Rucaparib submission to NICE: Hello All We are... - My Ovacome

My Ovacome
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Rucaparib submission to NICE

OvacomeSupport
OvacomeSupportAdministrator

Hello All

We are preparing a submission to NICE regarding Rucaparib becoming available on the NHS.

The name of the NICE consultation is: Rucaparib for maintenance treatment of recurrent platinum-sensitive epithelial 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 Rucaparib or who took part in the ARIEL 3 trial 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.

Anna

Ovacome Support Service Manager

14 Replies
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Just curiously are all parp inhibitors related to Ovarian Cancer for people who are platinum sensitive?

OvacomeSupport
OvacomeSupportAdministrator
in reply to CallmeMum

Hello CallmeMum

Yes, currently PARP availability through NICE is for women with platinum-sensitive disease.

Best wishes

Anna

I've been on Rucaparib since November 27th. I am BRACA negative, BRIP positive and platinum sensitive. I get it on some sort of access programme, and so far it has been good. My CA125 was 10 on Monday.

OvacomeSupport
OvacomeSupportAdministrator
in reply to Rachael47

Thank you Rachael47. That's really good to hear.

Would you mind letting me know if you've found the side effects manageable? Does it allow you a good quality of life? This is the sort of detail that will help strengthen our submission, but please don't share anything if you would rather not. You can also private message me if you prefer.

Best wishes

Anna

The worst side effect for me has been insomnia. Some nights I get three hours sleep, and that has a bad effect on my quality of life as I am exhausted a lot of the time. However, last night I got 6 hours sleep, and the night before 4, so it may be it is wearing off. So far I am coping well and have no desire to stop taking it.

OvacomeSupport
OvacomeSupportAdministrator
in reply to Rachael47

Dear Rachael47

Thank you very much, that is really helpful to know.

Best wishes

Anna

Hi Anna

I started Rucaparib on the extended access programme in May 2018. Although it has worked well for me in shrinking both my tumours, unfortunately it opened up my Blood Brain Barrier, so resulting in 9 metastasis to brain. Have received radiotherapy, will await another MRI shortly to see how things are looking. I think anyone receiving a parp (apparently especially if Brca1/2?) should also have regular access to MRI scans. Hope this helps.

Michelle

OvacomeSupport
OvacomeSupportAdministrator
in reply to Bubbles-1

Dear Michelle

Thank you very much for your helpful comment. I hope the radiotherapy has been effective. If there is any support you need, please do get in touch with us.

Best wishes

Anna

OvacomeSupport
OvacomeSupportAdministrator
in reply to Bubbles-1

Dear Michelle

I also checked with a member of our Medical Advisory Board who is a Consultant Medical Oncologist for Gynaecological Oncology and Early Phase Trials, and she confirmed there is no link between PARPs and brain mets.

She explained that of the PARPs, niraparib is able to penetrate the blood brain barrier better than the other PARP inhibitors so is useful for treating brain mets. It has no effect directly on the blood brain barrier and does not open it up.

I hope this information is helpful for you, please do get in touch with me if there's anything we can help with.

Best wishes

Anna

Well, this information has come from my Medical Oncologist and Clinical Oncologist, so tend to disagree. Another lady who has access to Rucaparib had just found brain mets too. Something let it through, maybe I'm just really unlucky!

Michelle

OvacomeSupport
OvacomeSupportAdministrator
in reply to Bubbles-1

Thanks Michelle. Your team will always give you specific information to you so I'm really sorry if I've caused confusion. I wanted to let you know the general information about Niraparib in case it was mentioned for you at a later date.

Best wishes

Anna

Hi just noticed post I have been on Rucaparib for 8 months after 5 years of recurring disease and chemo each year. I am happy with results of Rucaparib and hope I will stay on this for longer it is doing the job so far so good and keeping me off chemo fingers crossed.

OvacomeSupport
OvacomeSupportAdministrator
in reply to Helen25

Dear Helen

Thank you very much for sharing your experience.

Best wishes

Anna

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