My wife Suzanne has been on the maximum dose of olaparib since October 2017 (finished 3rd line chemo in September) and so far so good - her CA125 has halved from 24 to 12.
Her MCV levels (size of red blood cells) are rising and the consultant says that Suzanne may need a pause in the olaparib at some point to allow her bloods to recover.
Has anyone else needed a pause in their PARP inhibitor treatment? If so, for how long and did it have any effect on your CA125?
Hello WoodyB
I'm sorry you've not had any replies yet. It may be because our members have limited experience of high MCV levels and feel they won't be able to help. You may want to change the title of your post to something like 'Olaparib - breaks in treatment' or similar, as that is what you are asking about and it's more likely some of our members may have had experience with this?
I hope you get some replies soon. If there's anything we can do to support you or Suzanne, please do get in touch.
Best wishes
Anna
Ovacome Support Service Manager
Thank you Anna! Much appreciated.
Hi Woody, as Anna said if you change your heading maybe our lovely ladies can help I've not had pro inhibitor yet, so can not give you any advice but I had to stop treatment becourse of my bloods and it's always been ok. best wishes to you and your wife ..
Lorraine xx
Thanks Lorraine! Good luck with everything
I'd query if they propose a pause on the grounds of a rise in MCV levels alone.
Most people on PARPS have problems with one or more of Haemoglobin, Platelets or Neutrophils and I think these are the more common reason to pause and possibly dose reduce. I think there are interactions between several of the blood measures.
Certainly in my case I had one pause due to platelets and another due to HgB. My MCV is consistently high and almost always above normal range and this doesn't seem to have concerned anyone, even when I pointed it out. The Niraparib didn't seem to affect this one way or the other.
Her CA125 seems to be responding really well, which is great. I think these drugs stay in the body for quite a while so I wouldn't worry too much if it does come to a pause. I started on Niraparib last September and initially my CA125 dropped by 20% but it didn't continue to drop and I've just come off it, with very low HgB and platelets and with evidence of new beast activity.
So she's done well to get this far without concerns about any bloods being raised before.
If you're not already doing it, I'd advise getting copies of all the blood results. Sometimes they focus on one thing and overlook trends in others which can be worth asking about.
Great reply Mac27, thank you. I hope you get good news at your next clinic.
My Olaparib had to be stopped because of my neutrophils which were dangerously low I am waiting to hear from consultant if there is anything else I can have. but still waiting for scan results and he said that markers are up but before the other consultant did not take any notice of this xx
I have had elevated MCV levels since I started taking olaparib on a clinical trial over 4 years ago. It has been explained to me that this side effect is common with all chemo, and that it shows that the bone marrow is under pressure. However, the docs don't seem overly concerned and my dose has never been reduced. I suspect that other side effects would have to kick in before that happened. I found that my MCV levels rose quickly at first but then plateaued. I don't even ask about them anymore.
Thank you, maybe Suzanne's MCV will plateau too. May I ask, are you still taking olaparib on maximum dose every day after more than 4 years?
Yes, on the trial I take it in pill form (not capsule) and take 2 tablets twice a day. Each pill is 150mg, so that's 600mg per day. This is lower than the capsule maximum dose but has been calibrated to deliver the same amount of the drug. Apart from the occasional missed dose, I have been on the full dose since I started on the trial just over 4 years ago.
I'm really pleased that you're doing so well on olaparib - it really is a wonder drug for some ladies. Which hospital looks after you? Suzanne's MCV 3 weeks ago was 107.6. She has the next round of blood tests this week.
It's been a wonderful drug for me, getting me my longest remission since diagnosis, and relatively minimal side effects in the process (heartburn, dizziness, insomnia, fatigue). I couldn't even tell you my MCV level these days, apart from the fact it is elevated beyond the normal range! I remember keeping an eye on it in the early days, then stopped asking once it levelled off. I'm being treated at a major cancer hospital in the UK (I'd prefer not to say which one).
Thank you. Long may your remission last (forever would be good).
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