Niraparib treatment

Hi Roselea 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’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, 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.

I've also done a search to find previous posts which mention niraparib and found these for you to look through.

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 Roselea 

Did you get a chance to read the reply from the nurses to your question about this? In case you didn’t, the link is here

Niraparib

I’m aware from the group that several ladies have spoken about being on Niraparib, but it’s not clear if they are at the same stage in treatment as you are. However this reply will give your post another boost and hope you’ll hear more from others.

Sarah xx

I had the same cancer and 4 cycles of chemo then the big op and then 2 more chemo.  I was then put on Niraparib which I was told I would be taking for 2 years.  After that there would be no further treatment unless the cancer returned.

Unfortunately for me I just couldn't take it.  I started on 2 Niraparib each evening and was so sick that the dose was halved to one a night.  But that too made me endlessly sick so I have given it up.  (I had the anti-sickness pills every morning but they just didn't work)

So well done you for getting through 3 years of the Niraparib so successfully.  

Hi Anne

Thankyou for the info. I will definitely check my profile and keep it up to date. 

Hi Sarah. 

I have read and responded. 

Very useful information. 

After contacting a few departments and individuals to raise a concern I have been offered an appointment next week to discuss with consultant.

Will keep you to dated

I’m glad to read you have an appointment to discuss this further Roselea 

We might be patients, but we have a voice which needs to heard. We deserve to be given reasons for particular actions when it affects us as individuals.

I will look out for your update and hope others will find it helpful also.

Sarah xx

Hello Spooks

I'm sorry the Niraparib made you feel so poorly and your not able to take it.

I started on 3 daily but couldn't get up my stairs or walk around the garden for being breathless. I still have sore skin and rashes on my feet. I've had three lots of eye surgery, dry and sore mouth etc etc.  However I didn't feel sick.i took it at night before going to sleep and I think that helped a lot.  Unfortunately last year I did become poorly and thought, right this is it now. I was in hospital on two occasions with Severe stomach pain and vomiting the contents of my bowel. I was diagnosed with bowel obstruction, unsure if this is cased by the peritonial cells sticking to the bowel or original scar tissue from surgery. I'm not able to eat solid food and use the 4 stage bowel diet. I must say it's been fantastic. I've not had back ache, reflux or bloating and I actually feel so much better in myself.

Are you having no treatment at all? 

Do you live in England?

How are you today?

We are all different, aren't we?  Different symptoms and different reactions to the cancer.  And different reactions to the treatment.  Yes, I live in the south west and I am now having no treatment at all.  But I feel that the cancer has been defeated and I am hopeful it won't come back.  

I have now done ten days without the Niraporab and today is the first day in a very long time that I have not been or felt sick!  

Please keep us updated on what your consultant says.

Spooks