PARP inhibitors on NHS

[Emsymits]

Ok ladies as part of my latest fact finding mission I need clarification about PARP inhibitors. I can’t seem to find out what’s available as standard on the NHS from your own Oncologist . (I’m not talking about trials as they’re different )

I’m BRCA1 so know that I’d benefit (I hope!) or be eligible but what’s available when?

Is this correct? -

After first OC I believe now Olaparib is offered (sadly I’m ‘too long’ post chemo to qualify 🙄) Is it available for 2 years only?

After first occurrence- Rucaparib? Or is it Niraparib? Is so, for how long?

After second recurrence-Olaparib? Again for how long?

So is the above right and how long do they give it to you for? I saw something about 2 years only?

Also if they give you one PARP will they give you another different one if it fails to work or you relapse?

Sorry but I m trying to plan for the future if that’s possible 🙏🏻 and hate not knowing what my potential options are! What have you ladies been told or given?

I’d be grateful for any info!

Em x

[delia2]

Hi. I’m in the US but can give one clarification: the two year limit on Olaparib is only after frontline, not after recurrence and I believe the NHS does not allow PARP after PARP but there are trials for this and things could change down the road. I believe you can look up the NICE guidelines or ask Ovacom. Since you are BRCA positive they might put you on Olaparib after first recurrence.

[Emsymits in reply to delia2]

Ah that’s interesting to know about the frontline 2 year thing. I did wonder! Thank you.

[Dales-Rambler]

Hi Em

I'm BRCA1 with my 1st recurrence happening after 4years. I was initially offered Niraparib as that seemed to be what Leeds preferred. I perservered for 3 months but it didn't suit me, so my oncologist was happy to offer me Rucaparib, which I've been taking since December 2021. I think it's available for as long as I remain disease free.

[Emsymits in reply to Dales-Rambler]

Oh that’s great that they put you on a different one. Fingers crossed it continues to do it’s stuff!

[Guilane]

I’m sorry you missed the Olaparib. I badgered my Onc and just got it in time to begin it and Avastin after my chemo. I wasn’t eligible for surgery so am not disease free. I can continue as long as my tumour doesn’t grow or spread further or I reach the two year cut off. Good luck, keep researching, sometimes we hit on things our Oncs might not offer us. X

[SopSinger]

Don't stress about it. I was diagnosed and treated before PARPs existed but I'm still here, 16 years later with no recurrence.

[Emsymits in reply to SopSinger]

I’m hoping never to need them but I’m someone who likes to know info in advance! Always have a Plan B!!!

[anjr1 in reply to SopSinger]

That's fantastic, congratulations! May I ask at what stage you were in your first initial diagnosis and if they did surgery or chemo 1st? Thank you!

[SopSinger in reply to anjr1]

Staging not done until after surgery, turned out as stage Ic. Surgery first, despite suspicion of tumour on my liver. Then chemo (carboplatin only), completed in November 2006. No recurrence, discharged after 5 years, followed up by my GP if (when) necessary.

[Lyndy]

I got Olaparib after my first recurrence…because I’m BRCA 1 + . My oncologist was writing out a prescription for Rucaparib when he turned to ask if I was BRCA + when I said yes, he ripped up the prescription and started again for Olaparib. I have been told I will continue on it until it stops working.

[OvacomeSupport Partner My Ovacome Team]

Hello Em,

Thank you very much for your message. I can see that you have already had a number of very helpful comments from members of the forum community about PARP inhibitors.

I was wondering if you had come across our booklet on targeted therapies. This looks at PARP inhibitors in more detail and explains when they may be prescribed. I will put a link to this information here: ovacome.org.uk/targeted-the... Please let me know if you would like me to send you a paper copy.

It is important to note that information about targeted therapies frequently change so we would encourage you to speak with your clinical team and you can always contact us at Ovacome for up to date information and help in planning these discussions.

I’m aware that I have not answered all your questions, but once you have had a chance to read the targeted therapies booklet, if you would like further information or to talk anything through, please don’t hesitate to give us a call. You can contact the support service team by calling 0800 008 7054 or by emailing [e-mail].

Best wishes,

Cathryn

Ovacome Support

[Emsymits]

Many thanks. The booklet looks good. I know what each of the PARPs are it’s just making sense of what is available when ( ie eligibility) that I’ve been having difficulty finding out! Is there a list somewhere of what leaflets etc you do?

[OvacomeSupport Partner My Ovacome Team in reply to Emsymits]

Hi there Em

I’m pleased to hear that the targeted therapies information looks like it may be helpful.

Absolutely, you can find an order form for all Ovacome information resources here: ovacome.org.uk/forms/ovacom... . These can be sent to you in the post, free of charge. If you would prefer to access digital copies of our information booklets, please select the ‘information and support’ tab on our website. Our information resources are divided into four categories of: ovarian cancer symptoms, about ovarian cancer, living with ovarian cancer and if your care needs increase. I hope you will find these useful.

As my colleague Cathryn mentioned yesterday, the availability and eligibility criteria for PARP inhibitors is dependent on several factors and does change frequently. It may be helpful to discuss this with your clinical team, near the time of potential treatment, as they will be able to advise you considering your individual circumstances and medical history. We would also be very happy to talk through this on our support line on 0800 008 7054, or by arranging a video call if that may work better for you. For more details, please visit: ovacome.org.uk/forms/1-to-1...

Please don’t hesitate to get in touch if there’s any additional information we can provide or anything we may be able to help with.

Best wishes

Annie – Ovacome support