Is anyone taking niraparib

[Tealgirl7]

Has anyone been taking niraparib long-term

[Skyeplus]

HI, I have been taking it since end July/Aug 2022. Did have a break in Oct because of surgery but on again on it. I have not experienced any issues to date although I do get tired and have the odd headache

[Differentforgirls]

I’ve been on it since July 2020. Had more or less every side effect going but managed them & they’ve reduced in severity overtime.

Feel lucky they have been working for me for so long 🙏🏼

. My dose needed adjusting several times but since taking the lowest dose ( 100mg) from September 2020 they have been ok.

Are you about to start taking them? Hope they work as well for you. Xx

[Tealgirl7 in reply to Differentforgirls]

I have been on the medication for 6 months. I have just completed my CT scan and waiting for results. 3 month scan showed good results. I have been dealing with this disease for almost 17 years. Stage 4 at diagnosis.

[Differentforgirls in reply to Tealgirl7]

That’s incredible. Sounds like you’re doing all the right things to keep the disease at bay 👏🏼

[Doglover1410]

I was on it for 3.5 years with no side effects at all x

[Tealgirl7 in reply to Doglover1410]

So happy to hear that. I have been on it 6 months and just completed my cat scan to check my disease progress so I am really nervous. I am very fatigued from the drug and I've had a few symptoms but all worth it so far. Are you still on the medication.

[Doglover1410 in reply to Tealgirl7]

good luck! Sadly I’ve come off it now as the lesion on my spleen grew 😢 had my spleen removed and back on a bit of mop up chemo, but it held it back for 3.5 years. xx

[Alice77]

I have been taking 200mg daily for almost a year. I still have insomnia and have had to stop the Niraparib three times because of neutropaenia but am otherwise feeling ok apart from a reduction in energy levels although that may be partly lack of sleep. It seems the side effects reduce after a while so I am still hopeful of a decent night's sleep eventually!

[Sashay2020 in reply to Alice77]

I have had so much trouble sleeping. I finally saw palliative care and was prescribed an older generation anti-depressant called Trazodone. I take it before bed and it works great. I find that I do well on half the dosage the doc prescribed. Hope you can get your insomnia sorted soon.

Sashay

[Differentforgirls in reply to Alice77]

Insomnia appears to be such a common side effect - mine was awful but got better especially after using low dose HRT gel which was prescribed ( after much discussion about whether it would wake up my cancer & be safe for me to take ( as I had a DVT in 2018 soon after 1st debulking ). Apparently the gel form is much safer. Been on HRT since August 2022. Sleep much better 💤

Hope you find a way of helping your sleep whilst taking Niraparib xxx

[Pianoplayer731021]

Hi, I just left a note to purplepansies about my experience with niraparib.

[Flora3]

Yes, I’ve been on it since May 2019. I was diagnosed with High Grade Stage 4 ovarian cancer in 2016. No specific side effects now. Good luck with your treatment!

[Kaitlinsmum]

Hi, I was taking it for nearly 3 years. Couldnt tolerate full 300mg dose, it caused severe constipation. Was reduced tp 100mg daily. Still had to take a cocktail of different laxatives twice a day to feel normal. All went well for 2 and half yrs then sadly a recurrance appeared on liver. Stopped Niraparib and now back to full chemo every third week. Onc says the Niraparib did a good job of holding it back for as long as it did. Was told that once I come off Niraparib i wont be able to go back on it.I feel lucky to have had it for as long as i did. Just wish i had spent the time having more fun and holidays

Good luck xx

[Tealgirl7 in reply to Kaitlinsmum]

Thank you so much for your reply. It is great to hear of people that did so well so long on that drug. Hopefully there are some new trials out there for you. Thank you for the trip on living life well.