Parps

[0462County]

I found out yesterday I am BRAC negative. I was diagnosed with Stage 2b High Grade Serous Carcinoma in July, finished chemo last month.

My cancer nurse mentioned that I might need to go on parp inhibitors, she would talk to my oncologist. I have no experience of parps. Do parps slow down/stop the return of cancer? Are you on parps for life? Do their side effects go on indefinitely?

Thank you for your support.

Love and hugs to all xx.

[Lyndy2]

Hello, yes you are right, Parp inhibitors are a maintenance treatment designed to keep the cancer at bay.

Not everyone gets side effects and the length of time you might be on them varies depending on the stage you are at.

However you must start the Parp within 8 weeks of your last chemo infusion date so it sounds like your oncologist has not ordered them for you? The CNS is right to check this urgently xx

[0462County in reply to Lyndy2]

Thank you for your response x.

[Katmal-UK]

Hi I have BRAC2 HGS OC stage 3b and have been on a trial for 9 years for Olaparib. Usually they are prescribed for 2 years . Not everyone gets side effects, these can vary depending on the individual and dosage. Depending on the parp you may be prescribed then it’s worth looking on Facebook where there are groups you can join . Good luck x

[0462County in reply to Katmal-UK]

Thank you for your response x.

[Rosado22]

I think the maintenance drug for those not BRCA positive is Niparib or something like that! I rang Target Ovarian as soon as I knew I wasn’t BRCA. I’m prob starting this next month.

[0462County in reply to Rosado22]

Thank you for your response x.

[Hota]

can you let me know if you go on PARP inhibitors ad I am the same diagnosis as you and my oncologist said they don’t put you on them at my stage . Thanks

[Des1953 in reply to Hota]

hi kota- I was at stage2b high grade serious and my last scan showed Ned , they have also said I do not need parp as it wasn’t that far advanced just three monthly blood tests

[Hota in reply to Des1953]

Thank you for your reply. It’s good to know I’m getting the right treatment. Good news your scan was NED

[0462County in reply to Hota]

Hi Hota

When my cancer nurse mentioned about the possibility of me going on parps, she then realised I was Stage 2b. She did say parps is normally given to those on Stage 3.

I will let you know when I speak to her next week.

Love Beth x

[Hota in reply to 0462County]

Thanks Beth

[Hota in reply to 0462County]

Hi Beth it is nice to find someone with the same stage OC as I have. What treatment have you had so far? Because our cancer is not so prevalent as other cancers it’s very difficult to find others to talk to about it.

[0462County in reply to Hota]

I have had 6 X carboplatin/paclitaxel. I finished the last chemo on 21 November, I had them every 3 weeks. I have a CT scan tomorrow then an appointment with my oncologist on 18 January. What type of treatment have you had? X

[Hota in reply to 0462County]

I’ve had exactly the same treatment as you. I finished my treatment on the 8/12. I have a scan booked for the 10th January and see my Oncologist in February. How are you feeling now your treatment has finished?

[Kouyate]

Hi 0462County, sorry you're having to go through this. I was put on Rucaparib in January this year after finishing Chemo in December 2021 following my first recurrance. I have to be honest it was a bit of a struggle at first, I was put on the maximum dose and it was really just like being on chemo again. My tastes in food and drink changed, I suffered with nausea so had to take antisickness pills and even needed a couple of units of blood as they made me anaemic! But please don't let this put you off. It's taken a while but I pushed on through and i'm still taking them only now my bloods are normal levels and i don't take antisickness pills anymore. My CA125 has sadly started to creep up again although is still only 26 so below the normal levels but I've been told that they will keep me on the Rucaparib for as long as possible as fingers crossed it will do it's job and keep the cancer at bay and slow it right down. I wish you well my lovely x

[0462County in reply to Kouyate]

Hello Kouyate

Thank you for your reply. Sorry to hear you initially had a bad time on parps. Fingers crossed for you that the parps work for you.

Love Beth x

[LesleyGB]

Hi

I started on nirabapib 6 weeks ago and so far the only side effect I have had is constipation - but prunes sort that out! No other side effects so far, and bloods all okay.

Good luck! x

[0462County in reply to LesleyGB]

Thank you for your response x.