Should I reduce dose of Olaparib?

[meadowgirl]

Hi Everyone

I started maintenance treatment for HGS in August having had Taxol/Carboplatin 6 rounds with interval debulking surgery January to July.

Because I am HRD I am being given Avastin 3 weekly and Olaparib 300 mg twice daily. Unfortunately I am struggling with side effects. I get tired very easily. I have a very poor appetite and struggle to maintain my weight of 62kg. My oncologist now wants to reduce the dose of Olaparib to 200 mg twice daily and I have to give an answer next week. I am currently NED and my Ca 125 is stable at 10. The question is should I accept a dose reduction or will I live to regret it?

I hope you brave, experienced ladies can help me make a decision.

Many thanks.

[Lyndy2]

I think some recent research has indicated that reducing the dose had no effect on the outcome. But I can’t remember where I read it! Sorry! It’s worth hunting around for that study… you would still be on 400 a day xx

[meadowgirl in reply to Lyndy2]

Thanks Lyndy. I have done a bit of searching around but hadn’t managed to find anything except heresay. I will keep looking 🙂

[CFVD in reply to meadowgirl]

Hi meadowgirl, did you come across this study? Might be worth a look. All the very best to you in your decision. clearityfoundation.org/olap...

[meadowgirl in reply to CFVD]

Hi CFVDD. Thanks for responding. I will take a good look at this study. At first glance it seems to be looking at patients with a recurrence and not along with Avastin but I will read it through later, when the weather isn’t tempting me outdoors 😀😀

[Katmal-UK]

Hi. Have a look at the fb group for Olaparib and ask your question there. There are a lot of ladies on a lower dose and who maybe able to help you with your decision x

[meadowgirl in reply to Katmal-UK]

Thanks for responding Katmal. I will certainly look at Facebook. It would never have occurred to me to search for up to date clinical information there but I can see where you are coming from and I will certainly give it a go. Hope you are having a sunny day where you are 😎

[Rhonddalady]

Hi, I started on 300mgs in September 2020. After a month of similar side effects to you, my dose was reduced to 200mgs. My CA125 has been stable at 10/11 for the last 2 years. I still had some side effects but much milder and coped better with the lower dose. I completed my 2 years last month and I am still NED . I'm proof it still works just as well with a lower dose. I hope your journey on this difficult road is as positive as mine is . I am a little apprehensive as to what the future holds without this medication, but am so grateful they've worked so well for me.

Jan xx

[meadowgirl in reply to Rhonddalady]

Hi Rhonddalady. Thank you for responding with such a positive story, which gives me hope. I am so pleased to hear that dose reduction worked for you. I need to continue to gather as much information as I can but am leaning towards a lower dose. I am normally a very positive person but at the moment, some days I feel so sick and exhausted I wonder what it’s all about x

[Trickysite]

hi, Iam on 200 mg twice a day (Avastin not recommended for me). The dose was gradually stepped down from 300mgtwice a Day as I kept needing transfusions for Olaparib induced anaemia. For last 3 months I have not had this side effect. I think they start everyone on 600 mg and then step down as necessary and stepping down is not unusual. I am just grateful I am tolerating this dose! Good luck. Emma

[meadowgirl in reply to Trickysite]

thanks for responding Trickysite. It’s good to hear that the lower dose is working for you. So far my bloods have stayed within normal limits, but it’s early days yet.

I wonder if it is possible that dose should be adjusted to patients weight, like Avastin. Now there’s a research study waiting to happen. I did say to my Oncologist that surely someone with a body weight of 60 kg doesn’t need as much of the drug as someone who is, say 85 kg but he said there is no evidence to show that. Had a nice day 🙂

[Trickysite]

Actually, if you read the Clearity link that CFVD sent you, you will see that it says precisely that! i.e. low weight people probably need a reduced dose. I am about 8 and a half stone and just under 5ft tall. I recall quite a lot of low weight ladies on here have said they had their dose reduced. I suggest you read the link and then politely draw your oncologist's attention to it!

[meadowgirl in reply to Trickysite]

Thanks Emma. I will read the research that Clearity highlights x

[delia2]

Hi. I would reduce the dose. I have never been on more than 400 and after a year I went down to 300 mg per day. So far it’s been 2.5 years and I am ned. Initially I still had a small tumor but the Olaparib got rid of it so we know it worked at that dose. Go for the reduction! Xx

[meadowgirl in reply to delia2]

thank you for responding, Delia and sharing the good news about the success of your reduced dose. Helping me to see that it could work for me too. All the best for the future x

[Realistic]

Good luck,meadowgirl, l know your tired at the moment but reading these wonderful girls on here a reduced dose seems to be the main answer . Hope you take the right decision it not easy when your so tired l know but your brave & determined and hopefully you'll soon feel better on a lower dose. God bless love ❤ & hugs to you. SheilaFxxx

[meadowgirl in reply to Realistic]

Thanks for your supportive words, Sheila. This forum is great for making you feel you are not alone on this journey. We all have different struggles I know and friends don’t always understand 🤗

[Realistic]

Good luck,lm sure you can do this. It just not easy when your not at full strength. I think lower dose is the way to go for you..love & big hugs SheilaFxxx.

[Mysticmeg123]

Hi. I was no the same regime of Avastin and 600 mg of Olaparib. After just 4 weeks I I was struggling so my Onc. stepped it down to 300 a day. I was worried about the dose reduction but my Onc said it won’t affect the efficacy. The difference was immediate and I could actually function normally. I’ve been on the lower dose ( finished Avastin) since March and so far no issues. Only side effect is bitter taste for first few hours in the morning I hope reading everyone experiences gives you comfort and helps you to arrive and the right decision for you. Good luck 🤞

[meadowgirl in reply to Mysticmeg123]

thanks for responding Mysticmeg. All of these stories have encouraged me to go for the dose reduction. It so helps to hear that it has worked for others.

[paulamma1]

hi, just saw my pa yesterday and they explained that if I was to go on Lynparza today, they’d start me on 200mgs twice a day rather than the 300mgs x2 I’d been getting. Apparently there’s new data out that says there’s no long term difference between 200 and 300.

She also said that if my blood marrow was to get totally wrecked, they’d stop the PARP altogether so, I’ll be going with the 200mgs after I get through a couple little surgeries (I’m taking a little break to get my platelets up).

All the best! xx

[meadowgirl in reply to paulamma1]

Thanks Paula. It certainly does sound as if the lower dose might be more suitable for some people. Hope your surgery goes to plan and you get your platelets up. I had nosebleeds when I was on chemo and looked up foods to boost platelet production and read that that pomegranates and kiwis are good so ate lots of these and the last month I had no nosebleeds 😀. I had to eat the pomegranates outside as they are so messy!