NICE olaparib announcement today

[OvacomeSupport]

Hello All

This is to let you know NICE have announced today that olaparib will be available as second line maintenance treatment via the Cancer Drugs Fund, for those with the BRCA mutation.

You can read more on the NICE website here: nice.org.uk/guidance/TA620

You would also need to be platinum sensitive.

Essentially this means there is a greater choice of PARP inhibitors available second-line for those with the BRCA mutation, alongside niraparib and rucaparib, which are both available second-line via the Cancer Drugs Fund regardless of BRCA status.

If you have any questions about this, please do get in touch with us.

Best wishes

Anna

Ovacome Support

[Katmal-UK]

Thanks for the update Anna. Having been on a phase 2 trial for Olaparib for just over 6 years now and in remission for 6 years 4 months I am over the moon with this news. Thank you for sharing. Kathy xx

[Rosiemd in reply to Katmal-UK]

That is great news. I have just finished 6 cycles of chemo for a recurrence of OC after 3 years. I have responded well and going to be starting olaparib in a few weeks. Was wondering if you had many side effects as I am worried about that. However, I did cope well with chemo and didn't suffer too much. Look forward to hearing from you.

[Katmal-UK in reply to Rosiemd]

Hi Hardly any side effects. I continue to work full time. Occasional bouts of dizziness caused by BP dropping, occasional bowel issues but on the whole feel really well. Good luck, hope it works for you! Are you BRAC positive?

[Rosiemd in reply to Katmal-UK]

Yes- surprisingly I am Brac2 as no family history. Thanks for your prompt reply and positive comments. I am also working on ways to build up my immune system too. I am fit and eat a healthy diet so hoping any side effects will be minimal. I do find my oncologist quite negative and he has told me a few times that it will come back. However, looking at the reports on this drug and talking to other professionals they are quite shocked that he is saying this. Hope you had a better experience.

[Katmal-UK in reply to Rosiemd]

Hi From the outset I was told by my surgeon 'the prognosis is not good', by my Consultant 'you have a couple of years', and by my CNS 'it will come back and will shorten your life'.. You can always do what I did, change your Consultant/CNS to someone who says 'who says it will come back' 'who is to say you won't live a long life' etc. So......despite 2 recurrences, diagnosed in October 2007, still here!

My late father had lung cancer at the age of 49..... asked his Consultant how long have I got, to which the Consultant replied, how long do any of us have. The Contsultant died 2 weeks later albeit in a climbing accident. My father died one week short of his 82 birthday. I try not to listen to the negativity! xx

[Rosiemd in reply to Katmal-UK]

Hi Kathy,

Started on olaparib yesterday. Felt very anxious about taking it. Can I ask you are you on the standard doze of 8x2 capsules a day. Did you experience side effects in the first couple of weeks. I find it really hard swallowing all these capsules esp as I rarely have taken medication in my life.

Rosie

[Katmal-UK in reply to Rosiemd]

Hi Rosie. Im on 2 tablets twice a day. No side effects as such, I do suffer dizzyness from time to time, mild nausea and some bowel issues. I hope it goes well for youxx Kathy xx

[Rosiemd in reply to Katmal-UK]

Thanks Kathy for your reply. Hope you don't mind me asking you so many questions. I don't understand why I am on the capsules and not the tablets then. Really hard swallowing 16 a day. It only works out at 800mgs but I read that they were hard to be absorbed and that was why the drug had to be distributed in so many capsules. How many mgs are in your taablets?

Rosie

[Katmal-UK in reply to Rosiemd]

Hi Rosie. Im actually on a trial of the tablets and each tablet is 150mg., so 600mg per day. Have you seen the facebook page 'parp inhibitors' its a great source of information. Kathy xx

[Lyndy]

Fantastic!

[Hidden]

Hi Anna fantastic news for all the BRCA ladies, however if I have been offered Olaparib via a clinical trial and am NON BRCA because they say it is just as effective for me, why is it only going to be for BRCA ladies?

[thomas62 in reply to Hidden]

Hi lyn1987

Who has offered you this trial and where? Are you High Grade? Thanks. Gwen Xx

[Katmal-UK in reply to Hidden]

Hi Lyn I suspect because trials like the one I am currently on (I have BRAC2) have identified that it works better with the BRAC gene. Having said that they are obviously trialling for non-BRAC and hopefully once they have the results of those trials it will be available for both. I do hope so!

[Hidden in reply to Katmal-UK]

Hi Kathy - Thank you, I hope that the trials reveal that it works for NON BRCA status equally as well. fingers crossed anyway. xx

[Katmal-UK in reply to Hidden]

I hope so too Lynn, I really do!

[OvacomeSupport Partner My Ovacome Team in reply to Hidden]

Hello lyn1987

You’re right that olaparib is effective for those without the BRCA mutation.

Unfortunately NICE explain on their website here that it is only cost effective for them to recommend it for those with the BRCA mutation: nice.org.uk/guidance/ta620/...

They say: “Clinical trials show that olaparib extends the time until the cancer progresses compared with routine surveillance, regardless of whether the person has a BRCA mutation. But the company has offered a commercial arrangement that applies to olaparib tablets when used for people with a BRCA mutation who have had 2 or more courses of platinum-based chemotherapy. This means that olaparib is cost effective only when used for the subgroup of people with a BRCA mutation.”

We certainly hope that further trials/different arrangements with the drug company will expand access to olaparib.

Until that happens, niraparib and rucaparib are available second-line regardless of BRCA status, or olaparib may be available through trials, as you have.

If you need any further information please let us know.

Best wishes

Anna

[Hidden in reply to OvacomeSupport]

Thank you Anna - it breaks my heart that these decisions are monetary based, but that I suppose is the world we live in. I intend to write to NICE, I doubt it will do much good but I will have my rant.

[OvacomeSupport Partner My Ovacome Team in reply to Hidden]

Thank you lyn1987. When the results from trials for non-BRCA start coming through NICE will look again at the evidence and we will put our submission forward arguing for availability. We always post asking for people’s experiences to include in the submissions so if you are agreeable to sharing your experience then too, that would be really helpful.

Best wishes

Anna

[Katmal-UK in reply to OvacomeSupport]

Anna - - one thing that struck me when the cost (which I already knew was as much as it is ) but what was mentioned is that it's 'excluding VAT' -Is VAT really charged on a Cancer drug ???

[OvacomeSupport Partner My Ovacome Team in reply to Katmal-UK]

Hello Katmal-UK

Yes, hospitals pay VAT on prescriptions dispensed from their pharmacies.

It's quite an inconsistent system: hospitals and over the counter medicines incur a VAT charge, while prescriptions from GPs and other health professionals (eg physiotherapist) don't have VAT charged.

That's why sometimes hospital doctors will suggest someone asks their GP to prescribe certain medications.

Do let me know if you want any further information.

Best wishes

Anna

[Katmal-UK in reply to OvacomeSupport]

Thanks Anna

[Hidden in reply to OvacomeSupport]

Will be happy to share experiences.

[transf2856 in reply to OvacomeSupport]

Hi If is all down to cost can we pay for it ourselves ? x

[Hidden in reply to transf2856]

I dont know if it is possible to buy privately but I recently read that it costs £4.200 per month excluding VAT.

[WoodyB in reply to Hidden]

My wife Suzanne has been on olaparib since Oct 2017 following chemo for her 2nd recurrence. She is BRCA2. We were told that AstraZeneca will continue to provide it free of charge once the NHS have funded the first 15 months. So far so good. We are obviously very grateful to both the NHS and AstraZeneca.

[OvacomeSupport Partner My Ovacome Team in reply to transf2856]

Hello transf2856

It may be possible to pay privately, but you would need a private prescription for olaparib from an oncologist.

Macmillan has information on their website on what to do if a drug isn't funded by the NHS here: macmillan.org.uk/informatio...

I hope this is useful.

Best wishes

Anna

[transf2856]

Wouldn't it be lovely if this was also for us BRCA negative ladies. But hope it helps all the BRCA positive ladies. xx

[Katmal-UK in reply to transf2856]

Hopefully once they get the results from non BRAC trials, assuming they will be positive, then it will. My understanding is that they only started trialling non-BRAC in the last couple of years (not sure of the length of time but I recall having been on the trial and being told they were starting to trial for non-BRAC and seeing good results and I have been on my trial just over 6 years now so it take a while for results to show. xx

[transf2856]

I hope so and thanks for the info. xxx

[delia2]

I am in the US but have recently read trial results that show a strong result for HRD positive women that is closer to the results for BRCA positive ones. I don’t know if people are getting tested for that in the UK.

[Katmal-UK in reply to delia2]

Another lady asked me if I was - I keep meaning to check my gene test results - you just reminded me!

[Artgreen]

This is very good to hear for BRCA +ve ladies. Thank you.

I understand that Trametinib is also being considered for low grade women regardless of genetic mutations but there doesnt seem to be any updates as to how far it has got through the NICE process. Is there any more news on this that you are aware of?

Many thanks

Alex

[OvacomeSupport Partner My Ovacome Team in reply to Artgreen]

Hi Alex

Unfortunately trametinib isn't going through the NICE process at the moment. It's not licensed for use in ovarian cancer yet, although the LOGS trial had very positive results.

There are ongoing discussions with the drug company to try and move this forward and we'll post updates on the forum when we have them.

Best wishes

Anna

[Artgreen]

Thank you so much Anna

Best wishes

Alex