PARP: Anyone got PARP? Is it effective? How long... - My Ovacome

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Harp-1 profile image
14 Replies

Anyone got PARP? Is it effective? How long need to be taken for an ovarian cancer stage 3 and how expensive?

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Harp-1
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14 Replies
Katmal-UK profile image
Katmal-UK

Hi. I have been on Olaparib since beginning of Jan 2014 on a trial which has come to an end but I now continue on the drug. I dont pay for it but understand its in the region of £60k per year. I have heard some ladies have self funded for a year then are able to access the drug on compassionate grounds from the manufacturer though have no details as to how to access that. I think its best if you speak to you oncologist regarding accessing a parp. Best Wishes, Kathy xx

Lizzieanne profile image
Lizzieanne in reply toKatmal-UK

Can we get this free on NHS. Read a few positive posts on this drug and I may have to go on an inhibitor so very interested in the good results this one seems to have

Katmal-UK profile image
Katmal-UK in reply toLizzieanne

Hi, yes I believe its been approved by NICE as a maintenance drug but im not sure of the criteria for being given it. Prob best course is to contact your Onc or Macmillan or the Ovacome team to see if they know the criteria. xx Best wishes xx Kathy xx

Lizzieanne profile image
Lizzieanne in reply toKatmal-UK

Will do. Thank you

Newbie_2020 profile image
Newbie_2020

Here are the NHS criteria for prescribing Olaparib

uhs.nhs.uk/Media/SUHTExtran...

Most criteria are also applicable for Niraparib but it is prescribed for those who have tested negative on the BRCA genetic test.

Lizzieanne profile image
Lizzieanne in reply toNewbie_2020

Thank you v much

I’ve been on Olaparib for 18 months. I’m BRCA 1.

I live in Ireland. We have a drugs scheme. I pay €124 per month for all my drugs. I know the real cost of them is thousands per month but I don’t know the exact cost.

Anne 🤗

Lizzieanne profile image
Lizzieanne in reply to

Gosh that's interesting and a great idea. Thank you

delia2 profile image
delia2

I’ve been on Olaparib for five months. I’m in Massachusetts. I know it would cost about 16000 dollars a month here but the manufacturer, AstraZeneca, has a generous way to help fund those without insurance. In the UK you may need to be BRCA + to go on it but you could get Niraparib. Not sure about Rucaparib which seems to be getting more popular.

Lizzieanne profile image
Lizzieanne in reply todelia2

Thank you

win_56 profile image
win_56 in reply todelia2

Hi I am going on Rucaparib after first recurrence. I'm platinum sensitive and have had a good response to chemo. My oncologist said at guest I would be in Niraparib but because of the covud situation she has changed to Rucaparib because it's lesser side affects and not so hard on the bloods and apparently less hospital visits for blood work. She said the efficacy is just as good as Niraparib and I clarified this with the ovacome team.

Lizzieanne profile image
Lizzieanne

Thank you

Harp-1 profile image
Harp-1

Thanks everyone,

I took Zejula for 2 months at 200 mgs. daily. I am BRCA negative. My hemoglobin dropped so low that I had a blood transfusion. I’m off from Zejula for a week and then more blood tests. Don’t know what the doc will do next.

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