I would like to chat with someone with the same cancer type and discuss Niraparib drug treatment

Hi Dahlia2270 

I don’t have experience to share, but there have been recent discussions in other posts from ladies on this drug. Try this link to connect with them-

Niraparib

If you type niraparib into the search bar(the box beside the magnifying glass at the top of the page) you will find all the posts in the group where it is mentioned.

I can imagine you are in a difficult position having to make this decision, and I hope you’ll find other ladies in the group to chat this through with.

Sarah xx

Hi are there any recent chats please? The ones I have seen seem to be quite old

Dahlia2270

Hi Dahlia2270 

If you click on the link in my post to you (click on the word niraparib) it links to a post which has a reply from today and 3 days ago. It’s the most recent I could find.

I will tag the ladies in the post- Cats23  and Hollybud and hopefully they will pick up that you are looking for info.

Sarah xx

Morning,  I understand your anxiety about Niraparib and what is best to do... I'm not an expert but I have been on Niraparib for 6 months now, however, I was diagnosed at stage 4b, had chemo and debulking op, then on Niraparib.  I have no side effects and all seems good ( so far)  as you were 1a, these tablets may well be right for you and possibly only for a short period, I would discuss your concerns with your oncologist i.e, how long you would have to take them for and if after taking them chemo not so effective (I did not know that)... But most of all be positive it sounds like you are on top of this.. 

Good luck! 

Thanks Hollybud. I am having difficulty finding my way around this chat site. I am not very techy and get frustrated when I don’t manage to find my way around sites. It is good to hear that you haven’t had many problems with Niraparib. I am going to try and speak to my Oncologisy at St James’s hospital again as I feel I need a more thorough discussion about the pros and cons. I am currently NED after my second dose of chemo.

good luck with your treatment

Dahlia 2270 xx

I know all this is a heavy load to bear, and very scary! That's fantastic no evidence of disease, ! Great news! Definitely ask for advice, as for me I put all my trust in medication I get, and I have faith in my heart! Sending warm wishes and I hope all your worries will so be sorted! 

Hi Hollybud

I try so hard to keep positive and most of the time I succeed. Just occasionally I have a blip and feel scared. I plan events to look forward to. Little breaks away. Helping with litter picking in my neighbourhood ( makes me feel like I have achieved something ). I love being outdoors and spring is well and truly here! It is so beautiful to see all the flowers, the trees budding and the birds singing. So much to look forward to.

Yes I know exactly how you feel same for me, you do start to look at things differently and realize your blessings, don't beat yourself up about feeling down we all go through ' bad thoughts times' my usually nighttime, there is so much negativity around overian cancer (the silent killer etc.,) and statistics are also deflating no wonder we are frightened, however, there are also good stories out there I've read of women with oc surviving 15 years + who were stage 4, which gives me true hope!   Others 20 years!! ... That's the best thing to do go out in fresh air appreciate every blessing show the world you are a true warrior! Treat yourself my is cream cakes! and never feel guilty when you have a low day get cozy watch a good film and pamper yourself!!  Xx

I was diagnosed in Feb 21 with ovarian cancer aggressive stage 4, I had ultra radical debulking surgery, bowel resection so I have an ileostomy which is reversible, 6 cycles of chemo and was ned up until January this year and its back.

I started naraparib in January 22 300mg unfortunately it caused me more problems than it did good, I ended up with a blood transfusion I'm march 22 although I was on and off the drug cos it affected my blood, I tried again after blood transfusion on a 200mg dose still affected me badly by June it was stopped for good, in July I was told the cancer would return and all the team could do was mo it or me.

I'm now waiting to find out if I can have surgery, I have 3 parastomal hernias which hopefully get repaired, four tumors need removing and stoma reversal, which I'm not holding out much hope for.

If you decide to have the drug it may not agree with your body, so you need to discuss this with your team.

Hope this helps

Hi Pam ela

Bless you. It seems you have been through so much already. What does mo or me mean in the sentence ‘all the team could do was mo it or me’?

I have made the decision to try the Niraparib 200 mg. It started on 6 April. So far blood pressure increased slightly, RBC up WBC down, Neitraphils down. I have tummy ache and a lot of gurgling in my tummy. Motions still regular though which is a relief. I don’t know what to take for the tummy ache or ‘’growling’ as paracetamol doesn’t help. Any ideas?

I am being monitored weekly and then monthly with a Ct scan in 3/4 months. For the time being a hernia op is on hold but I Amon the list. Not sure If I will go ahead with this although I get stomach and back pain most times when out walking or standing still for long. Sitting down on a portable camping for a few minutes helps ease the pain for a while.

All the best of wishes and hope for any future ops.

Dahlia 2270 x