Nariparib

Hi Picklewigs 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group and don't have any experience with niraparib, 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 again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date 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.

Hi Picklewigs

I am sorry to hear that you are having some side effects from your new treatment.

I remember having trouble sleeping during some of my treatment and it is really hard when the tiredness builds up. Loss of appetite can also be tough.

This link may help with some general info about the treatment. It does mention both about the sleeping and the change in appetite. it has some helpful advice. 

Niraparib (Zejula®) | Macmillan Cancer Support

I also searched for Zejula on the community as this is another name for the treatment. 

The link below will take you to previous posts that may be of interest. Sometimes it can help to read of peoples previous experiences. 

Macmillan Online Community

I hope this helps a bit and that your side effects begin to settle.

Do give your hospital a call if they do not or if they become worse. 

Jane

Hi picklewig. I had paclitaxol and carboplatin chemotherapy then surgery and then chemo. I was diagnosed with HRD after the surgery and started taking Niraparib after the last chemo. 

It will be 3 years in March taking Niraparib. At first the side effects were overwhelming. Sores in my mouth. Rashes and red dry skin on my feet, bloating and reflux, back pain and so breathless i could only take a step at a time etc etc. my dose was lowered from 3 to 2 and that was much better.

I did have insomnia to start with, but that got better over time. I take my Niraparib just before I go to sleep. There are still occasions when I wake around 4am and just can't go back to sleep. I do a crossword instead. 

Niraparib has worked for me. Initially I wasn't expecting any treatment just palliative care at that time I was given 6 months.  However they offered chemo and surgery then Niraparib and here I am very lucky to be here at 3 years..

Persevere if you can and maybe lower the dose. Good luck 

Thanks, I'll take a look

Thanks, they lowered the dose as kidney problems. Started again yesterday and already knackered. I'm taking it in the morning to see if that helps, was taking it before bed. Hopefully the symptoms won't last too long and I'll have to pace myself in the meantime 

Hi picklewig

Sorry to hear your feeling tired. I know it's hard but please try and persevere if you can. Good luck 

Hi picklewig.

How are you feeling this week?

Hi my wife is about to start taking Niraparib how are things with you now.

Thanks

• Hi, much better thanks. Bloods yesterday so see what they say. Don't even know I'm on them now they've gone down to 100mg. I've been taking it in the morning and my sleep is much better too. Thanks for asking 

Now on a lower dose I'm totally fine with it. Although it suggests taking it in the evening I take mine in the morning. What dosage is your wife on? I started at 200mg but now 100mg