Olaparib

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Hi all,

I was diagnosed with stage 4 prostate cancer in Jan 2020. After a year I was prescribed olaparib and this has kept my PSA undetectable ever since. There has been little growth of cancer seen on the various tests / scans. 

I post here as I have the BCRA gene or whatever it means! .. this being the reason I was able to be put on olaparib. On the prostate cancer forum I don't think anyone has the same medication so I came here to find out more about people's experience with olaparib and what to expect longer term. 

Thanks for taking the time to read this and would welcome any experience from people who are on olaparib 

  • That's great that Olaparib has been working so well for you. Will you continue to take it for as long as it works?

    I had breast cancer last year and after treatment I found out I had a BRCA1 mutation too. My doctor put me on Olaparib to hopefully prevent a recurrence, so I started taking it in May 2022 and I will be prescribed it for a year. I don't think I have the long-term experience that you're looking for, but my experience so far has been good on Olaparib. Blood tests show that my immune system is lower and my kidney function slightly decreased, but other than that I have no side effects and feel very well. Do you have many effects?

  • Yes I'll be on these meds until they stop working so hope the last a while! 

    I think olaprib works well in slowing the cancer but again  I have very little feedback from on the whole thing really can only go on my own experience however your post is reasuering to know other people get benefit from this drug. 

    I have some bother with my feet which is being looked into apart from that you wouldn't think I got cancer as really quite well and I think it's down to olaparib that I have little cancer related symptoms. But thanks for posting always good to see folk are doing well despite this nasty cancer thing going on :-) All the best 

  • Hi Donchadh, 

    I am in the last 6 weeks of Olaparib after having Breast Cancer and being diagnosed with BRCA2 variant. I would be interested to know how you have been since the treatment?

    Best wishes

    Jxx

  • Hi Rose22

    I am in the last 6 weeks of Olaparib after having Breast Cancer and being diagnosed with BRCA2 variant. I would be interested to know how you have been since the treatment?

    Best Wishes 

    Jxx

  • Hi J,

    I finished taking olaparib in May 2023 and continue to be really well and cancer free. I had a preventative double mastectomy in March 2023 (due to having BRCA1 mutation) so it was nice that I took olaparib during the year when I still had breast tissue and no other treatments - it felt like a very good safety net. It was a nice transition that I stopped olaparib not long after my mastectomy as I don't feel like I am not as worried about getting breast cancer now since my risk is greatly reduced (even if I understand there is still a chance).

    I had a blood test at the end of May which showed my kidney function was already starting to recover well and, for the first time in a couple of years, my neutrophils were almost in the normal range. I will have my next blood test in November so hopefully things will show more improvements (oh how I dream of everything being 'normal') and most importantly, I hope the cancer markers will remain in the normal range!

    Have you been prescribed olaparib for a year for an early BC diagnosis? Have you been feeling ok too whilst taking it? Also, have you gone down or started to explore the mastectomy route?

    Rose x

  • Hi Rose,

    Thank you for your reply. I was diagnosed with Stage 3 Grade 3 Breast cancer in September '21, so been through chemo and radio. 

    I was prescribed Olaparib in October '22, I found the 300mg twice a day a little too much so ended up on 250g twice a day which has been fine. I've been good, just the obvious occasional low blood count and in the early stages and my kidney function was low. But recently bloods have been better and kidney function is fine. I get my last dose in just over a week so looking forward to life after!

    I am in the process of arranging a double mastectomy (as I had breast conservation as they didn't know about the BRCA2 at the time of diagnosis). I am also having my ovaries and fallopian tubes removed. Just to be on the safe side. 

    It's great to hear from someone out the other end but it's a shame more people don't know about Olaparib as a preventative.

    Did you have reconstruction? 

    Good luck for November and take care.

    Jxx

  • Yes, I can understand that you're looking forward to finishing it. Even if I felt fine on it, it was really nice when I stopped taking it and no longer have to remember to take it! 

    I was like you and had breast conservation in the beginning and only found out about the brca1 at the end of it all! I opted to go without reconstruction as I'd already had 3 operations during my treatment and wanted the simplest option with the least risk and the least number of operations in the future. I know it's not for everyone, but I have felt so happy and free since the operation and I know it was 100% the right choice for me. I honestly have zero desire for any reconstruction at any point. Have you thought about if you will have reconstruction?

    My sister is also a carrier of the same faulty gene (although she never had cancer) and she recently had a mastectomy with implant reconstruction and she is also recovering well. She turns 40 next year and has also been recommended to have her ovaries removed. She will hopefully take part in the PROTECTOR study, which is trialling an option to remove only the tubes in the beginning so she can keep her natural hormones - I think they then remove the ovaries when the patient reaches the natural menopause. The theory is that a lot of ovarian cancers start in the fallopian tubes, so by removing them first, it reduces the risk. Depending on your age, I just thought I'd mention it in case it could be useful!

    Good luck with your last few weeks on olaparib and all that the future entails!

    x