Advice please re: Niraparib (Zejula) side effects (i.e. bloating, nausea & vomitting & stomach pains?)

[Doughnut21]

Hello ladies, I hope you are all keeping as well as possible in the run up to Christmas!

I was wondering if anyone who's been treated for Ovarian / Peritoneal Cancer has had horrible side effects from the Niraparib (Zejula), maintenance drug? I was given Niraparib 200mg after a 1st recurrence in September, 3 months ago, but then due to it lowering my blood platelets had to stop it for 2 weeks until my platelets normalized again.

Then I was advised to take a lower dose of Niraparib (100mg = half the dose) for that reason. I was feeling okayish for a couple of weeks on the lower dose, but then a couple of weeks ago started experiencing a lot of stomach aches, bloating and nausea and vomitting and then had to stop the lower dose drug for 4 days, until nausea went off. But then, 3 weeks later, nausea and vomitting has been very troublesome again and now I have been advised to take another few days break, as have vomitted a lot over last couple of days.

I just wondered if anyone else, has had these horrible side effects from Niraparib drug (and even on the lower dose 100mg, which I'm taking?

I've been told this is the only 'maintenance drug' available on NHS for 1st recurrences, so I'm obviously very worried, as I don't think i'm tolerating the drug at all well.

I was offered Avastin / Bevacizumab last year, but they won't prescribe it again for recurrences on NHS.

Does anyone know if there are any other drug trials / treatments available.

Also, my CA125 blood markers had jumped up and doubled, a couple of weeks ago, so my consultant had sent me for an ugent CT scan last Thursday and I'm awaiting the scan results after Christmas, on Thursday 29th December. Hoping and praying that all is well.

Anyway, I hope you are all feeling as well as possible and able to enjoy Christmas as much as possible.

Love & hugs,

Debbie

[Lyndy2]

Hi Debbie, sorry you are suffering these nasty effects. Some do unfortunately find that Parp inhibitors do this to them. It probably isn’t helpful to say that your body will get used to the drug in time.

I would take issue with the idea that this is the only option. Another Parp inhibitor Rucaparib which is pretty much the same is rumoured to have fewer side effects…that’s what I was told.

Sometimes medics can dismiss effects such as vomiting which we patients find too much to bear. If you feel you are being dismissed I suggest talking about your mental health because your Doctors have a responsibility to look after that too and if you specify the impact as a mental health issue it often prompts a more holistic response.

Hop that helps xx

[Teazles]

ask your Consultant if you can try rucaparib I was changed from niraparib to these because of awful side effects of niraparib. I’ve been on the lowest dose of rucaparib since start of November and I have no side effects. What type of ovarian cancer do you have as it can depend on that as to what medication you can have. I hope you get it sorted thinking of you and hope you have a good Xmas xx

[Reksio77]

Hi Debbie, So sorry to hear that you are suffering from such severe adverse effects while on Niraparib. Maybe you should switch to Rucararib? Usually ou bodies get used to PARP inhibitors after couples of weeks. Do you take antinausea meds? They help a lot. I'm living in Switzerland, and started Niraparib 3 weeks ago. Luckily no side effects at all, even my platelettes are ok. Do you have any gene mutations? BRCA1/2? HRD positive? Others (MSI,MMR,HER2, FR-alpha? There are some promissing immunotherapies for patients with mutations mentionned above. Take care and have a Merry Christmas

[Alice77]

After 6 months I am finally managing the side effects better so it does improve. I rarely have nausea but the insomnia has been the worst problem for me. Whilst I do have the odd sleepless night Ion general I now get enough sleep and feel much better as a result. The neutropaenia gets worse e every so often but is manageable with Filigrastim injections five days of every month. It is worth persevering. Best Wishes.

[LesleyGB]

Hi Debbie

I am on niraparib and after 2 months have only had constipation (a bowl of prunes is my best friend!) and feeling very tired (going up one flight of stairs made my legs ache and made me sweat!) I did take a couple of days off (my CNS had previously told me that this would be okay) and felt better. I am on 200mg once a day.

When I was put on this, I did ask my oncologist what would happen if I had bad side effects and he said there were others to try, and if I couldn't cope with any of the parp inhibitors, I could have more chemo (which gave me no side effects at all).

I would definitely speak to your Nurse or oncologist. Good luck! x