Hi, new oncologist says its fine to stop my PARP inhibitor, niraparib. Been on it for over 3 years with no problems. Is it best to stay on ?

[TIDAS]

Hi, new oncologist says its fine to stop my PARP inhibitor, niraparib. Been on it for over 3 years with no problems. Is it best to stay on ?

[lesleysage]

Hello TIDAS,

Having never been on a PARP inhibitor myself, my only suggestion is to either ask for a second opinion or ask the Ovacome Support Team (freephone 0800 008 7054) if they have any information?

Maybe someone in this experienced group of ladies has some experience to share? x

[mrstadpole in reply to lesleysage]

I have been on Olaparib for 3 and a half years. It was agreed I could stay on them .I'm BRCA 2+ve.I understand they are hugely expensive so wonder if funding is an issue in your region?

[TIDAS in reply to lesleysage]

Thanks for that advice !

[KimLJ]

Hi there, I’m no doctor but as I’m about to commence on these I’ve been reading about them. They are to stop OC coming back so no don’t stop them!! I’ve been advised I will take them and if I get a recurrence I won’t be offered them again. So really look into this, second opinion etc. Good luck xx

[Differentforgirls]

Hi TIDAS 👋🏼

Thinking you should ask your new oncologist as it’s still working why come off it? I do know that many oncologists stop it after 2 years but not sure why 🤷🏻‍♀️

Hope you find out more & can stay on it for as long as you’d like to.

Best wishes xx

[TIDAS in reply to Differentforgirls]

Right? I assume it is because there are no studies that support more than 3 years and the risk of blood cancer. UGH

[babs1120]

Hello TIDAS, I was told I could stay on it for as long as it worked. I've been on it 18 months but after a phone call with my Oncologist she said something about new guidelines being reduced to two years. when I questioned her on it she said we will cross that bridge when we come to it. I wondered if it was because if it stopped working you couldn't go back on it but if you came of it and had a recurrence down the line and had the 6 treatments of chemo again you may be able to go back on the parb as it didn't stop working. That's what I am hoping for any way. Please post on here if you find out any more information about it. Good luck x

[TIDAS in reply to babs1120]

Thanks for your reply, Interesting, so you are saying that you think that you may need do another round of chemo? before they would put you back on it?

[babs1120 in reply to TIDAS]

I don't know but I was thinking that if you stop it before it stops working you may be able to go back on it as my Oncologist said I was free to stop it at any time I wanted. When I first went on it she said she had people who had been on it for 5 years. But I do know if it stops working while you are taking it you can't go back on it. But I really don't know.

[Liz9526]

Hello, I live in the U.S and have been on niraparib for more than 2 years and will stop at 3. At least in the U.S., the recommendation/guideline for parp as maintenance after frontline is 2 years for olaparib and 3 years for niraparib based on clinical trial data and the potential risk of developing blood disorder. However parp given after recurrence, I understand you can continue as long as it works. Maybe similar case in UK?

[TIDAS in reply to Liz9526]

Thanks for your reply. I just got CA 125 and it is creeping up. The guidelines are confusing to me - I will need to talk in detail with my Dr.about getting back on it but I have been on it over 3 years. It's all such a double edge sword - damned if you do, damned if you don't.

[Liz9526 in reply to TIDAS]

I agree, guidelines are just guidelines, it is an individual decision in consultation with one’s doctor. Also parp like niraparib for maintenance after frontline is relatively new, there has not been enough time or data to provide clarity. I felt like we together with our doctors are just making it up as we go…

[delia2]

I was on Olaparib for three years after first recurrence. Originally it was supposed to be until it stopped working but I was taken off because of concerns about blood cancers.

[Leniko]

I can only tell you my experience with being on a Avastin. I was on it approximately two years as maintenance. Then, my Onco said, “Why don’t we take a break in case we need more in the future”. My cancer returned not too long after stopping. So , in my case, wish I had stayed on maintenance therapy.

[Pianoplayer731021]

Hi Tidas, I was on Niraparib for three years with side effects and taking breaks on and off from taking it. My Dr. stopped this and now I am seeing a hematologist and having blood tests every four weeks. This parp can cause blood problems for some people. I have had a few blood transfusions and UTIs while on this. My hematologist suggested that my iron storage was very low. I had a four hour iron infusion which made me feel much better. They will just keep monitoring my blood and right now I feel alright. Sending my best wishes if you begin niraparib. Three years for me really wasn’t the best timeline, however; some ladies might do alright. Donna xx

[Winks]

I have been on Niraparb since Dec 2018! 5 years. It has worked well for me despite some side effects. My CA125 and other bloods are checked every 3 months. My Oncologist seems happy for me to continue until it stops working...