Olaparib dose reduction: Hi all. I've been on... - My Ovacome

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Olaparib dose reduction

Carpediem68 profile image
21 Replies

Hi all. I've been on Olaparib and Avastin for 2 weeks following frontline chemo for OC and already I've been told to stop because my white blood cells are way too low. I was on 600mg Olaparib and the nurse said to have a break and then if bloods improve to start again on a lower dose. I have heard some ladies say they have had dose reductions due to low red blood cells or platelets, has anyone else had this with low white blood cells? And did the dose reduction help? I also had a covid booster just before I started treatment. Has anyone seen any effect on bloods by the covid vaccine? I have been banking on taking Olaparib as I am BRCA1 so I'm getting quite worried I won't be able to tolerate it. Thank you.x

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21 Replies
Lyndy profile image
Lyndy

Have they stopped Avastin too? If you are BRCA I, I would have thought the target is to get you on a good dose of Olaparib, maybe leave Avastin for later? xx

Carpediem68 profile image
Carpediem68 in reply to Lyndy

Hi Lyndy

Many thanks for your repy. I did question that. The nurse said the low white blood cells are due to the Olaparib, not the Avastin. Though I'm not sure how she knows that as I think Avastin can cause neutropenia too but she said usually not. I will raise this again next week though so thank you x

Kjpip profile image
Kjpip in reply to Carpediem68

Hi Sam, I haven't started my maintenance treatment yet but am due the same combination as you and just thought I'd say my consultant also told me that avastin doesn't cause low white cell count, it's the olaparib that does that (although I'm sure I've read low white cells as a side effect of avastin somewhere!) Good luck, hope you pick up soon 🤞❤️

Carpediem68 profile image
Carpediem68 in reply to Kjpip

Hi Kerensa

Thanks for letting me know. I did read on the Paola trial that some patients on Avastin had low wbc but it was more prevelant in the Olaparib/Avastin group. My nurse did say before i started that dose reductions were quite common so I'm trying not to worry just yet. I don't think it helped that my bloods hadn't even recovered from chemo when I started. I also had my 4th covid jab after last chemo which made my wbc dip. I'll let you know how I get on next week x

Katmal-UK profile image
Katmal-UK

Hi Samantha. I have been on Olaparib for 8.5 years on the back of a trial. I am also a member of a fb group Lynparza/Olaparib Support and you may want to join and pose your question there also as you will reach a wider audience of ladies (and gents) who are on reduced doses. I hope you get some help. Kathyxx

Carpediem68 profile image
Carpediem68 in reply to Katmal-UK

Hi Kathy

Many thanks. I've just joined that now. thank you for letting me know. Have you been on 600mg the whole time with no interuptions/blood problems? So glad to hear you have done so well on it! xx

Katmal-UK profile image
Katmal-UK

Yes, I have been lucky enough to have been on 600mg all that time with no issues. Thank you x

Carpediem68 profile image
Carpediem68 in reply to Katmal-UK

That's faulous news. Long may it continue xx

Trickysite profile image
Trickysite

Hi Samantha, I am BRCA2 and started, after first 6 chemos and op, Olaparib alone last Jan. I have had 2 haemoglobin dips and two rests from Olaparib fir two weeks each. Dose was reduced from 600 mg to 500 and now on 400 for the last week and waiting to see. This situation seems to pop up with lots of ladies as there are regular email trails on here about it, as I have discovered since I found myself in this quandary. Ladies are on doses from 200 a day upwards. A fair number on 300 a day. They report they are doing well. So, take heart. I think that, because this is a fairly recently approved drug fir mass use, the oncs are learning how to use it, as are we the patients! As one lady queried, why are they giving the same dose of 600 to both heavier and lighter weight Ladies? Often, doses are calibrated to weight. My oncs decided I should not have Avastin becos I have Ehlers Danlos and they were worried about arthritis. Like you, I was desperate to take Olaparib becos of my BRCA and very disappointed to find myself with probs on tolerating. Now feel slightly more relaxed and have fingers crossed fir both of us. I have not seen a post from anyone saying they could not tolerate it at all.

Carpediem68 profile image
Carpediem68 in reply to Trickysite

Ah, thank you for your reply! It does reassure me that others are having dose reductions too. My nurse did say the same as you, that they are still trying to work out the right dose for different weights. My nurse said that as I am under 70kg, a dose reduction is not too suprising so I'm keeping my fingers crossed. It's annoying as I don't have any other symptoms (so far) other than very low wbc which I cannot treat or control. I am going to see if I can stop Avastin for a while while we sort out the Olaparib but the Cancer Fund rules are ridiculous so i probably won't be able to. Good luck with your lower dose too. I'll be keeping my fingers crossed for both of us! xx

DinkyAnnecy profile image
DinkyAnnecy

I am seconding Lyndy’s response. I am Brca1 and on Olaparib as well. From what I have read, Avastin seems to more commonly affect white blood cells than Olaparib. I would ask the doctor directly if you can. Olaparib seems to be more commonly used for Brca and only sometimes adding Avastin, after frontline.

Carpediem68 profile image
Carpediem68 in reply to DinkyAnnecy

Thank you. Yes, I’m going to see if I can stop the Avastin for a while while we sort out the Olaparib as that is the more important drug for me I think. It’s all such a minefield! Thank you! Xx

delia2 profile image
delia2

Hi. I’d echo what others have said. When I started Olaparib my oncologist said she was starting at 400 mg/day to give my bone marrow a chance to recover from chemo. I was on that for a year and then went to 300 because I was having too much fatigue. I don’t understand why you need Avastin with it? The combo does increase side effects. Xx

Carpediem68 profile image
Carpediem68 in reply to delia2

Hi Delia

Yes, I wanted to do it that way, start small and then increase but the UK has a very strict drug protocol and they start with full dose and will only reduce down to 400mg. if you can't tolerate 400mg it is stopped. Olaparib with Avastin is quite a new regime based upon the PAOLA-1 clinical trial. I can drop Avastin though. Obviously Olaparib is the most important and that's what i need to get right. I asked for Avastin to be added later but again, the protocol says both together or no Avastin at all. It's very frustrating x

thejoannabell profile image
thejoannabell

I had the same experience on niraparib, and my dose was lowered from 300mg to 100mg, and then they added Avastin. 300 mg was intolerable, but I am doing fine on 100 mg and a tiny nodule of concern shrunk at first, then has since remained stable. It can be a rough road until you find the right dose for you., though. Hang in there!

Carpediem68 profile image
Carpediem68 in reply to thejoannabell

Hi Joanna

Yes, i think the US is more sensible and flexible with their drug protocol. In the UK you have to start both drugs at the same time. i wanted to add Avastin in later but I wasn't allowed. Hopefully I will get a dosage that I can tolerate though. Thank you for your repy! x

Mysticmeg123 profile image
Mysticmeg123

Hiya. I just want to reassure you if I can. My onc started me on Avastin and 600 mg of Olaparib. I could not tolerate that dose. My white blood cell didn’t drop but I felt just awful so she dropped my dose to 300. She said the lower dose doesn’t affect the efficacy so I was happy to try the lower dose. I have 3 weekly Avastin and the new dose of Olaparib which I seem to be tolerating better. The Avastin does give me joint pain but I find daily yoga helps to lessen the pain. I am HRD positive so am desperate to tolerate the new drug regime. I really hope your Onc can find the right balance for you It’s trial and error at the outset but they will help you to find the right balance. Good luck x

Carpediem68 profile image
Carpediem68 in reply to Mysticmeg123

Thanks so much for your reply. That is reassuring, thank you. Yes, I hope it works for me - and for you too! x

Lymbrae profile image
Lymbrae

I've been on olaparib for just over 2 years. Was initially on 600mg but cut to 500mg after red blood cell count dropped. Haven't needed blood transfusion since dose stopped and all blood counts have been great. However my last blood test showed low WBC. I had also recently had my 4th covid vaccination so am wondering if there's a link. Having more blood tests in a couple of weeks & hoping WBC has recovered.

Carpediem68 profile image
Carpediem68 in reply to Lymbrae

Hi Lymbrae

Many thanks for your reply. That is interesting, thank you for letting me know. Do let me know if your wbc count improves. I do hope so. Best wishes to you. Sam x

Kjpip profile image
Kjpip

Hey Sam, just wondering how you're doing with your wbc count now? Have they adjusted your olaparib dose? X

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