Finishing Olaparib

[suzannebirch]

I'm 2 yrs NED and have been taking Olaparib for that time. Oncologist now finishing me as he says that it will have longer term effects on bone marrow. BRCA negative but tumour positive for mutation. But I read on this feed that some of you have been taking it for longer. I don't want to stay on a drug longer than I need but concerned that I also now go from monthly bloods to 6 monthly checks which scares me. Any thoughts or advice? Anyone else in the UK staying on Olaparib after 2 yrs who are NED? Any advice on getting more regular checks? Thanks

[Mysticmeg123]

Hi Suzanne. Firstly, congratulations on your NED status. Long may it continue! Like you I have been on Olaparib and will finish my 2 years in February 2024. Whilst I am looking forward to saying goodbye to the side effects( joint pain mostly) I am anxious about a reoccurrence once I finish. I am HRD positive so Olaparib was the best route for me. Currently I am monitored with blood tests every 3 weeks and that gives me reassurance as my Onc says CA125 is a good marker for me. I am not sure how I will feel once this is changed to 6 monthly. I too would be interested to hear from others who have remained on Olaparib for longer than 2 years. Wishing you continued good health and sending you positive vibes x

[suzannebirch in reply to Mysticmeg123]

Thanks for replying. Let me know if you get any news. Wishing you prolonged good health. What stage were you? X

[Mysticmeg123 in reply to suzannebirch]

Hi Suzanne. I was diagnosed as Stage 2 but then because they found a spot on my omentum they said 3! In any event, it doesn't matter what stage because treatment plan would have been the same regardless of staging. After 3 rounds of chemo, my CA125 was 4 and has fluctuated between 3 & 4 ever since hence fuelling my anxiety about coming off the Olaparib. There is no way of knowing if the Olaparib is keeping everything at bay or whether it was the chemo!! My Onc cannot answer it so I try and remain positive about the outcome 🙏

[RoseMS]

Hi. I completed my 2 years of Olaparib a year ago and remain well with CA125 at 6. Was terrified to come of the Parp but no choice, same as yourself. I too am BRCA somatic only. I have 3 monthly bloods and 9 monthly CAT scans. I saw on my notes at clinic last week, ‘remains biochemically repressed’. Im taking it they mean the Parp is continuing to work long after the 2 years. Good luck with everything.

[delia2]

Hi. I too am somatic brca1 and was on Olaparib for three years but took after recurrence. I was supposed to stay on it indefinitely but was taken off it because of the risks. I’m still ned after8 months. I have bloods every three months and a scan every six only because CA125 is not a marker for me. If you google final results of SOLO1 trial I think you will be reassured.

[DinkyAnnecy]

Hi. I just completed my 2 years of Olaparib in September. When Olaparib is given after first line chemo it is only for 2 years. Olaparib is also given to women whose cancer has returned and it’s those women who can be on it for years. My oncologist at Memorial Sloan Kettering says that in the future, Olaparib after front line chemo might be prescribed for a year. Good Luck to you!