PARP inhibitor

[2mini2]

Hi All

I'm stating to dig deeper into Olaparib treatment as I'm now half way through my second line treatment and have a few questions:-

Has anyone managed to get it on the NHS after second line?

What have your side effects been?

How long has it been working for?

Thanks in advance ladies !

X

[Elizabethe]

Hi,

I'm not on olaparib so can't tell you about side effects etc. A the moment olaparib is approved by the NHS after 3rd line treatment. However there are 2 other PARP inhibitors in the process of being approved (niraparib and rucaparib). I have seen a few articles that suggest they might be prescribed for women after second line. if you are half way through your second line chemo the timing might be just right for you.

Hope this is helpful, wishing you well with your second line treatment - I had carbo caelyx for my recurrence and I found it hard going! but definately worth it in the end.

X

I

[Katmal-UK]

Hi. I am on a trial for Olaparib. I have little side effects, have been on it for 3 years 9 months. Working full time. In order to be able to go on the trial I had to have the BRAC gene and had 2 recurrences. Kathy xx

[2mini2 in reply to Katmal-UK]

Kathy,

Thanks so much, exactly the kind of info I was after.

Great to hear you're doing so well.

How long did you have between your recurrences ?

X

[Katmal-UK in reply to 2mini2]

Hi. After first diagnosis I was on a trial for avastin and had a remission of over 4 years. My second remission ( on a trial for cederanib) was about 18 months. This time round I have been NED for 4 years 1 month. I was NED in the August and started the Olaparib in January 2014 after I finished 3 more cycles of Chemo. I wish you well xx

[Purple-iris in reply to Katmal-UK]

Hi Kathy

Out of interest how long were you on Avastin for ?

Am looking into whether I should try and self fund to continue after NHS stop funding my treatment in January if remain stable .

I know it's expensive but could possible fund for another 6 -12 months or as long as I can tolerate it . Have met someone who is under the same consultant as me who was on it 2 1/2 years before guidelines changed and her CA125 raised. May keep me stable until they make parbs more available . Kim x

[Katmal-UK in reply to Purple-iris]

Hi Kim. i was on it for a year in total. That was the length of the trial. Hope yr doing ok xx

[Purple-iris in reply to Katmal-UK]

Thanks yes all good so far fingers and everything else crossed ! Enjoy the rest of your weekend . Kim x

[Nicky100]

Hi 2mini2,

You currently wont be able to receive Olaparib on the NHS after second line. Although just this week, there has been an announcement into possibly changing this. NICE and the NHS are holding meetings in December to discuss it and we will know more then.

So you would have to self-fund it if you approaching the finish for second line (unless you can get on to some form of trial).

I am currently fundraising for the drug, and the BBC did a documentary about this and Olaparib about 3 months ago. Did you see it? It might be worth you watching as the debate was over just this: ovarian cancer ladies having to self-fund for Olaparib. It may not be on i-player any more but will be on YouTube if you google ' HOSPITAL SERIES 2 EPISODE 2 NICKY OVARIAN CANCER'. Something will pop up.

However, the lady above is right, there are other PARPs in hot pursuit and the NHS is discussing these in December too. There are others, depending on whether you are BRCA + etc.

Kathy above is our inspiration and seems to be doing really well on it! So we all aim to have t if we can and to do as as well as her.

I hope this helps, even if not the news you were looking for. If you have any questions, please let me know and I can try and help!

Love Nicky x

[2mini2 in reply to Nicky100]

Thanks Nicky - I'm going to approach my private health provider to see if they will give it to me (most likely not) but got to be worth a shot right??

I saw your program and pins it very inspirational and also your post a few weeks ago about fitting everything in and what you would have done different really struck a cord with me - I'm 40 and was trying for a baby when I was diagnosed.

X

[Nicky100 in reply to 2mini2]

Oh sorry to hear you are possibly in a similar boat to me? I'm not sure if you had surgery. It is tough being around this age and having the options of a family removed. I found that almost tougher than the cancer.

I presume you are based in the U.K.? there are different options for PARPS in different countries.

X

[2mini2 in reply to Nicky100]

Yes uk.

I just wrote an article for the ovacome quarterly saying exactly that - having motherhood taken away and the menopause has been worse mentally and psychologically than the chemo and the surgery!

X

[2323 in reply to Nicky100]

Hi Nicky 100

I've never commented on this forum before, but have been following for a number of years- especially your posts as I also had the same surgeon as you in London. I was diagnosed in 2014 and am now about to finish third line chemo. I'm trying to find some kind of maintenance drug but as I am not BRCA positive this is proving difficult. I thought that perhaps Niraparib would be available but that now seems unlikely. I know you are aiming for Olaparib after your second line- are you BRCA? Self funding seems to be the only way at the moment but am told that it will not work as well on me . I hope as you say that there will be more to offer us in the near future.

Regards Sue

[Nicky100 in reply to 2323]

Hi Sue. Yes I am BRCA. So it makes things a little different for some of the drugs.

Please don't give up hope though as NICE are discussing it in December so we might have some luck!

My consultant has also just told me that They have just opened up / about to open up an open access programme for Niraparib in France!

In case you have relatives there or could go?

Lots of love and stay hopeful!

Nicky xx

[Bliney]

I was told by my oncologist that I may be suitable for a Parp inhibitors but only if my tumour is homologous recombination deficient and 50% of tumours fall into this category for high grade serous ovarian cancer. If my tumour is not HRD then the Parp inhibitors will not work. I am currently on chemo but am mulling over the possibility of getting my tumour tested and other ladies may find this useful as well.