Rucaparib - your experiences needed: Hello All... - My Ovacome

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Rucaparib - your experiences needed

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OvacomeSupportPartnerMy Ovacome Team
8 Replies

Hello All

We are currently preparing two submissions to NICE for their reviews of rucaparib (Rubraca) and we would really like to hear from you if you have experience of this treatment. We will not use your name or any identifying details.

The reviews are for:

Rucaparib for maintenance treatment of relapsed platinum-sensitive ovarian, fallopian tube or peritoneal cancer

and

Rucaparib for maintenance treatment of advanced ovarian, fallopian tube and peritoneal cancer after response to first-line platinum-based chemotherapy

Sharing your experiences is a huge help for us in this process. Including your comments always strengthens our submissions and makes them much more impactful.

If you would like to share your experience of rucaparib for us to include, please leave a comment below, or send a private message through the chat function of the forum or by emailing at support@ovacome.org.uk.

Thank you very much for all your help as always.

Best wishes,

Anna

Ovacome Support

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purfekt10 profile image
purfekt10

I am currently on Rubraca and would love to relate my experiences with this drug.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply topurfekt10

Good afternoon purfekt10

Many thanks for your comment. It's great to hear that you are interested in sharing your experiences of Rucaparib for this upcoming NICE submission. Is there anything particular you would like us to share or like us to mention on your behalf? Please do send us a direct message here on the forum or drop us an email via support@ovacome.org.uk . If you would like more information about the submission or this process, please don't hesitate to let us know.

Best wishes

Annie - Ovacome Support

purfekt10 profile image
purfekt10 in reply toOvacomeSupport

I began Rubraca this past June after completing chemo. I began with 1200 mg/day. Unfortunately, it decimated my hemoglobin and platelets and had to have a transfusion. I stopped Rubraca for two months and restarted the medication in late August, but the same thing happened even at the lowered dose of 800 mg/day. My platelets decreased to 26,000, so I stopped it for another two months. I am currently taking 500 mg/day and my platelets have dropped to 109,000 and I expect that I will, again, have to stop taking Rubraca. If my platelets drop below 75,000, I will no longer be able to take the drug.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply topurfekt10

Hi purfekt10

Thank you for your reply and for sharing so openly about your experiences with rucaparib. This is a really valuable perspective to hear. I'm very sorry to hear that this treatment has reduced your haemoglobin and platelets so significantly.

Please know that the Ovacome support team are here for you if you would ever like to talk things through. You can call us on (+44) 800 008 7054, Monday - Friday, 10am - 5pm (U.K time) or schedule a 1-to-1 chat via video call here on our website: ovacome.org.uk/forms/1-to-1... . I hope that your blood results stabilise soon and that you are feeling as well as possible.

Many thanks again and best wishes

Annie - Ovacome Support

SKpaints1 profile image
SKpaints1

Yes i would like to help, i was given rucaparib after first recurrence, was on it fir a year, now having chemo for 2nd recurrence

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply toSKpaints1

Hello SKpaints1

Thank you very much for offering to share your experience of rucaparib. You can direct message us through the forum or email support@ovacome.org.uk with further details if you prefer?

If you'd like to have a chat at all, do call me on 07586 247 310 whenever is convenient for you.

Best wishes

Anna

Caleda4 profile image
Caleda4

Hi, I had Rucaparib,following carbo/gem for first recurrence in 2020,and was on this for just under 18 months when it stopped working. This was for hgs. Fallopian tube/Ovarian. Originally diagnosed 2015 with endometrial, but path lab then informed hgs. I started rucaparib on 600mg twice a day, side effects made me feel really unwell and I could not eat. So I was advised to come off of them for a week,and then restarted on a low dose, and built up quite quickly to 500mg twice a day which was OK. I never suffered side effects at this level. I am non brca, so made an assumption that this is why it only worked for a short period of time.

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team in reply toCaleda4

Dear Caleda4

Thank you very much for taking the time to share your experiences with rucaparib. We really appreciate it.

Best wishes

Anna

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