Question about Olaparib after frontline chemo

[sticky3006]

Dear Ladies,

I know there's been a lot of discussion on here about Olaparib which I think is currently licensed to be given as maintenance after second recurrence. I'm pretty sure, and it has previously been mentioned that last December a report was published stating that it was better to give Olaparib after frontline chemo finished (within four months) but NICE have yet to agree with this. My question is do you think those of us who have recently finished chemo (mine ended September 2018) should be hounding our oncologists to see about starting Olaparib as maintenance or do we sit tight until NICE decide whether they will fund it after frontline chemo? I don't want to think I may be missing a drug which effectively may make a big difference in my cancer journey and even stop it from recurring. The trial results seem very positive from what I've read.

What are your thoughts?

thanks,

Sticky77

[Hidden]

My understanding is that you have to be BRCA positive to qualify and start Olaparib within 8 weeks of having your last Chemo. I had my BRCA blood test done on the 14th Jan, and the doctor has rung me today to say that they now dont think they will get the results back in the qualifying time frame as I finished my last chemo on the 28th November. So just on "Watch and wait" unless my CA125 rises or I develop any suspicious symptoms. It is hard not being on treatment but it was my decision to not start Avastin so am going to try and get on with my life as if it is all over and done with! Fingers crossed it is! Good luck to you.

[sticky3006 in reply to Hidden]

Thank you lyn1987. I've left a message with CNS to get her views. I am BRCA2 positive but think I may have missed to boat as now 4 1/2 months post chemo. I did ask my Oncologist last time I went for my appt. but her response was a bit long winded! I'm wondering now whether I should be more assertive and badger people more based on the information I've seen. Good luck to you too. x

[Katmal-UK]

Hi Sticky I'd badger for Olaparib, then again I speak from experience having been on current SOLO2 trial for 5 years 1month and so far, touch wood, its working. I am a firm believer in this drug.

Kathy xx

[sticky3006 in reply to Katmal-UK]

thank you Katmal. I'm waiting to hear from my Oncologist. I've got a funny feeling she'll say wait for a recurrence and then go straight on it. Obviously I'd rather stop a recurrence from happening than wait and see. Its a tough one though because I suppose I may not reoccur for a while (maybe I'm dreaming!) but the research does seem to suggest sooner rather than later for Olaparib. Good luck with your Olaparib and keep up the good work!

Sticky77 x

[Lindaura]

Dear Sticky,

I believe we are stuck waiting for NICE to fund this.

I am BRCA1 positive, but because of the slowness if the Bristol Genetics lab, was not tested in time for any plans or trials.

Because of being BRCA1 positive, I had a great response to Carbo/Taxol and thought I just might escape recurrence, but 6 months later, with no symptoms, my CA-125 began to rise.

I am now in my 4th infusion of Carbo/Caelyx and my CA-125 is down to under 30 and my CT scan shows no sign of disease anywhere in or on organs, lymph nodes or skeleton, just a shrinking nodule on my pertineum.

I can now get Niraparib/Zejula after this treatment, but Olaparib is not funded until after second recurrence- something I do not want to have.

I have wheedled, and begged and pleaded, to get onto Olaparib, but Olaparib is not available for us yet.

Any PARP Inhibitor is as effective and should be available for all of us immediately after first line, and probably will be, just not yet.

Olaparib is only preferable because it has less extreme side effects.

But anecdotally, Niraparib is a good choice once they get the dosage right.

So I will settle for it and hope and Lobby for newly diagnosed ladies to be BRCA tested right away and for Olaparib to be the maintenance drug of choice after First Line.

Best wishes,

And hugs,

Laura

[sticky3006 in reply to Lindaura]

Thank you Lindaura. Have you read about the Icon9 trial which either gives Olaparib alone or Olaparib and Cediranib (I think) after first recurrence? Would that be suitable for you and give you access to Olaparib earlier? x

[Lindaura]

Thanks for that,

I have asked my Oncologist about a trial still on in Oxford with just Olaparib, but she had not followed up on it. I am going to badger her at my next consult after I check what is still on close to Bath.

I don’t want a double blind, so I will only take a trial for Olaparib.

But I value your input.

Thanks so much.

Hugs,

Laura

[sticky3006]

Me again! Icon9 is Oxford, Portsmouth, London, M/cr, Edinburgh, Brighton. Is a double blind trial where one group is a placebo? Icon 9 trial has both groups getting Olaparib but with Cediranib added Olaparib in one group x