Info request on Non Brca - Parp inhibitors Olap... - My Ovacome

My Ovacome

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Info request on Non Brca - Parp inhibitors Olaparib, Niraparib etc trials?

Hello,

As I seem to be coming up to a recurrence I wondered if any of you any info on non BRCA use of PARP INHIBITORS: Olaparib, Niraparib etc.

Which hospitals are doing them?

I want to be prepared before I see my oncologist in 3 weeks time.

I've so far had

1st line: Carboplatin/Taxol

2nd line: Carboplatin/Gem/Avastin

Currently drug free.

Any help very much appreciated.

Kind regards, Lisa

14 Replies

Hi Lisa there is scope for you to get niraparib via the nhs but as far as I’m aware olaparib is not available or funded via the nhs only as part of trials. For the niraparib the Nice guidelines are that you have to be platinum sensitive (so at least 6 months remission since your carb/gem) and then you may be eligible.

If you are eligible then all hospitals should be able to prescribe the niraparib for you.

There are a number of trials involving olaparib so it may be worth you researching where they are. I know the Christie in Manchester certainly have them currently one of which is the CEBOC trial which I was on.

Good luck and keep us updated with how you’re doing xx

Bev

in reply to BeeWild

Thank you so much for the info, very much appreciated. I’ll chat with my oncologist and see what he can offer, I’ll take it from there. I may do a bit of research into North East Hospitals and see if things differ.

A bit of homework for me there. XxX

I'm on Niraparib and I'm under St James hospital Leeds Bexley wing.

in reply to Annr5h

Thanks Ann, I’m in the North East do not impossible. Thank you xxx

Hi Lisarobson

I’m on Niraparib have been for nearly 5 months with little side effects. I’m at Addenbrookes now but my local hospital would not give it to me saying I didn’t fit the criteria. I asked for a second opinion and they said I did. Don’t let them tell you it’s a funding issue either as it’s the government who pay for it not the hospital. Keep fighting for it. I’m glad I did as they said it’s working my tumours have shrunk by 20% at last scan with no new growth. Good luck will be thinking of you. Keep us posted . Big hugs M🙋

in reply to Missmuffet32

Thanks so much, are you BRCA negative too? Lisa x

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Missmuffet32 in reply to

Hi again

Yes BRCA NEG so you should be considered for Niraparib. Xx keep fighting the battle x

Yes will do, I most likely could have had it after last recurrence but was fighting for Avastin during chemo and missed this. haha!

Have you had a molecular profile of your tumour? This will tell you which inhibitors are suitable and also immunotherapy.

in reply to Bliney

How do you get that? I was diagnosed in 2016

I had one from Foundation One, keep meaning to blog about it, can be useful. Their website had a couple of useful papers and see my previous posts.

Hi Lisa

Are you being looked after at the Freeman Hospital in Newcastle? I believe there are at least two non-BRCA ladies at the Freeman taking niraparib. Have you been to the Gynae cancer support group meetings at the Maggies Centre across from the hospital? The next one is next Tuesday 11 June at 11.00. You can just turn up.

in reply to WoodyB

Hello, I’ve never been. I’m away next Tuesday but will look up the next one and pop along. Do you take it straight after you stop chemo? X

WoodyB profile image
WoodyB in reply to

Hi Lisa

The support group meetings are at 11.00 on the 2nd Tuesday of each month. They're a good crowd.

You start PARP inhibitors around 4 to 8 weeks after finishing chemo. Hope that helps.

I think there may be clinical trials involving a PARP instead of or in combination with chemo.

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