Hello

Hi nalini and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the experience you're looking for, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list where it'll be more easily spotted.

I don't know if you've already done this but of you type 'niraparib' into the search bar in this group you'll find quite a lot of previous posts which mention this drug. You could then have a read of the more recent ones and reply to the poster if you wanted to ask more questions.

While you're waiting for replies, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi nal, I am taking 200mg daily of Niraparib, I was diagnosed with oc November 2021, had chemo & op was clear as for side effects I seem ok I do seem to have anxiety but is that the tablets or me worrying they might not work,, sleep is a little disturbed again me worrying about the future... But for me I will give anything a go if it gives me a bit longer, good luck and let me know how you came on..oh forget to say been on them for three weeks and my kidney test was low? But said not really bothered at this point so time will tell for me. X

Hello Holly,

Tx for your response which I have just read. Having taken niraparin 200mgs theen reduced to 100mgs because of side effects I did not like ,I discussed with family and decided to discontinue niraparin as my. Braca gene was negative.I feel a lot better now beginning to enjoy my life which has been on hold. My blood results are also normal now inc CA125.  I took  niraparin for about 5months.

The only thing bothering me is peripheral neuropathy which started soon after starting chemotherapy (Dec 2021)  Just learning to live with it at the moment.I am on some treatment which is not that helpful  No other side effects. Hair growing back very nicely

I was diagnosed with ovarian/falopian cancer in September 2021.

Sorry for not responding earlier but love to hear how u r getting on now.

Nal

Ps would also like to hear from anyone else suffering from neuropathy following chemotherapy nd how they r coping.

Hi Nal

i have been on Niraparib for 3 weeks now. The side effects listed are very off putting. It was suggested I take this to try and control the cancer. I had ovarian clear cell Stage 1A. I had a full debunking hysterectomy followed by 6 sessions of Chemo. I was declared clear after a Ct scan. However 12 months later after a Ct scan it showed cancer cells at the top of the omentum on my left side. Another course of 6 sessions of slightly different chemo when I didn’t lose my hair. Then Niraparib within 8 weeks. However because I do not have the cancer gene it may not be as effective and may have an effect on any future chemo.

so far. My white blood cells, platelets, neutrophils have dropped. So I feel fatigue more easily so have to plan my day in order to take a rest. Also my blood pressure has increased but not dangerously yet and my red blood cells have increased also.

everyone reacts differently to this drug but I seem not to have had many adverse effects so far. I am monitored every week for 4 weeks then if still ok go onto once a month checks.

it is a tough decision as to whether or not to go onto this drug. If it really affects my quality of life I may ask to come of it. I am on 200 mg a day.

Hope you make the correct decision to suite you.

• good luck and keep hoping. ️

Dahlia 2270

Hi Hollybud. I have been taking Niraparib for 3 weeks now. 200 mg a day. Like you sleep was a problem and anxiety about the future. I have had a couple of sessions of hypnotherapy nd a couple of Reiki sessions. Both have really helped me. I sleep better and don’t feel anxious or worrying about the future. I find getting involved in the community and MacMillan groups as well as Maggie a big help and it is good to talk to other women with cancer. Diagnosed with OC  and had two  sessions of chemo as the cancer cells returned a year after the last chemo.

all we can do is live in hope and live every day as well as we can and enjoy life.

take care. All the best of wishes. ️

Dahlia 2270

Hi Nal

I have peripheral Neuropathy which developed after my first chemo. I have a strange numbness in my toes (it feels as though socks are all twisted around my toes). It plays up at night and I seem to get restless feet. I usually take a couple of paracetamol and it settles enough for me to fall asleep. I have also had a strange tingling in a couple of fingers occasionally. Apparently there is no cure and most cancer suffers I talk to at my local MacMillan Womens group who have had chemo seem to have the same.

I suppose it is a small price to pay to try beat the cancer and live life to the full.

hope this helps. Take care.

Dahlia 2270

•  Hello Dahlia 

Thanks for your response. It is helpful to hear that u too, like lot of other women have been suffering with this horrible neuropathy,  and am not alone.  I often wake up in the middle of the night with very restless legs. I too feel Panadols helps. Thankfully apart from slight fatigue and the neuropathy, I am beginning to  feel better wanting to take interest in doing other things.

I have an appointment end of May with my oncologist when I will be assessed for blood test etc. So fingers crossed I will have good results Am also planning to start some Reiki  sessions from next month. Also, am doing regular yoga regularly which helps to keep anxiety away.

Will keep you posted.

Nal

Morning lovely,  I to have started to get involved in some kind of activity ie., Relaxation therapy, mind over matter! hopefully

Sorry pressed wrong thing!  As I was saying:- I am going to start session 17 may, I think it will help, as I am not sleeping well at all just an couple of hours then wide awake always disturbed nights, same as you my legs, feet start to play up, it does not rain it pours sometimes... plus I found lump in neck, which is getting looked into scan on Wednesday,. Problems, problems! Only positive I am taking is first time around when diagnosed with 4b oc I wasn't aware I even had it, I was totally in the dark about treatment, chemo etc., and I got through that.. I try and look forward to every little thing, I have two grandchildren who live with us and my word I was blessed twice with these two, they are my heart and keep me going each and every day (18)&(19) years old.. that's what we must do count our blessings rather than go down the negative road, let's hope are classes give us calmness and helps us to get a decent night's sleep.. have a good weekend!!!

Sorry two messages,  I'm all over the place, blame the tablets! Haha.