Has anyone had experience of Rucaparib

Hi Muggins and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I don't have the experience you're looking for, but I noticed that your post hadn't had any replies yet. I've had a look in the group to see if anyone else has posted about being on 'rucaparib' but drawn a blank I'm afraid. However, responding to you will bump your post back to the top of the discussion list where it'll be more easily spotted and there may be people in the group who are on this drug but just haven't posted about it.

When you have a minute, it would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Hi muggins! My mum is currently going through primary  peritoneal cancer and is currently on Caelyx - her CA125 has been increasing and she also has had to go back and drain 4 litres of fluid out again…. It is SO reassuring to know that Caelyx worked for you after waiting - I am very worried as I’m not sure if she should change course or continue with this drug. Any further info you can provide on your experience with it would be so appreciated 

Hi Phoebe,

I am so sorry ro hear about your mum’s diagnosis, it must be such a worrying time for you. How many cycles of Caelyx  has she had and how many are proposed? 

You are right that my CA125 took a few cycles on Caelyx before it started coming down, in fact it went up initially, and although it didn’t get back to normal the Caelyx did the job of containing the cancer. (If you are interested in numbers it was 1319, 1535, 1204, then gradually reduced to 230 by cycle 6, and eventually to 98.   Unfortunately I had to stop the Rucaparib as it was adversely affecting my kidneys and my consultant felt it wasn’t benefitting me.   I then agreed to go on a trial, where there were two options - a trial combination of drugs or chemotherapy. Of course you are selected randomly and I was allocated to the chemotherapy option, which entailed weekly Paclitaxel for 24 weeks, which I completed at the end of June.  I am now a bit in limbo as I had to have some fluid drained when I finished chemo (only 500ml though) and my consultant decided to give me a break from treatment and will reassess the situation at the end of August.  She assures me there she has other treatments in mind!   I don’t know how helpful that info is and obviously everyone is different n their response to treatment, but I wish your mum all the very best. If she gets offered the chance to be on a trial I would really recommend it as you are monitored very closely and I received lots of support from the research team, which I found very reassuring.

Thank you so much Muggins for your response and sharing the numbers with me. My mum unfortunately hasn’t stabilised through the use of Caelyx and her CA125 marker has gone up from 1000 to 6000+. also the doctor said surgery isn’t an option at the moment until we have the cancer under control so it’s been tough trying to find a medicine that works. Thank you for letting me know about your Rucaparib experience too. I’ll keep you posted on what treatments our oncologist suggests next and it would be super to keep in touch with you too. Thank you for all of your help and sending you lots of best wishes and prayers for your recovery 

Hi Muggins,

quick question: did you take Avastin with your Caelyx or just Caelyx on its own? 

Hi Phoebe,

I’m so sorry to hear about your mum’s rising CA125 and do hope a more effective treatment regime can be found for her.

You asked about whether I had Caelyx with Avastin.  No, I had Caelyx in conjunction with Carboplatin, 6 cycles. (You can see what treatment I had before that from my original post so won’t bore you with that again!)

Out of interest, where is your mum being treated?   

You are obviously giving her lots of support and I know how important that is, and also having someone advocating for you is essential. 

Sending my very best wishes and do keep in touch. I will be thinking of you both. 

Thank so much Muggins for all your help! My mum is currently being treated in Hong Kong

Hi Muggins,  I'm new on here.  I was diagnosed Jan 19, had hysterectomy, debulking etc and 6 rounds of Paclitaxel and Carboplatin.  All good but it returned in Jun 20 so another op and 6 rounds of a different combination chemo.  I was then prescribed Rucaparib.  I don't think there can be many of us on it as I've struggled to find others also!  I had to reduce the dose as my liver was being affected but i've been on this dose now for over 2 years so the side effects have now stabalised.  The worst for me is the fatigue after trying to do anything energetic.  Also the 2 monthly Oncology appointments which to me are a constant reminder that I've been ill.  Hope you are getting on with it now