I started Niraparib February 27th after finishing 6 months of carbo/Caelyx for a recurrence. I still had 3 tumours but they’d had reduced by more than a 1/3 so I qualified for Niraparib. I only took Nirapabib for 2 weeks when my platelets dropped to 9 so had a blood transfusion immediately and it rose to 49. I have been told not to take Niraparib for the Foreseeable future because of the Coronavirus and now terrified the tumours are still growing inside. I’m having almost constant hunger pains both before and after food. My appointment has been deferred with the oncologist and I fear the next appointment (next Thursday) will be a telephone appointment. I’m not sure what to do and wondered if any of you ladies have had a similar pain after Niraparib. How long do the effects of it stay in your System after it’s stopped? Or could it be something else. Sorry if I’m repeating myself here but mind is in turmoil.
Love to you all Angela xxx
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My Haemoglobin was very low after 1 week on Niraparib, so it was stopped for a week and I had a blood transfusion. I started again on wk 3 and am currently ok with it at wk 6, but must self isolate for 12 weeks. If you are in pain you should ring your CNS nurse and ask for a clinic appointment, you may need a CT scan, even if its to put your mind at rest.
Thank for replying Lyn. I doubt if I’d get an appointment they’re trying to keep us out of harms way. I think I’ll ring the CSN tomorrow though or I’ll be whittling all weekend. So much else going on in the world at the moment it hardly seems fair to expect any kind of special treatment. Stay well Lyn. Your reply was very interesting and reassuring. Thank you again
My appointments are by phone only, but they did say if I become symptomatic to ring and they will have me in clinic. Hope you get some reassurance soon. xx
Hi. I’m sorry the virus is messing with your treatments. How could your oncologist know that chemo doesn’t work well after you’ve had the virus when it’s a new virus? That seems crazy! Your team should be relieved that you’ve come through the virus so well!
Hi Laura, I completely agree. The Coronavirus is terrible but so is cancer. I didn’t get chemo no. 6 due to the virus and was then due to have an appt. today and start Olaparib (6 weeks since chemo). I got a call on Tuesday to say the clinic Dr. is self isolating but they’d try and cover with another Dr. I then got a call yesterday to say the Dr. who was covering is now also self isolating so next potential appt. Thursday next week. I feel completely gutted at the way this is all going.
SOUNDS LIKE YOUR DOCTOR NEEDS AN ATTITUDE ADJUSTMENT. SOME HERE ARE HAVING DELAYS IN THEIR TREATMENTS ONLY WHEN THEIR BLOODWORK IS TOO LOW (ABS. NEUTROS AND WHITE CELLS.) THEY WAIT FOR THEM TO COME UP AND THEN RESUME THEIR TREATMENTS. I DON'T THINK ANYONE EVER HEARD THAT IT DOESN'T WORK WELL AFTER VIRUS. AND IF YOU THINK ABOUT IT, HOW WOULD ANYONE KNOW THAT? THIS VIRUS IS NEW. YOU HAVE HANDLED SO MUCH, SO WELL,
DON'T GET DISCOURAGED. I'M SURE A STRONG LADY LIKE YOURSELF WILL GET THROUGH THIS. WISHING YOU GOOD HEALTH!
I'm sorry to hear that you're having such a difficult time at the moment.
We're in regular contact with NHS England and coalitions of cancer charities and are updating our website daily with information at ovacome.org.uk/covid-19-and.... We aren't aware of a connection between COVID-19 and how well chemotherapy works. You can ask your oncologist for more advice at your telephone appointment.
Please do get in touch with our Support Service if there's anything you want to talk through.
Hello, I’d phone and ask for a clinic appt. next week. I don’t think it’s asking for special treatment as you have discomfort which is concerning you. Put yourself first. As long as you are careful at your appointment and wear gloves and cover your face if you can you should be fine. Good luck xx
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