Niraparib

Hello Ladies - I had the good news today in clinic that I am to start Niraparib. I will be starting on one 300mg tablet daily. Have any of you got any tried and tested tips on the best time to take, The doctor suggested at bedtime? Thank you x

[Hidden]

Hello, I take mine at bedtime and have had no issues. The first week was a little rough, insomnia, headaches, nausea but nothing too bad. I can’t drink in them or end up with a super hangover so that’s been off the menu. All in all 3 weeks in it’s been ok.

Hope all goes well for you.

Lisa xxx

[Hidden in reply to Hidden]

Thank you Lisa that is good news I hope you continue to do well xx

[Katmal-UK]

Good news in deed! Hope it works well for you! xx

[Hidden in reply to Katmal-UK]

Thank you Kathy, massive relief that I am "doing something" my CA125 continues to creep up.

[Katmal-UK in reply to Hidden]

Hopefully it will start heading in the right direction.... downwards! xx

[Joanie12]

Hi Lynn I've been on niraparib now for 12 months, I take mine at bedtime and apart from some minor sleep issues, I.e waking in early hours and taking a while to get back to sleep, also my bp went up so on medication for this. Other than that it has been a breeze, for me at least, and I hope it continues. Ca is steady at 11/12, bloods every 4 weeks. Wishing you great luck with it. Just another thing drink plenty of water, I do think it helps.

Joanie

[Hidden in reply to Joanie12]

Thank you, long may you continue to do well. x

[Lyndy]

Oh that’s great news! Good luck xx

[Doglover1410]

Ive been on it since April 19. I started taking mine in the evening and had no side effects at all. I then swapped to mornings as I didn’t want to take to take them if I was out for the evening. I started on 200, was put up to 300 in July 19 but my bloods crashed. I had to have a transfusion and 4 weeks off (I convinced them to let me do 3!!) and then went back on 200. No problems, 4 weekly bloods (this week) CA125 seems to have settled at 10 for now. Very easy to take but just be aware of how you’re feeling on 300, only by how I felt on 300!

I agree drink lots of water to keep things moving 🤣 I did find a bit of an appetite suppressant effect, but after the break I am still waiting for that to kick in!!

Good luck with it, keep us posted xx

[Hidden in reply to Doglover1410]

Thank you, long may you continue to do well. x

[Hidden in reply to Doglover1410]

I was surprised when the doctor said start at 300, my Haemoglobin is low at 8.1 I only just scraped through the criteria to start. Do you mind my asking what your bloods crashed to?

[Doglover1410 in reply to Hidden]

Mine report it as higher numbers. Should be between 120-156 and I got 69. I’m never that high anyway, this week was 119 and that seems around normal for me!!

I just felt a little breathless going up stairs and very aware of my heartbeat. On the day I went in I was feeling my heartbeat in my head and eyes. Didn’t realise how tired I was until I had the transfusion and felt like a new woman!!

Didn’t want to scare you, just be aware. We are all different and 300 might be your number 😊

When are you starting it? You get weekly bloods anyway for the first 4 weeks so they will be monitoring you closely.

Right at the end of my 4 weeks I went to Spain for 5 days. It was a friends wedding and I got the go ahead from my consultant on the Wednesday and flew on the Friday!!

Keep in touch xx

[Samj4800]

Hi I take mine at bedtime (ish) I moved it to 9.30 so I could make Sure i have plenty of water as Tablets are huge. As others have said, rough couple of weeks at first with nausea, fatigue and headaches. 5 months in and I feel pretty good, still can’t tolerate alcohol though. Good luck, Sam

[Hidden in reply to Samj4800]

Thank you, long may you continue to do well. x

[Singingsue]

Hi lyn the best time to take it is bedtime as u don't get the side affects I have been on it for 7 months now and all is well I started out with 200mg but my blood count went too low had a 4 week break and then back on 100mg but all is well so far take care x

[Hidden in reply to Singingsue]

Thank you - did your CA 125 stay the same whilst you had a break? I hope you continue to do well. x

[Singingsue in reply to Hidden]

Hi lyn my ca 125 stayed the same . after 3 years long journey it has gone from 517 to now 16 as they say keep taking the tablets ha!! U do get weekly blood test for a month then monthly checks all being well it will do the same for u if u need any support please let me know u may have people around u but it can be a long road at times x

[Hidden in reply to Singingsue]

Thank you 🙋‍♀️

[Maxjor]

So happy for you and I had Olaparib which evidently is different enough that I won't give my input about it (but it was an easier treatment than chemo and no infusion!) Just wanted to say how glad I am for you and fingers crossed it does what its meant to! oxoxxo Judy

[Spoonsize]

Hi, I am new on here and would like to reply to lyn1987 and also introduce myself.I take it just after eating breakfast and have had no nausea or vomiting. I went straight on 300 mg. I’ve been on them for 5 moths, during which I’ve been able to enjoy life to the full, feeling 10x better than I did the previous 8 months. I have primary peritoneal cancer(which is treated like ovarian) and was diagnosed in Oct 2017. I’ve had 5 months of carbo and taxol, followed by a debulking op . Either side of that I was on Avastin for a year.Late in 2018 I had a recurrence and spreading.Before I started 15 weekly sessions of carbo and taxol I had a blocked bowel caused by the inflammation from a new tumour. Chemo was much tougher this time but resulted in the eradication of 6 small tumours, leaving just one that seemed to have reduced. Then I was put on Niraparib. It’s given me the best 5 months of the last 3.5 years. I’d love to hear from other ladies with primary peritoneal cancer and hear their experiences.

[Hidden in reply to Spoonsize]

Thank you for your reply, I hope Niraparib continues to work well for you for many more months.

Welcome to the forum, you will find every one on here friendly and a constant support network that I have found invaluable, lots of members have peritoneal cancer on here as it is treated the same as Ovarian cancer, I am sure they will be available to chat soon. x

[Aspin in reply to Spoonsize]

I have PPC as well. Diagnosed August 2017. I had chemo, debulking, more chemo. Then recurrence in six month. Tried other chemo. Did not work. Avastin caused major side effects. Went on clinical trial with Rucabarib. Had to stop since the investigational drug required low B.P. which I never reached. Now back on Rucabarib only. But in meantime I have permanent pleurex drain in due to fluid, a nephrostomy tube for kidney tumor and stomach ascites which needs weekly drainage. So count your blessings. I am a mess and doc says ready for hospice, which I am not.

[Rlenesue]

I would and do take it before bedtime. Goid luck, it's been a godsend to me.

[Mptelesca]

Hi, lyn and congrats on getting approved. I was started on 200. It was too much for me as it caused a drop in platelets. 100 alternating with 200 every other day seems to be working. I’ve been on for 18 mos now. My advice is to drink as much water as possible and to stay ahead of constipation. Taking at bedtime seems to work for me as I have not experienced nausea yet. It did push up my blood pressure which is under control now. Best of luck to you!

[Hidden in reply to Mptelesca]

Thank you so glad to hear it is working well for you. long may it continue. x

[Avocapearl]

All the best to you! I started on two tablets but my neutrophils crashed so now am on one ,which i take at night a d things seem to have stabilised.

Had issues with high blood pressure but that has now sorted. Still struggling a bit with constipation now and then. Must remember to drink more!

Do look after yourself as fatigue can hit you like a brick wall if you overdo it.

Apart from that all is good, my oncologist has given me the go ahead to visit my daughter in Australia 😊