hello, I was on Rucaparib until today. My ovarian cancer has reoccurred three times in three years. I was taking this for three months my CA125 was 27 after last treatment then went to 42 then 71 then 171 and today 1074 I have spoken to oncologist she is gloomy and said to stop it is not working. I am not BRCA responsive but negative these tablets seem to say there for BRCA positive which I am not.
I have today made appointment for a second opinion with a top professor in London but has anyone else taken this pill who has been BRCA negative
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Peewe
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hi Peewe I am so sorry you are having these issues. My daughter is having similar on Niparabib. I would like her to have a second opinion. Who is the top professor in London you are seeing please? Thank you
Her name is Professor Christina Fotopoulou she is Greek I am seeing her on 17th June she charges £500 for first consultation but I have no confidence in my oncologist she never has any time for me and is incredibly gloomy. Miss Fotopoulou is based at Hammersmith hospital and when I emailed her she came back very quickly with an appointment. Good luck to you I hope this helps
Hello Peewe I took Rucarapib and Im BRACA negative it didnt work for me and also made me feel very unwell. Think I took it for about three months was given a scan and it showed it wasnt working so my oncologist told me to stop. Good idea to get a second opinion, I had further treatment with carboplatin which gave me 2 years have just completed a further carbo treatment. Hope you get some good advice.
Hi yes I was put on Rucaparib but struggled with low Hb and had five blood transfusions despite dosage being lowered. Also my CA125 increased whilst I was on it had CT showed spread so Rucaparib was stopped. I'm BRCA wild type. Have since been on carbo caelyx now weekly taxol to keep it at bay xxx
Hi, sorry to read your news. I’d say Christina is a surgeon rather than an oncologist, but she’s a real marvel and knows everything. I went to her for debulking surgery.
Don’t know anything about your Parp or who it’s normally prescribed to. Here in Scotland BRACA negative women like myself are all on Zedula/ Niraparib.
Hi, I’ve only been on Niraparib since start of April, so hard to say whether they are working. The side effects thus far have been manageable and I’d say diminishing. I’m replying from holiday in Sicily- and feeling pretty good and grateful!
I’m S3 HGSOC. Like I said, all BRACA neg women here are prescribed this after a positive response to chemo. I know some women who have been on it for 1-2 years and still NED, but I also know a few who have recurred within a couple of months after starting 🥲
Hello Peewee Really sorry about all you are going through. I was on rucaparib for about 18 months before it stopped working. I am BRACA wild type and my understanding of maintenance drugs from attending an Ovacome webinar is that if you have not got the BRACA gene you are prescribed rucaparib and if you have the gene you take either Olaparib or Niraparib. I would certainly carry on with your second opinion which I think is always a good idea. After I stopped rucaparib I had more chemo carbo and caelyx and then later just carbo. I had some months of stability before some progression so I am awaiting the start of weekly taxol. Also I have an appointment at Guys Hospital to see if there is a trial I might be suitable for.
This disease certainly throws up many challenges. Do hope you get a good result from your appointment. Let us know how you get on. In the mean time onwards and up wards. Hope some of this helps. BB.
I'd be interested to hear about your trial at Guy's. That's the hospital I'm at and I only recently learned (at Ovacome Day) that they conduct trials at all. x
Hi Thanks for your message. I am based in Brighton but my Consultation oncologist is really up on trials and she referred me to Guys. There are trials going on all the time you must ask your oncologist. I have just attended Guys for the first time to discuss a possible trial which might be suitable for me now I am carbo resistant. It is in phase 1 so very much the early days. There is a lot to think about for me as I live in Brighton as the trial would involve alot of visits to Guys and a period of in hospital treatment. The trial as I understand it involves an antibody and immunotherapy targeted on the cancer. I am still mulling over things as I only saw the consultant yesterday. Anyway do ask about trials as you never know there may be something suitable at some stage. Hope all goes well for you. BB.
Oh I can't believe this. I have asked about trials at Guy's and been told there are none relevant to me but maybe it's because I have clear cell.. I think I am carbo resistant but cannot be sure as I didn't have a baseline CT before chemo then wasn't scanned after first NED. Recurrence had to become visible and tangible before they would consent to scan. I hope you get a good consultant. xx
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