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
Written by
OvacomeSupport
Partner
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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.
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.
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.
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.
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.
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.
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!
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.
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.
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