Hi ladies , I want to share my experience of Olaparib with you and ask if anyone else has had this experience.
I started Olaparib in Nov 2021 as part of the Icon 9 clinical trial, I am on 600 mg per day.
I am managing the treatment fine, no problems whatsoever and I feel well. My CA 125 has been climbing since I finished second line chemo last September, it has now risen to 129. The onc says that we shouldn’t rush into chemo in order to treat a rising CA125. She believes that while I feel well and symptom free we should not worry to much about the CA125. I tend to agree with her because I know the longer the gap between chemo the better. I am having a CT scan within the next month so maybe that will shed a light on things.
What do you think ladies? Has anyone found themselves in a similar situation?
Thank you and warmest regards
Dusky aka Christine x
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Duskygem
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Hi Christine, interestingly I am on the parp Rubraca, and have been now for a year. My dosage is 1000mg per day,although I have worked up to this level as was on a lower dose. My CA125 after I finished chemo in October 2020 eventually went down to about 12 and it went up but not by huge amounts. However since having the covid jabs it has steadily risen and now sits at 106. I had a scan Sept 2021 where there was nothing shown as growing at at that time my CA125 was 114. Obviously it is concerning but like you my Oncologist has don't worry. Haha!! . Anyway I will be seeing him again in six weeks and a decision will be made whether or not to have another CT scan. I do know that before I showed any symptoms in 2020 of first recurrence my CA125 was 523. Like you I feel really well,eat well exercise, walk etc. Anyway I hope things go well for you, i will post again if i do have another CT scan and let you know what transpires. Take care.x
Thank you for your reply Caleda it was helpful. I did not consider the COVID vaccine as maybe contributing/causing CA125 to rise. I will speak to the onc about the dosage of the olaparib as it seems low to your dosage for Rubraca. It maybe that my dosage is set by the clinical trial but I will ask. Thanks again and long may you be active and wellBest wishes
Just for your info I’m on 400 mg Olaparib a day . Started on 600 , which is usual dosage , but kidney function was a bit off , so lowered and been on this dose for two years .Jennifer
HelloOn the question of doses, you can't compare between different PARPs. I was on Niraparib 100mg but couldn't tolerate even at that dose, so now I'm on Rubraca 800mg and managing fine. I questioned the vast difference and was told that it's all down to how they interact at a cellular level and Rubraca needed a much higher dose to do the same job as Niraparib. Hope that helps.
Hi SallyIm glad you posted this info as i was just wondering about the differences between parps. Im on 100mg Niraparib and had to reduce down to this. I think i will ask the nurses on this site to explain the differences. How do our oncologists decide which parp we need?
I think some of the decisions are historical based on original trials and BRCA status, and now NICE guidelines and Cancer Drug Fund funding, but also centre specific preferences? My oncologist (and myself) were keen to persevere with PARPs given my BRCA1 positive genes!
I am hoping that my slightly rising ca125 (17,18,20) on Olaparib is not evidence of recurrence. It was after the covid jab so maybe it was that. I am guessing that the ca125 may creep up in the year after chemo anyway as it settles. I have an autoimmune condition, so my inflammatory markers can be higher anyway.
It’s tricky because it’s easy to become obsessed by the marker, particularly as I have lost confidence in my own ability to tell if I am well or not xx
Hi LyndyThanks for your reply. As I said to Caleda, I didn’t consider that the vaccine could affect CA125 and the onc didn’t mention it either! Like you I wonder sometimes if I am in denial about feeling well, I don’t have pain for sure but sometimes I feel tired and I am determined not to give into it. My family still see me as the ‘super woman’ I have always been and expect things of me. Maybe I should go on strike!
I hope you keep well Lyndy and Olaparib works for you. Btw what dosage are you on?
Oh Christine I empathise with you! Im trying to continue being supermum. Only work 2 days a week now but im so tired the following day. Yestrday i got a stress headache beating myself up about all the stuff i didnt do cos i had to go back to bed for a nap. I take 100mg niraparib. Please be kind to yourself. X
Duskygem you sound similar to myself its rare l ever say l don't feel well and always keep on going. My CA125 has risen from 9 in a year 11 15 17 21 22 and it does put doubts in your mind.lm classed as NED because lve been thankfully clear since chemo. They had put me on 6 monthly checksAnd l asked recently that they see me 3 monthly for me l think thats too long.
So l will be having a scan & consultation when we get back off holiday. But l also think the vaccines might have caused it. I had a booster
Then shingles & then a flu jab. All within a matter of weeks. So lm praying its that .l do get on with life and enjoy it, and like you everyone calls me wonder woman. I have a valve in my head too control a brain tumour which gives me no trouble at all. My CA125 was in the thousands before chemo so the chemo did the trick. Just want too always be aware of whats going on in my body never had any pain or discomfort with my ovarian cancer but l think thats the problem really its silent. So if we don't feel right we need to contact our cancer team for advice never ignore things.Hope your tests come back negative and l am going to ask about this
CNC test thats out apparently but l believe
may have to pay for it privately but sounds like its worth it. Going to ask at the hospital when l go love & hugs SheilaFxxx
Hi SheilaThank you for your reply, fingers crossed the ca125 is jumping about because of the vaccines. I hope you continue to feel well and get all the right test results.
Thanks Christine Im going on holiday whatever, lifes too short not to enjoy . So good luck with your treatments sometimes what works for one doesn't work for another we just have to hope for something else that will work. Things are getting better for us all, of that lm convinced. So keep positive, l will hopefully get my tests when we get back off our. holiday. Keep me informed how your getting on and take care.
I finished second line chemo in march 2019 and started trial icon 9 in April.
My CA125 was 49 when finished chemo and went down to 17 until April 2020.
Since than start going up and up .Now is 260 .
I have done CT scans every 3 months all this time ,nothing comes up,I am still well, no problems .
I am on wait and watch,my oncologist thinks that as long I am well no need to rush in to chemo so I just live my life as normal. I am getting used with this situation now, is like this for 2 years now.
I got all the vaccines but I don’t think is anything to do with that, it start raising one year before I got them.
I know is not easy but try not to worry to much and enjoy the good live as long is possible.
Hi DanielaThank you for your reply. I am sorry to hear about your situation, it is so similar to mine and it reassures me that ‘watch and wait’ is the right way forward while I feel well. Can I ask Daniela, re Icon 9, are you in the control group - Olaparib only, or the experimental group - Olaparib and Cediranib ? I ‘m in the control group.
Like you Daniela, I keep busy and active and I am making the most of my good health.
Hi Christine, I posted the same almost exactly a year ago. Eventually a scan showed the little blighters had returned. I had Carbo/caelyx but it wasn’t effective, changed oncologist, who was happy with watch and wait as I was healthy with no symptoms. So a year later I have just started on weekly taxol (Abraxane). Had a fab year and still feeling great and working full time. Even if the Olaparib isn’t working there is still more to be done and hopefully plenty of good times ahead. I know it’s hard but just try and take it day by day. Stay well, life’s too short to worry.😀 all the best and take care. Bex xx
Hi Christine. Thank you for posting. I'm on olaparib 600 mg a day. I had a consultation with onc. This week as like you my ca125 is rising, when 1st diagnosed it was 418. After lots of chemo and starting olaparib it went to 9 for last 6mths had slowly been increasing it just done big jump from 21 to 71.
Which really is scary.
I've been told few things but being put on list for scan this month and face to face consultation mid February.
I'm hoping no growth. I've had 3 covid jabs am about to have 4th next week.
I was unable to have operation to debunk so I've only had chemo. As where cancer is it's not operable. I'm ok with this my family say same I'm so strong 💪 but I'm just me yes I do get tired quickly and weaker but while I'm here I'll keep being me for as long as I can.
I'm hoping scan shows no change as I really won't go be in pills as long as possible. Otherwise I may b able for a trail that's been said yes depending on new biopsy. Or alternatively more chemo.
Hi AmyI am sorry to hear about your rising ca125, it is probably because of the vaccines. All the best with the scan. Stay strong and positive and keep me posted on your progress.
Hi Christine , I am not yet on a PARP but after my first op and chemo and whilst on Avastin , my Ca125 climbed steadily . However , as I felt really great ! And symptom free my onc ( sensibly in my view) waited until something showed on a CT scan) . Even when my Ca125 was over a 1000 only a very tiny change appeared on the scan so I started 2nd chemo at the beginning of December 2021. I’ll have 6 treatments 4 weeks apart then another scan. 🤞So I was pleased to have 8 months of a ‘ normal life’ before starting chemo again . I hope that is helpful. It is a long slog for us all and I keep hoping a new drug will be found that is effective for all of us in this situation . I hope that can put your mind at rest x x
Thank you for your reply. So far my CT scans have not showed too much cause for concern. I have a another at the beginning of March so hoping that will be be ok too. I guess we have to just live our lives and enjoy feeling well.Best wishes
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