Olaparib submission to NICE

[OvacomeSupport]

Hello

I know that we have previously requested your comments about olaparib and some of you have very helpfully shared your experiences. We are preparing a submission to NICE regarding olaparib becoming routinely available for second-line treatment on the NHS.

The name of the NICE consultation is: Olaparib for maintenance treatment of recurrent, platinum-sensitive ovarian, fallopian tube and peritoneal cancer that has responded to platinum-based chemotherapy.

It would be really helpful if any of you who are taking or have taken olaparib have comments you'd be willing for us to share within our submission - we wouldn't use your name or any identifying details.

Do get in touch if you have any questions.

Many thanks for your help, as always.

Best wishes

Julia (Ovacome Support Services Officer)

[Katmal-UK]

I was on a trial for Olaparib after a second recurrence and now that the trial has finished I remain on Olaparib to enable data to continue to be collected and also because I continue to benefit. I have a CA125 of below 3 and a really good quality of life which enables me to remain productive, working full time etc and living life to the full.

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

Hello Katmal-UK

Thank you very much for sharing your experience.

Best wishes

Julia

[Colman]

I'm on olaperib been on it for 10 months on a trial my ca125 is 114 and has stayed the same for the last 3 months. I tolerate it quite well.

Claire

[WoodyB]

Suzanne has been taking olaparib for 3 years and is lucky enough to live a "normal" life apart from waking early in the morning and getting tired early in the evening - of course, this might be nothing to do with the drug.

She had fairly mild side effects in the first 3 months, mostly nausea and fatigue, but NOTHING like chemo side effects.

Suzanne also suffers from cold hands and numb feet, ie peripheral neuropathy, but this may be a long term side effect of her past chemotherapy.

PARP inhibitors seem to be a game changer for many and I would say at least try them if you are fortunate enough to qualify.

Suzanne is BRCA2 positive and her CA125 has been stable in high single figures for the past 2 years. This is the longest she has ever gone without a recurrence.

[Rhonddalady]

Hi, I was diagnosed in Feb 2020 with stage 4 Primary Peritoneal Cancer. Started chemo ( taxel/ carboplatin) in April, results positive CA125 reduced from 1500 to 28 after 3rd cycle. Debulking operation after 4th cycle no complications and remaining 2 chemos followed. Officially in remission!!

I'm BRCA1 and this is my 3rd week on Olaparib. So far no side effects,apart from mild nausea occasionally- which is manageable.

1st blood test due week Monday to see how my body is responding to Olaparib.

I feel extremely lucky that all treatments have gone well so far and positive about Olaparib.

Jan x

[MH500]

I’ve just had success with 2nd line chemo for first recurrence, been on Olaparib for 7 weeks so far

[Rosiemd]

Been on olaparib for 8 months with hardly any side effects. This was prescribed after second recurrence. My CA125 has been at 6 for a while and latest scan clear. I am so thankful that I can lead a normal life.