeping the beast away. Take care X
Hi. At the beginning I did have nausea and fatigue and joint pain and wasn’t happy about the prospect of staying on it long term. I took zofran (odensatron) in the morning first thing and that fixed the nausea but then I had to deal with constipation . . . But the nausea didn’t last too long. I only took the zofran for a month or so and then occasionally. At least you only take Niraparib once a day so you can figure out when works best. My sense is that Niraparib has slightly different side effects, like insomnia, but you may be fine. I started on 400 mg vs the full dose of 600 and after a year went down to 300. After that I did pretty well with it. I’ve had a couple of two week breaks, one of which coincided with a vacation which was great. My oncologist is all for quality of life, thankfully. I still had some tumor when I started on Olaparib and after a few months it was gone. That’s what keeps me going! You may not have any major side effects. You won’t know til you try. I’m keeping my fingers crossed for you! Xx
I know we are all different & as you said I might not have the same side effects as you. It sounds like you had had very positive results especially the fact your tumour disappeared & hopefully it will remain that way for you. I will update you when I start & 🤞I can tolerate it too x
Hello, I was diagnosed in 2020, had 3 rounds of chemo, then debulking surgery followed by 3 further rounds of chemo. 5 weeks later I started Niraparib (I am BRCA negative) . I was given 200mg as it is based on weight, 300mg would have been too much for my weight. I achieved 11 months on Niraparib apparently the average is 9 months before cancer returns, not the wonder drug I thought it was but we are all unique and I have read that some ladies have been on Niraparib for quite some time. My CA125 was creeping up slowly each month whilst on it so I guess the Niraparib was trying to hold the cancer back. I was encouraged to take Niraparib at night time so that sickness wouldn’t be an issue and to be fair I didn’t really suffer with side effects. In my opinion I would say give it a go as there is very little else available and you might be one of the lucky ones that Niraparib works for, anything that holds cancer back for any period of time has got to be worth considering. All the best with your journey and keep us posted as to how you get on. Xx
Hi Flute_7, thank you for replying & sorry the Niraparib didnt give you the great results you were hoping for. I hope you are doing ok at the moment. Are you back on chemo now? I think I will definitely be taking it before I go to bed, it sounds like that helps with the nausea. I think its the fear of the unknown that has me so anxious this time & because I wasn't too bad on the Gemcitabine I am afraid of going backwards when I am trying to get some of my life back. Its not an easy journey for any of us. I will let you know how I get on with it. Take care X
hi Delia, do you mind if I ask what your weight is? I was 60kg when initially diagnosed with OC stg4, now at 50 kg after 6 chemo cycles, debulking +HIPEC surgery; now on Olaparib. Was started at 600mg, then reduced to 300 when platelets and haem plunged. In the last 2 weeks, upped to 450mg after haem went Upto 11 units. My body immediately rebelled but now mostly ok after the first 10 days. I can handle the fatigue; it Is the tummy fullness/heaviness that is an irritant. Anyways would love to know your weight since you are at half dose so that I can check with my doc next time.
Thanks for indulging this long post!
Tulip, wish you the best on niraparib. So into it full on positive; visualise spending lovely days or shopping with your daughters and it will turn out that way.
Thanks Goodgirl98 😀
Hi. I weigh a lot more than you—around 72 kg, 5’8”. I don’t think they use weight with Olaparib. I was on 400 originally because my blood counts hadn’t entirely recovered from chemo. I think my onc thought I might eventually go up but I had a terrible time with side effects and then after a year my blood counts started to go down suddenly and I felt Terri’s she lowered it to 300 and it’s much more tolerable.
Hi.
Hope I can be of help to you. I started Niraparib in July 2020 & am still taking it. I am BRCA negative.
When starting it I was put on 300mg ( I believe no one starts on that anymore). I was terribly sick on that dose so it was reduced to 200mg a few weeks later. For me, the side effects weren’t great on that dose either so my oncologist reduced the dose further to 100mg per day. I have been on 100mg per day ever since.
I’m not going to lie, there’s the odd day I don’t feel so good & end up cancelling plans, but overall feel I can get on with living my life. I am so very grateful it is still working for me.
Really hope it works for you too & the side effects are manageable.
Take very good care, Lynne xx
Hi Lynne, its great to hear from all the ladies who are on Niraparib & overall it sounds like its doable for most. My oncologist did say it will be a matter of tweaking it a bit when I start it & that it will probably take time to settle. I am definitely going to question her about the dosage as none of the ladies who have replied seem to be able to take the higher dose of it. I am delighted its working for you & long may it continue. Xx
hi there I’m also on a Parib and have been for over a year. I did have initial issues with high cholesterol and low white platelets but they were onto it immediately and adjusted dosage and put me on Simvastatin. I get very tired but apart from that little or no side effects. Go for it. Don’t anticipate problems and you probably won’t get them. Good luck.
Thanks JustKBO, I have always stayed positive since the beginning but I suppose sometimes we get weary of it all, but its great to come on here & know that you are not the only one & everyone gives each other the encouragement to keep going. My two daughters are both young adults so I want to stay around as long as I can for them so will try anything at the end of the day. 🤞Niraparib keeps working for you & take care X
Hello, I was diagnosed Dec 2021 with high grade 3C, had 4 rounds of chemo (plaxitaxol:carboplatin), debulking surgery the 2 more rounds of chemo. I was NED after this. Went on 200g Niraparib 6 weeks after treatment. The side effects were minimal - constipation and nausea but I take Domperidone and Dioctyl for these symptoms. I take it at night.
Unfortunately after 4 months the cancer returned so I don’t think it works for me. I’m BRCA negative.
My CA125 was creeping up from 3,5,6,8,13 and yesterday 60 right from the start.
I’m now waiting to see what the next step is.
Don’t worry about the side effects, I think it is manageable and I hope it works in your body!
Best of luck
Narna1, I am so sorry it stopped working for you & hopefully they will put you on something now that will do a better job. Have you been on Carbo/Gemcitabine? Thats what I have just finished & it has worked brilliant but unfortunately I cant stay on it any longer as my bone marrow has probably taken a battering due to been on Carbo/Taxol/Avastin in 2019,Avastin only till Sept 2020, then Carbo/Gemcitabine 2021 & Gemcitabine only till a month ago. You should ask your oncologist would it be suitable for you. I will definitely give Niraparib a go & 🤞. Please let me know how you are doing & hopefully you will be in a better place shortly Xx
hello Tulips66, I am Brac2 positive with the mutated gene. After several reoccurrence and chemo after chemo I was put on Rubraca maintenance pill in 2018. I take total 1200mg daily I was told as long as my body will tolerate it I would stay on rest of my life. So far it’s keeping cancer at bay, side affects are not bothersome considering the alternative. Best to you always. God Bless Patsy
Patsy, that sounds very positive & I am definitely going to give Niraparib a shot & hopefully it will work well for me too. Long may it continue to work for you & thanks for all the encouragement, I am feeling better now that everyone has given me mostly positive feedback about what lies ahead. Take care & thanks X
I was diagnosed in 2006 with stage 4. I had chemo and debulking surgery at that time. I did a few trials but nothing seemed to work. My CA 125 levels were between 150 and 300 over the last 12 years and I never hit a normal range. A year ago they started doubling again. So I reached 700. They put me on a new carbo taxol regime for four treatments. 4 weeks after I started niraparib 200 mg. I have now been on it for 4 months. I have had side effects in the beginning. The main one high blood pressure but that was dealt with and it's fine now. I definitely had some insomnia but it is correcting. Other than some fatigue which could be attributed partially to my age at 72 and everything I've been through I am feeling really well. I have a full life walking golfing and enjoying life . My CA 125 is in the normal range for the first time since I was diagnosed almost 17 years ago. Happy I started this medication for sure.
Hi Tealgirl7, after a rocky time of it I am glad that Niraparib is working for you. The Ca 125 is a great marker for me too 2,246 on diagnosis but I dont ask them all the time what it is because if its high I get upset. I know if they are worried they will let me know soon enough. You sound like a very strong, positive 72 yr lady who is still around 17yrs later & I am delighted you are living life to the full & not letting it hold you back. I am definitely giving Niraparib a try & hopefully it works just as well for me. All the best & thanks for the encouragement X
I have been on 200 mg for 4.5 years now. Initially had all the side effects but most have settled down now.
A long term side effect of PARPS are changes to your blood and gene mutations which I have developed. It increases my risk of pre - Leukaemia /Leukaemia but not by much. I am now under a very good Haematologist who specialises in these disorders. Both she and my Oncologist feel that the benefits far outweigh the risk. I’m followed up every 2 months by my Oncologist and every 6 months by the Haematologist .
So far I remain well.
4.5yrs on Niraparib is brilliant 👏 & even though it hasn't been easy for you it def seems to be keeping the beast away so thats what we all want from our treatment. They seem to be keeping a close eye on you & hopefully it will keep working for you. I wont be starting till mid January but I will let you know how it goes. Have a great Christmas & take care Xx
I am in a clinical trial with Niraparib and was previously in a trial with Olaparib. I have had no side effects. My lower dose was determined by my weight and the fact that the study drug: Oregovomab can lower platelets.
I was on Olaparib for 10 months, ending last Summer, then began Niraparib in August which I’m still on for this trial. I would not be able to afford the Parps ($2000 a month) without being on the trials where they’re free.
is Avastin an option? Kept me in remission for a long time.
Hi Leniko, I was on Avastin with Taxol & Carboplatin in 2019 when first diagnosed. I then continued on the Avastin on its own till Sept 2020 when unfortunately it stopped working & I recurred. More surgery followed & chemo again Gemcitabine /Carboplatin 2021. I finished Gemcitabine only a month ago which has kept me stable but unfortunately I cant stay on it any longer so thats why they are starting me on Niraparib shortly. I am glad the Avastin kept you in remission for a long time. How are you keeping now?
the Avastin recently stopped working, so we are doing 4-6 rounds of Carbo/gem to knock it back like we did in 2019. Hopefully, I can then maintain on Avastin again.
Sorry to hear the Avastin stopped working & hopefully the Carbo/Gemcitabine will get you stable again. My oncologist kept me on Gemcitabine on its own as maintenance after been on the Carbo/Gem & the results have been good. He was very pleased with my last scan results so hopefully the Niraparib will keep it that way. All the best going forward & let me know how you are doing X
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