Length of time to be on niraparib

[Tabby13]

Has anyone been on niraparib for more than 3 years? I have been on it for 2 years 8 months but have been told I will have to come off it after 3 years as the nhs won't fund it for any longer. I am on 100mg and it seems to be keeping me well.Thank you

[Realistic]

In my view it's just so wrong if it's about money. They are giving out millions of pounds of prescriptions every week for people that are not needed. I hope you get the funding to continue it shouldn't even be a worry. Love * big hugs SheilaFxxx

[delia2 in reply to Realistic]

Hi. I could be wrong but I don’t think it’s just money. I’m in the US and was made to come off Olaparib after three years (following a recurrence) because they don’t think it’s safe to continue. After a year I had another recurrence. They are getting stricter about time limits as time goes on and it’s for medical reasons. However the situation seems fluid at this point as they keep assessing the data. You could check with the drug company.

[Lind58 in reply to delia2]

Are you brca or hrd positive? I keep pushing for my mom’s oncologist to give us this option but she said in the United states they believe it does more harm than good.

[Tabby13 in reply to Lind58]

No I'm VUS , I will speak to my consultant nearer to when my 3 years is up and get her opinion. Thank you for your reply

[delia2]

My tumor is brca1 and I have a PALB2 mutation which is related to brca2. But it’s true about taking a PARP after recurrence. I don’t quite understand but I go to a top cancer center (Dana Farber).

[Pianoplayer731021]

Hi Tabby, I was on Niraparib for three years with side effects. I had to take a break once in awhile to build up my blood counts. I am in the states and that was my protocol. I am Five years NED now and I am doing well. I had chemos and a 5 1/2 hour surgery and was diagnosed at stage 3/4. I was also braca negative and my dr.suggested the niraparib. I was on 100 mgs, ; because the higher dose in the beginning was just to hard to tolerate. Hopefully, you will do alright. Sending best wishes, Donna 🥰

[Tabby13 in reply to Pianoplayer731021]

Hi Donna thank you for message. I have been lucky not having many side effects, just a bit of joint and muscle ache. I am due to come off drug next April so hoping to stay well. Good luck to you for the future. Jenny 😊

[Pianoplayer731021 in reply to Tabby13]

Thanks Jenny! Some of my side effects were UTIs along with low hemoglobin. The lower dose made my joints and bones feel better. Take care 😊 Have a blessed Christmas!

[Betti99]

I have been on Niraparib for 3 years and my Doctor suggest I continue. I am in the US was diagnosed with stage 3c ovarian cancer 4 years ago. I am blessed with no reoccurrences yet.

Best of luck to you!

[babs1120]

Hi Tabby, I have also been told that I have to come off the Niraparib after 3 years which will be in July, I have been fine all the time I have been on it, bloods are always fine and CA125 at a steady 14 all the time. I have had no side effects what so ever. When I first went on it I was told there were Patients who had been taking it for 5 years. Now my Oncologist says the Goal post have been moved. I don't know if it's because of health problems or Financial. It is too expensive a drug to fund one's self. Have you any more information you can add?

My Ovarian cancer was stage 3c High grade serous Carcinoma of Primary Peritoneal origin. It was inconclusive if it was a recurrence of a previous Ovarian Cancer 19 years ago.

Hope for both our sakes we can continue on it.

Best Wishes Barbara

[Tabby13 in reply to babs1120]

Hi Barbara Thanks for your reply, good to know someone else feels the same! My situation is very similar to yours, same diagnosis although mine was definitely the first occurrence. I have had very few side effects, I'm on the lowest dose. My ca125 level has been a steady 13 so well within the normal level. In theory I am on my last 3 months of meds which is pretty scary. I will be seeing the consultant so will put my case to her and see what she says. Just out of interest I am in the UK, are you?

Very best wishes

Keep in touch

Jenny

[babs1120 in reply to Tabby13]

Hi, Yes I am in the UK, I did a bit of googling and it does say 3 years for the amount of time it will be funded for. I am on 200 a day. Let me know what your consultant says. Best Wishes. Barbara