Niraparib

[megb246]

Hello ladies,

I have been on Niraparib for four months with little side effects or so I thought. Recently I have been having heart palpitations and racing heart bit only generally when I am I a reclining position?. Had ECG last week and today my Dr phoned and has referred me to emergency cardiology appointment as ecg was not very good . Has anyone else had this whilst talk g Niraparib? Thanks meg.

[Sbhsbh]

Hi,my wife had a heartbeat with niraparib like you. her doctor changed the dosage-decreased and the problem was solved.

[megb246 in reply to Sbhsbh]

Thankyou ... my doctor left me thinking I was going to have a heart attack any mintue.

[rosebine]

I am due to start Niraparib and I suffer from irregular heart beat any way and paroxysmal fibrillation so Im quite anxious. Also my blood pressure is high even wit h medication !Hope you get sorted with reduction in dosage.

[megb246 in reply to rosebine]

Thankyou .. at least you will be Closely monitored for first month so any problems can be sorted

Have fingers crossed for you .

[bamboo89]

Niraparib gave me very high blood pressure and raised heart rate with palpitations too, and I must have had at least three ECGs during the 6 months I was on and off it, two of which were slightly 'off' but not majorly so. We fiddled around trying different blood pressure meds which did not keep the heart rate down, tried Verapamil which does both, but it irritated my liver so I had to stop that, I was off and on Niraparib all the time because of these side effects. Its a shame because the 200mg dose was working well, it drove down my CA125, but eventually I was told to restart at 100mg daily only. That helped with the BP and heart rate, though they were still higher than my 'natural' levels would be, but was not particularly effective for the cancer, with my CA125 rising about 30 points every two weeks, so I was told to stop it completely nearly 3 weeks ago now. I have no doubt the CT scan booked for next week will reveal progression, and I will have to decide whether to have more chemo or not...

I'd like to see some statistics in respect of how many women go on a PARP inhibitor and are still on it 6 months later, haven't been taken off because of side effects, just out of curiosity...

Are you still taking the Niraparib and does your Oncologist know you've been referred by your GP?

Miriam

[K95m in reply to bamboo89]

Hi bamboo

I’m on Niraparib for the last 38 months. In the beginning I had very high blood pressure and my liver enzymes were off the chart. We stopped It for 2 weeks and then restarted at a lower dose of 200mgs. I’ve continued on that and blood pressure and liver back to normal.

I suffer from insomnia and fatigue but manage both by taking a nap if needed. It’s not an easy drug to take but the side effects have lessened over time. I’m monitored every 2 months but other than that I lead a fairly normal life.

Kay

[Pianoplayer731021 in reply to K95m]

Hi Kay, [edited by a moderator]I live in the U.S. and have been on this for a year since last July. I had to stop it too once in awhile so my blood could get better. I have neuropathy in my feet, but that all started with carboplatin and taxol. I get tired once in awhile, so just have to adjust. Best wishes, Donna

[Pianoplayer731021 in reply to bamboo89]

Hi Miriam, I have been on Niraparib for a year now. They lowered my dose to 100 mgs., because of my blood counts. I had a blood transfusion a while back, because of low hemoglobin. I am doing ok now, so I will be monitored while I continue on this. My CA 125 has remained steady at around 14 or so. Donna

[rosebine]

Wondering if you have been on Niraparib for 2 years and it is working would they still take you off it ?

[TheOvacomeTeam Partner in reply to rosebine]

Dear Rosebine,

Any treatment has risks and benefits associated with it. There are associated risks with taking Niraparib long term. Treatment decisions are very individual and the oncology team will weigh up the risks against the benefits for a person. If anyone would like some information about the side effects and associated risks of any medication then please do call the support line and we can provide this information for further discussion with your clinical team about your own individual risk and benefit.

You can contact us by calling our support line on 0800 008 7054 or email at [e-mail]. Our support services are available Monday- Friday, 10am-5pm.

Best wishes,

Cathryn

Support Services

[Cumbrianlass5]

I have been on 200mg since March and have had very few side effects except insomnia. Changed to taking it in the morning rather than at night and that has helped a bit. Take Piriton every now and then to get a longer night's sleep. Get a scan in September to see if it is working. I do so, so hope it is as it has given me wonderful hope at holding back this wretched disease. Hope all goes well for you. Love and hugs x