Starting Rubraca tomorrow

[win_56]

Hi all

Well finally starting Rubraca tomorrow to keep my cancer stable. To say I'm anxious is an understatement but haven't got much choice. Starting on the high doseage of 1200mg daily. Can anyone please share their experience of this parb and what doseage you are on and how long you have been taking it. Thank you.

[Caleda4]

Hi,

I hope all goes well for you when you start this parp. Please let us know how you get on with this, the side effects etc.

I am supposed to be starting this in two weeks following a telephone Consultation on the 19 November which will discuss the outcome of both the chemo and the CT scan, the latter I had last Friday.

I am also concerned about taking this parp, but will have to see how it goes and whether it will be effective for me. The booklet I was sent from the hospital states that the dosage will be 1200 mg per day,which is recommended as the starting dose,but can be reduced if necessary to help minimise side effects.

Take care,

Caleda.x

[win_56 in reply to Caleda4]

Hi Caleda. Good luck with your scan results. I'll keep you posted on how it goes.

[Caleda4 in reply to win_56]

Thank you.x

[Newbie_2020 in reply to Caleda4]

Good Luck with the photo consultation of today. I hope all goes well. My understanding was that all PARPs work in the same way and each have their own side effects. Some have lesser side effects, to a certain extent, with Rucaparib as the one better tolerated.

[Lyndy]

From me as well... best of luck and do keep us posted. My oncologist wants me to have Rucaparib but I haven’t finished chemo yet. He says he uses it because it has the least side effects xx

[win_56 in reply to Lyndy]

Hi Lyndy that's what my oncologist said too. Will post again after two weeks.c

[Katmal-UK]

No experience of this parp but wanted to send my best wishes xx Kathy xx

[win_56 in reply to Katmal-UK]

Thanks Cathy. X

[Gemmyw]

Wishing you all the luck in the World, Win. I didn't make it to the PARPs in the end, but will be cheering you on from the sidelines x

[win_56 in reply to Gemmyw]

Hi Gem I just read your last post. I'm gutted for you that you didn't make it to the parbs keep me posted on your next step of treatment. Thinking of you ❤️ x

[Gemimablackvelvet]

Hi win, I was on Rucaparib from March to August this year with few side effects that I can remember. Unfortunately it didn’t really work for me. Although my cancer didn’t Increase dramatically it had spread a little to my liver so the oncologist started me back on chemo because a scan showed progression. I have never had NED and still have 3/4 tumours. Hoping this Taxol will zap a few modules.

Good luck with your treatment. It does work for an awful lot of ladies

Love from Angela xx

[win_56]

Hi Angela, I have just been looking at your posts. Did you ever get that second opinion from London? I really do thnk that that the taxol works better than the caelyx - well it did for me - and you will get a good response...but I would defo go for that 2nd opinion. xx

[Gemimablackvelvet in reply to win_56]

Good morning win! No I didn’t go to London for a second opinion but I’ve looked into Manchester as either you or one of the other ladies gave me the name of a top OC surgeon there. I live in Derbyshire so Manchester would be more convenient. I did ask my oncologist, who didn’t seem to mind but I’m not sure if he has great faith (maybe the wrong word) He intimated that we only hear about the success stories but who knows! It could be some of us. 🙏 I’m certainly not going to rule it out.

Love from Angela xx

[win_56]

Hi Angela, yes I know who you mean at the Christie's. This is one of the top cancer centres for OC as well as the Royal Marsden in London and you are doing the right thing getting a second opinion - nothing to loose. I'm thinking of you Angela. Keep in touch and let us know how your treatment is going. I'm sure the taxol will hit these tumors hard. Wishing you all the best. You will be in my prayers. X

[Helen25]

Hi I have been on Rubraca for a year and a half. I am on 600mg a day. Was on highest amount to begin with and was not well. They reduced and still felt the same although it was working so decided to go for lowest dose and have been great. No side effects and keeping my CA125 low. If you can managed try and stick with higher dosage but don't worry if you are ill as can be reduced and I have enjoyed a life without Chemo which has been great. Good luck to everyone who tries it.

[win_56 in reply to Helen25]

Helen can I ask if you are brca positive and was you NED before starting?

[Helen25 in reply to win_56]

Hi I am not Braca positive and had just finished 6 months of chemo but was not ned but low Ca 125. I hope you manage this but be aware you can reduce dosage but stay with it, it's worth it, good luck.

[Newbie_2020 in reply to Helen25]

Can I please ask how low was the CA125?

[win_56 in reply to Newbie_2020]

My CA125 at recurrence was only 3.4 and now 2 2.

[Newbie_2020 in reply to win_56]

Thank you very much. My CA 125 doesn't say much, too. It was 50 on diagnosis.

I hope all goes very well with Rubraca and it gives all the desired outcomes with minimal or no side effects.

[win_56 in reply to Newbie_2020]

How often do you have scans?

[Newbie_2020 in reply to win_56]

On average every 3 months.

[win_56 in reply to Helen25]

Hi Helen very similar to me then....O will try and stick with the high doseage and see how it goes. Thank you for your reply. X