Recurence

[PaumicB123]

Hi wondered what side effects with niropirad as am being offereredjust out hospital after total hysterectomy omentom removed and shock stoma was given mopup chemo that put me in hospital just don't feel ready for more treatments as last year in out of hospital no normal life been told they removed as much as possible in surgery only just getting over any advice off you brave ladys am I being right delaying decisions on parps give myself some me time thanks in advance

[Ydaff]

HI PaumicB123

Your oncologist is probably the best person to advise you on whether or not to wait before commencing Niraparib, but I understand that there’s a time limit after treatment, as to when it can be given effectively, so you may not be able to wait . Having said that, please don’t be frightened of it. They will warn you about the possible side effects, they have to, but I have been on Niraparib for 16 months now following a recurrence and I am so glad that I was offered it. Really the only problem I had was some nausea when I first started. I was advised to take it at night, but felt sick shortly afterwards. It says to take with or without food, but I was told that for many people, having something to eat with or just after helps sometimes. It did for me and I don’t really have any issues with nausea now. I do tire more easily, but at our age we might be slowing down a bit anyway 😉. I would advise to keep as active as you can though - but of course having just had surgery, start with a few steps and slowly build up as your strength returns. I go for a walk every day whatever the weather, and feel so much better after I have been, even on days when I really would have preferred to stay at home. Niraparib is much easier than chemo. I was very apprehensive at the start (kept a bucket by the bed ‘just in case’); but my fears were unjustified and I am so glad that I took the opportunity to have it and dread when I will have to stop.

Good luck whatever you decide. Hope all goes well for you.

[PaumicB123 in reply to Ydaff]

Thank you so much for your reply and helping me decide

[Ydaff in reply to PaumicB123]

Hi again. Just to wish you good luck and hope you do well on Niraparib. You will be monitored regularly especially at the start, so if should be unlucky enough to have any problems, do report it. By starting the treatment, you don’t really have anything to lose (definitely not your hair 😆), as if you find it hard, you can stop. I forgot in my last message to mention one other side effect I have, and that’s sensitivity to the sun, particularly on my scalp. It hasn’t stopped me going on holiday (something that when I was diagnosed, I never thought I would do again). I just slap on the factor 50 and a hat - though I really don’t look good in any hats 😕. Wishing you good luck, and better health.

[Pitchperfec]

Hi there, my mums journey sounds very similar to yours, she’s 76 diagnosed Oct 21, surgery & chemo followed by Avastin, recurrence in Oct 23, more chemo and this week started Niraparib, the potential side effects sound very daunting but lots of ladies seem to tolerate it well with very few problems. My mums only on day 3 and so far so good, it’s very closely monitored especially over the first few months. She’s in good health despite the recurrence with very few symptoms other than a few occasional aches and feeling a little more tired. Praying it works for mum for as long as possible. Wishing you all the best with your treatment xx

[PaumicB123 in reply to Pitchperfec]

Thank you so much for your reply and helping me decide

[Schnauzer19]

Hi PaumicB123

I’ve been in Niraparib for nearly 3 months and so far so good. No nausea, only a slightly faster heart rate and BP a little higher but not out of normal range. Obviously achey joints and tire more easily but I had that after chemo anyway. You won’t be able to wait to decide unfortunately as you have to start it within a certain timeframe after finishing chemo, I’m sure it’s within 12 weeks but I can’t remember for sure what my oncologist told me 🤔. I started it about 10 weeks after finishing chemo. Try not to be daunted by the side effects, if you read the side effects of over the counter painkillers you would be put off, you may tolerate it well, I'd give it a go.

Sally x

[PaumicB123 in reply to Schnauzer19]

THANKYOU I will think about it didn't know there a time frame

[delia2]

Hi. PARPs can cause fatigue and a little nausea but they can reduce the dose. For me Olaparib was a game changer. It gave me four years ned which I would not have had otherwise. It’s a tough decision but really think it through.

[PaumicB123 in reply to delia2]

Thank you so much for your reply I will think really hard about deciding at the moment my body recovering

[Dunsinane]

Hi, I’ve been on Niraparib for 18 months with quite a few stops and starts. Like you, I truly felt I really wasn’t ready for any more treatment after two major surgeries and chemo but my oncologist encouraged me to try it. She said I could always stop any time I wanted to, but that it worked best if it was started within 6-8 weeks following chemo.

I started on 200 mg but the dose was reduced to 100 mg because my platelets kept tanking. Over many months of trying to increase the dose I am now able to tolerate 200 mg. My main side effects have been high blood pressure, some difficulty sleeping and fatigue - luckily no nausea. It also makes you more sensitive to the sun, so I need to wear a high SPF sunscreen in summer.

Wishing you all the best with your decision!

[PaumicB123 in reply to Dunsinane]

Thank you so much for your message it helping me decide as I still not over treatments I've decided have few weeks to think about it really appreciate your help

[Dunsinane]

I know it’s a lot to take in and deal with, especially when you’re not feeling your strongest. Hang in there!

[PaumicB123 in reply to Dunsinane]

Thankyou for your help