Hi there everyone. It was great to get replies to my query about diet after bowel obstruction.
Now I have another question - I am (hopefully, bloods permitting) having my 6th and last chemo next Friday. My SCN has sent me details of Niraparib, as she says I need to decide whether to go on it, although she says she has some concerns re my blood, as my blood results have always been very low. I was very dismayed to read the long list of unpleasant side effects! I have been very lucky on chemo, although the dosage was reduced by 20%.
I am a natural insomniac, am BRCA and RHD negative and am 72. Do I take the leap and try it or ‘watch and wait’? I see on another post that new research has brought into doubt the efficacy of PARPs. Now I am really confused!!
Any help, comments from you lovely ladies would be very much appreciated.
wishing you all good things and a happy weekend.
Angela xx
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Lilyada
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Thank you for your post about deciding whether Niraparib is right for you. I'm sure there will be several of our members who will be able to share their experiences of taking PARP inhibitors, including Niraparib.
Regarding your comment on new research around the efficacy of PARP inhibitors, I wanted to mention that our team are are currently looking into getting some more information about this point and we will share it as soon as we have an update.
In the meantime, please do discuss your decision with your clinical team as they will be able to advise about your own individual situation.
If you would like to speak with a member of the Ovacome support service team, you can contact us by calling 0800 008 7054 or by emailing support@ovacome.org.uk. All of our support services are available Monday – Friday 10am -5pm
I'm just getting in touch to let you know that we have now replied to the post you mentioned above, which contained some questions about the efficacy of PARP inhibitors. You can find our response through this link healthunlocked.com/ovacome/... .
I hope our response is helpful in explaining what the new ASCO’s (American Society of Clinical Oncology) rapid recommendation updates mean and their potential relevance to the Ovacome community.
As always, please don’t hesitate to get in touch with us if you have any queries or would like to talk anything through. You can message us through the forum, email us via support@ovacome.org.uk or call our support line on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm to help with questions, provide information resources, or just have a friendly chat about anything that may be on your mind.
I think the doubts raised in the latest research are more about those with recurrent disease. I think they are still recommending for newly diagnosed (which you are I think?).
I think that everyone gets spooked by the list of side effects. Tbh I was terrified! Not everyone gets them and sometimes they occur in the first months and fade away. Don’t forget, it’s up to you. You can start the Niraparib, then decide you don’t like it and stop.
I know that puts it all back on you but you are in the driving seat with this one xx
Hi have been on Niraparib for two years and have had no significant side effects. Everything has remained pretty stable with a slight blip when I had a non related infection.
Hi lilyada. I've been on niraparib for several months now and don't have any side effects at all 😊 they are very careful and monitor you very closely on it, best of luck with whatever you decide xx
I was on niraparib for 11 months struggled with side effects and dose was reduced and all was fine during that time but the beast returned and have just finished 6 rounds of chemo and waiting for results of scan
Everyone is affected differently by side effects and yes I would still do it again good luck on your journey xx
Everyone is different and there’s absolutely no knowing what side effects you might or might not get, but the drug company are obliged to list all that have been reported to them. I was on Niraparib for three and a half years from 2017 until it stopped working for me and don’t regret it for a minute, and just wished it could have worked forever. My side effects were easily manageable, the worst for me being extreme sun sensitivity. Having the drug meant I could live a near normal life, and be around to see both my son and daughter become parents, and get to know my adorable grandsons. You can always try the drug, and if it doesn’t agree with you, then stop - but that’s the only way of knowing whether it would be suitable for you. Wishing you all the best with whatever decision you make.
I can only give you my experience on it. Was on it from April 2019-August 2022. They started me on 300 a day but my bloods crashed and I had to have a break and an infusion. Started back on 200 and had absolutely no side effects at all. With my onc’s blessing I took it in the morning as I didn’t want to have to take it if on a night out!!
I’ve had said nights out, holidays, days out and lots of fun with my friends.
Sadly in May this year my numbers started keeping up very slowly and had to come off it. That’s another good thing, you are monitored with bloods closely.
Just in hospital after having had my spleen and pancreas tail removed, but itching to get back in front of him to see if I can get back on it (after tissue testing!)
So I’d say yes, go for it. Hopefully you’ll be a lucky one like me, and if not you can come off it knowing you’ve at least tried.
I always find it best not to re-read the side effects too much as we can convince ourselves we’ve got them all!!
Sorry, gone on a bit but good luck with your decision x
Thank you all for taking the time to post your experiences. Certainly made me feel less panicky! I hope further down the line I’ll be able to help someone else, like you have all helped me!
Yes, treatment decisions are so difficult. I was on Niraparib for about 5 months. My side effects were light, tiredness and less stamina but so much easier than chemo that I would have been delighted to continue. Unfortunately it didn't work for me but I know others have had much better results.
My oncologist recommended it from the perspective of leaving more tools available for later, rather than using up your chemo options.
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