Olaparib.: Hi, I wonder if some of you lovely... - My Ovacome

My Ovacome

15,173 members17,785 posts

Olaparib.

Frenchhouse3 profile image

Hi, I wonder if some of you lovely ladies could help me out with this question?

I’m currently on Olaparib and coming near to finishing my two years on it. ( I’m BRCA negative but my tumour was BRCA 2 positive).

A friend of mine who is negative for both bloodline and tumour was told she would now be offered Parps after second line. She was expecting it to be Olaparib but it’s actually a different one.

Is anyone here on Olaparib who is negative for both?

Thanks

Denise.

26 Replies

I think the protocol in UK is Olaparib after recurrence only for BRCA positive….unless anyone knows better? My oncologist was busy ordering Rucaparib for me after my relapse and at the end of the form he casually said ‘ you aren’t BRCA positive are you?’ When I said yes, he had to tear up that form and start again with the one for Olaparib!

Frenchhouse3 profile image
Frenchhouse3 in reply to Lyndy

Thank you so much for your quick response Lyndy, I’ll let my friend know. I hope the Olaparib is going well for you? Xxxxx

testarossa71 profile image
testarossa71 in reply to Lyndy

No, I'm on Olaparib as my maintenance treatment (alongside Avastin) after my first full round of chemo. I'm neg for both bloodline and tumour.

I hope you stay ned forever after finishing your two years!

Frenchhouse3 profile image
Frenchhouse3 in reply to delia2

Aw thank you so much, I pray that I will be lucky. I hope you will too. Xxxxxx

Hi Denise,

I believe Niraparib (Zejula) was the first PARP approved for women with ovarian cancer irrespective of BRCA status. In the phase 3 PRIMA Trial newly diagnosed women with response to platinum therapy were given Niraparib and it outperformed the placebo in respect to progression free survival.

Niraparib was the last drug my mum tried and she was BRCA neg (both blood and tumour) and this was given to her after four lines of chemo.

I'm not sure what the drugs status is in the UK however i believe it has received TGA approval (Australian Approval). I assume its also been approved in the UK.

Here is a link for further information:

onclive.com/view/dr-brown-o...

organicinna profile image
organicinna in reply to RomanZ

Yes same in the UK

Hi RomanZ, thank you very much for all this information, it does help clarify things. I’ll let my friend know. She is worried that the Niraparib might not be as good, but this sounds very promising! I’ll also check out the link.

Having just read your bio, I was so very sorry to read your mum had passed away. She sounded such a wonderful lady and I hope all your lovely memories of her help sustain you.

Denise xxxxx

RomanZ profile image
RomanZ in reply to Frenchhouse3

Thanks Denise. She was an amazing mother. She'll always be with me :-)

HiYes am negative on both but only started Niraparib first line......They gave me a week holiday from it to settle side effects....

Hi there, thank you for responding. I think my friend will be offered Niraparib too. Wishing all the best with your treatment.Denise xxxxx

Hello, the only other PARP medication I can think of is Avastin.I was diagnosed in May 2020. After a combination of surgery and chemo I was given Niraparib for which I was extremely grateful. However I have just discovered the cancer has returned despite being on Niraparib (I’m BRCA negative) for almost a year. Consultant recently informed me the average for reoccurance whilst on Niraparib is 9 months, so I got an extra 2.5 months. Not the wonder drug I was led to believe it was and everyone was so excited about it being approved by NICE !!!

If you discover the name of the PARP your friend will be given I would be grateful if you could let me know, although I don’t think I’ll be offered any other maintenance drugs even though this is my first relapse.

Very best of luck with your treatment and that of your friends xxx

Frenchhouse3 profile image
Frenchhouse3 in reply to Flute_7

Hi there, thank you for responding. Ithink my friend is going to be offered Niraparib. She previously had Avastin also.Wishing you all the very best with your treatment too.

Denise xxxxx

K95m profile image
K95m in reply to Flute_7

Sorry to hear about your experience on Niraparib. I was diagnosed 3 C High grade OC in 2016, recurred in 2017. I have been on Niraparib for 3 years and 5 months now and remain NED. It’s not an easy drug to take for sure but thankfully is working for me for now. I will stay on it as long as it works.

Best wishes

Kay

nettiebobs profile image
nettiebobs in reply to K95m

When you say it’s not an easy drug to take could you explain more thanks. My sister has just recently started it and experiencing awful excruciating pains. She is currently in hospital awaiting a CT scan. It seems to be the drug I see more written about.

K95m profile image
K95m in reply to nettiebobs

Hello

Yes I mean the side effects for me were awful, high blood pressure, massive liver dysfunction, nausea, insomnia , sun sensitivity , muscle aches and fatigue. A 2 week break from it and a reduction of dose to 200mg helped. Blood pressure and liver function have settled down, insomnia and fatigue remain. I manage both by resting when I need too. I swim and spa a couple of times a week and I have a home massager which I use daily which really helps. I manage the nausea with cyclizine once a day.

The great news is I’m NED since April 2018. For me it was well worth persevering with the drug . I wish your sister the best.

Kay

nettiebobs profile image
nettiebobs in reply to K95m

Thank you, and that is wonderful that you are NED. So much information that they don’t explain. This forum and the people willing to help others is amazing. ❤️

I am on a clinical trial in the US with olaparib (Lynparza) & cediranib. I am not BRCA positive. I would not tolerate cediranib due to high blood pressure issues that I'm still being treated for. I've only been on the trial for 1 month. It has taken my body time to get used to the olaparib (nausea, fatique, etc). First diagnosed in 2017, 6 rounds chemo in 2018, recurrence Feb 2021, exploratory surgery (biopsies taken), 6 more rounds of chemo, & now the clinical trial.

Hi there, thank you for responding, maybe the US is ahead of the UK with trialling Olaparib with BRCA negative patients?Wishing you well with the treatment.

Denise xxxxx

I'm BRCA1/2 negative. I am HRD+ though, and that means I was offered Olaparib, alongside 3-weekly infusions of Avastin (Bevacizumab) as my maintenance treatment after I completed chemo. This is a relatively recent offering as I understand it.

Thank you for responding Testarossa21, I’ll pass this to my friend. I’m not sure if either of us was tested for HRD, so we’ll have to enquire.Wishing you all the very best with your treatment.

Denise xxxxx

HRD testing is quite new in the UK. According to my consultant, I was one of the first in the country to have my tumour tested for HRD (in the US, although I think they do this in the UK now). It requires quite a lot of tissue to run a test and it will depend on whether enough of your tissue has been retained for them to be able to get a reliable result. The landscape of testing and treatment is very fast-moving for ovarian and gynae cancers at the moment so if you do Google any of this -make sure it's from a reliable source and that the article is not more than 18 months to 2 years (max) old so that you're not looking at out of date info. Wishing you and your friend the best possible treatment and the best possible outcomes. A xx

Hi there, many thanks for this info, I’ll ask my consultant if my tumour was tested for this too. My friend will want to find this out also, I’m sure.Thank you for your good wishes and all the best to you too.

Denise xxxxx

I was given niraparib and I am BRCA negative. Just have a few breaks from it once in awhile, because it can affect your blood counts. Donna U.S.

Hi Donna, I too had to have several breaks from Olaparib because of my HB dropping. I think my friend will be on Niraparib too.

All the best to you

Denise xxxxx

Hi Denise, thankyou for your best wishes and all the best to you too. xxx

You may also like...