Olaparib side effects advice please

[NIKKibailie]

Hey

I have advanced germ cell/clear cell ovarian cancer which is extremely rare but my onco is giving the parp a go. It came up from my molecular report of my tumour which says it could work. Anyway, it’s early days and I’ve only been on it a month but feeling so tired, achy under ribs and back and breathless. I do have small tumours on liver and the bowel and have no idea what’s going on but I’m hoping these side affects are in relation to olaparib... can anyone give me some advice or there own experiences? Can it help solid tumours? How long did it take to have an effect? I’m 42 and have had so much treatment that I’m feeling a bit lost and low... to top it off I’ve had to apply to a charity to fund this as I don’t have an

Epithelial Tumour so NHS won’t fund me. Thanks so much x

[Lyndy]

Hi NikkiI am sorry to hear that Olaparib is giving you these effects. I start it on Tuesday... so I am busily wondering what it’s going to be like. My team have said that should the side effects be intolerable or last for more than 6 weeks they will lower the dose. So perhaps this is the way to go for you and it might even make your funding go further xx

[NIKKibailie]

Thanks. Fingers crossed for you x

[mupash]

NIKKI- ARE YOU GOING TO USE OLAPARIB? AZ WILL GIVE YOU THE DRUG IF YOU EARN $62,000. OR LESS.

LEE

[Jacky5]

I'm sorry to hear you're having these side effects.I'm on Olaparib too and the side effects have definitely reduced with time. I find that they seem to come and go to a degree too with some months being worse than others. I know there have been lots of posts about side effects and lots of ladies saying it gets better with time or if they don't settle, with a reduced dose (which is supposed to just as effective I've read).

Oh and drinking lots helps, lots of fluid, sadly not alcohol!

Really hope Olaparib helps you.

All the very best.

Liz.

[ElayneZ in reply to Jacky5]

Hi - are you taking 600mg/day?

[Jacky5 in reply to ElayneZ]

Hi ElaineYes 600mg per day.

Liz

[NIKKibailie in reply to ElayneZ]

Yes I am. X

[NIKKibailie in reply to Jacky5]

Hi Liz. How long did it take for it to have an effect on tumour markers ( if that’s applicable to you?) the cancer is advancing quickly on my liver and it’s a great concern so they may take me off and put me on a clinical trial. It’s only been a month but they can’t mess about with the liver

[Jacky5 in reply to NIKKibailie]

HiI'm sorry to hear that Nikki and can understand your anxiety.

It hasn't really had an effect on my Ca125 but it was within normal limits in the mid 20s after my chemo and op.

I started Olaparib a few weeks later and at one point my level went down to 16 and its been 19 for a while now. So no real change. I've been on it for 16 months now.

May be worth posting the question to see what other ladies say. I have seen comments here from ladies who ve had their levels drop on a Parp.

Really hope you start to see some good results.

Wishing all the very best Nikki.

Liz

[Realistic]

So sorry your having such a hard time, & money shouldn't come into giving someone the correct treatment for their cancer its just so wrong. I dont have any experience with your drug but l do know that sometimes a lower doseseems to be the answer. We just all put up with side effects when we shouldnt, please get the right advice as soon as you can. Take care it takes time for your body to adjust to the treatments whatever they are. love & hugs SheilaFxxx