Rucaparib

[Caleda4]

Hello ladies,

My CA125 has gone down another 3 points to 11 so I am happy with that. I am going to try 400mg twice a day from the 3 February.. However the Oncologist has said that if I get problems then I can drop back to the 300mg twice a day.

I hope that you are all managing to cope during this lengthy lockdown.x

[delia2]

That’s great news! Long may it continue!

[win_56]

Hi Caleda - That's absolutely fantastic news for you!! I'm on 400 X twice a day. Here's to your continued success. My CA125 is 2.5 but it was only 3.4 on recurrence! Anyhow the few side affects I'm having is stomach cramping and a little fatigue. I joined the parb inhibitors group on face book and they said you have to give it a few months so hang on and it does get better. Your Oncologist sounds pretty good to start you on 300mg x 2 daily, and work upwards this seems the most logic way of doing this. I was put on the maximum dose a few months ago 1200mg per day and just couldn't take it any longer, side affects were terrible and I had no quality of life and to top it all my platelets crashed. Had my bloods done last week and was all ok since I have been on lowered dose. It is great news that you are getting these excellent news on this dose😊 wishing you all the best going forward.x

[Caleda4 in reply to win_56]

Hi Win, So good to hear that you are doing well on the 400mg x2 each day. Stomach cramping doesn't sound to good, so I hope that this clears up for you shortly. Great though that your bloods are ok, as that must be a relief to you.

I did start originally like you on the 1200mg per day, but felt so awful that my Oncologist reduced the dose.

I will take a look at the Facebook group, so thank you for that.

Take care, & I hope that the dose continues to work for you.

Caleda x

[win_56 in reply to Caleda4]

Hi Caleda I shall try and stick with the 800mg give it a few months. My Oncologist did say the lowest I can go is the dose that you are on 600mg so I shall see how it goes. Yes I was so relieved my bloods were ok. Going every 2 weeks for bloods for first few months to ensure all ok then switch to monthly. Fingers crossed these side affects will subside.

[Lyndy]

That’s great news Caleda4! I will bear your experience in mind when I get to start it. Have they said how long you will be on it? I wasn’t sure if there is a time limit or if you just take it until it stops working? (Which hopefully will be many moons away) xx

[Caleda4 in reply to Lyndy]

Hi Lyndy,

I suppose I should pose that question really. I will ask at my next Consultation later in February.

I hope that you get on alright with Rucaparib when you start.

Take care. xx

[JustKBO in reply to Lyndy]

Hi there I am on Rucaparib and have been told I will be on it until it ceases to be effective. It is basically to hold the OC at bay for as long as possible. Let’s hope it’s a long time.

[Mumsie13]

Hi Caleda. I am not on parps nor does it look likely to be but I just wanted to say how pleased I am at your continued success with these drugs - long may it last. Take care. Jackie.

[Caleda4 in reply to Mumsie13]

Thank you Jackie,that is kind of you. I hope that you are ok. x

[patricia54053]

Well done

[Caleda4 in reply to patricia54053]

Thank you,Patricia.

[Katmal-UK]

Wonderful news! So pleased for you ! xx

[Caleda4 in reply to Katmal-UK]

Thank you Kathy, 3 points lower on my CA125 is not much really,but at least it is still going in the right direction. Hope you are keeping well.xx

[Katmal-UK in reply to Caleda4]

Oh I dont know, I think that given its already low and dropped further is sooooo goid. Mine dropped from 7 to below 3 where its stayed.... Yours is definitely gone in the right direction x

[Caleda4 in reply to Katmal-UK]

Thanks Kathy.

[Realistic]

Fantastic your doing well, heres to the futureStay well & positive love & vitual hugs to you all SheilaFxxx

[Caleda4 in reply to Realistic]

Thank you Sheila, that is kind of you. xx

[Lizzieanne]

That's great Caleda I wondered how you were doing. So pleased x

[Caleda4 in reply to Lizzieanne]

I have been thinking about you Lizzieanne. How are you doing now on rucaparib? How were your blood tests? I hope that you are ok,. x

[Lizzieanne in reply to Caleda4]

Thank you. My bloods were ok. I get itchy and am sure it has affected my mental state. I feel so sad and feel I have lost the real me. Know we are dealing with covid and that my oc will not be cured but i have lived with this recurrence since May last year and yes felt sadness then but could pull myself up. So am not sure whether it is rucarapib making me feel like this. I ask myself what my chances of being in remission without taking any meds. My CA125 has been 7 and 8 since my lung was drained in May. Am pleased that you feel a bit better on lower dose and that if you have to increase it that your body copes. But you seem to be doing well on that lower dose xxx

[Caleda4]

Oh Lizzieanne, I do feel for you,as it is so horrible to feel the way you do. It does make you wonder if the remission would be as long without these drugs. It is great that your CA125 has been 7 to 8 since May. I am guessing mine might not go any lower,but so long as I don't get a recurrence any time soon I will stay on them. I have had down days, but i think it is to do with being in all the time and nothing to look forward to. I had my covid jab on Monday and feel ok so i felt that was another hurdle done. Have you spoken to your Oncologist about how you feel, because maybe they could advise you if it is the Rucaparib or not. I am pleased that your bloods were good so that is something, as obviously this can effect you. I hope that you will feel more like your old self again soon. Take care. xx