Olaparib question please? : Hello ladies, I have... - My Ovacome

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Olaparib question please?

Emalou71 profile image
15 Replies

Hello ladies, I have been told I can start Olaparib now that I have finished third line treatment, I completed 20 weeks of Carbo / Gemzar Feb 8th.

How long did you ladies who are on this drug wait to get started on it? I'm a little anxious as its been a few weeks now. Also how bad have are the side effects?

Many thanks in advance...

X

Xx

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Emalou71 profile image
Emalou71
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15 Replies
Katmal-UK profile image
Katmal-UK

Hi. Im on Olaparib on a trial and from memory started about 6 weeks after completing chemo. I have minimal side effects,low blood pressure which causes dizziness, I have bowel issues in the form of urgency when I have to go. Apart from that its very tolerable. I work full time and have been on it just over 4 years xx Good luck with it xx Kathy xx

Emalou71 profile image
Emalou71 in reply to Katmal-UK

Thank you so much, that's put my mind at rest with being 3 weeks :)

That's really fab news that you've been on t for 4 years, really gives me hope as I only had a 10 month remission from 2nd to 3rd line.

xx

Biscuitqueen profile image
Biscuitqueen in reply to Katmal-UK

Sorry to ask but I've searched on the forums about getting Olaparib's criteria but can't find much about it. Do you know what they are? From what I gather it can only be done after third line chemo which my mum finished at the end of December 2017. She hasn't had any remission really so I don't know if that affects it. Thanks

Katmal-UK profile image
Katmal-UK in reply to Biscuitqueen

Hi As far as I understand its after third line chemo and for those with BRAC gene. Mine is on a trial. Having said that I do know they are trialling for non-BRAC carriers. I would suggest you or your mum talks to her onc or goes onto the Cancer Research website and looks for clinical trials. It ma not be Olaparib, there are other Parp inhibitors being trialled or indeed other drugs. I wish your mum all the very best. Kathy xx

Biscuitqueen profile image
Biscuitqueen in reply to Katmal-UK

Thanks so much Kathy :)

in reply to Biscuitqueen

Hi BQ, I'm assuming you are in the UK. This is taken from NICE's website, and covers the licence for olaparib on the NHS.

1 Recommendations 1.1 Olaparib is recommended within its marketing authorisation as an option for treating adults with relapsed, platinum sensitive ovarian, fallopian tube or peritoneal cancer who have BRCA1 or BRCA2 mutations and whose disease has responded to platinum based chemotherapy only if: they have had 3 or more courses of platinum based chemotherapy and the drug cost of olaparib for people who remain on treatment after 15 months will be met by the company. 1.2 People whose treatment with olaparib is not recommended in this NICE guidance, but was started within the NHS before this guidance was published, should be able to continue treatment until they and their NHS clinician consider it appropriate to stop.

There may other conditions under which olaparib is prescribed, as well as clinical trials, and, of course, there are other PARP inhibitors which are suited to non-BRCA patients.

Best Wishes, A.

Biscuitqueen profile image
Biscuitqueen in reply to

Thank you SO much, this really clears it up. I hope my mum will be able to get another parp inhibitor, I don't think she will qualify for olaparib. God bless x

Emalou71 profile image
Emalou71 in reply to Biscuitqueen

Hiya, I've just finished third line & im not Braca my oncologist felt this was a good option for me as there have been some good results for non Braca on this. Do speak with your oncologist about this as an option, before this I was given Letrozole which gave me 10 months remission.

Xx

Biscuitqueen profile image
Biscuitqueen in reply to Emalou71

Thanks emalou, I'm pretty sure my mum is not brca+ so your reply gives us some hope! I really hope this regime works for you. Do you have it as a pill or intravenously?

Emalou71 profile image
Emalou71 in reply to Biscuitqueen

I have it in pill form, twice a day, it's early days so hoping it's tolerable for the long term 😀

Biscuitqueen profile image
Biscuitqueen in reply to Emalou71

Oh good luck! Fingers crossed you do well on it :)

Cathanne profile image
Cathanne

Hi, I started early in January about 10 weeks after last chemo. On 2x400mg a day now. Minimal side effects, mouth a bit sore. Otherwise fine

Best of luck with it. Cathanne

Emalou71 profile image
Emalou71 in reply to Cathanne

Thank you so much, hoping to start this very soon xx

I started on it about 7 weeks after chemo finished (there was an 8 week window on the trial I'm on). Having now been on the drug for just under 4 years, I have found the side effects very tolerable. Occasional fatigue, heartburn, & difficulty swallowing. The worst side effect is probably insomnia. I do remember that it took a month or so to settle into the drug (I had a lot of dizziness at the start), so when you start on it, you should give it a few weeks to bed in. All the best.

Emalou71 profile image
Emalou71

Thank you so much, I'll take things easy for the first few weeks once started (hate dizziness suffered it on chemo) xx

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