PARP inhibitor

[Lizjj]

Hi

Does anyone in here have experience using Olaparib (lynpanza) or any other PARP inhibitor?

[Clar0805]

Yes I’ve been on it about two weeks. I’ve had my dose reduced as I already had a bit of kidney trouble and it’s rough on the kidneys. To start I had some sickness but I’ve switched anti sickness medication and I’ve been fine for the last few days and some tiredness but then I was tired anyway so difficult to tell if this is a side effect from the drug. Clare x

[Lizjj in reply to Clar0805]

Hi Clare..sorry to hear you had kidney problems. How many mg are you now on..X Joy

[Clar0805 in reply to Lizjj]

I am now on 400mg reduced from a full dose of 600mg. My kidney function is improving so that’s the good news . I’m having weekly blood tests and drinking loads of dioralyte drinks with the hope to get me back onto the full dose. In this last week my side effects have been much better. My sickness has just about gone! X

[DanielleRice]

Hi! I've been on Olaparib for two months now as part of a clinical trial. Makes me tired, winded and nauseous. But I'm also taking some ADT inhibitors as part of the trial so it's hard to tell what's worse. They've had to lower my dose because my kidneys are having trouble dealing with the Olaparib (getting high creatinine numbers). And I'm not at all sure if it's having any impact on the cancer yet. Last CA 125 test was flat. But they say that because these are pills and they have to work through the digestive system, it takes longer for them to show an impact. Good luck. And if you want more information, try entering Olaparib in the search engine here and you will see past posts.

[Lizjj in reply to DanielleRice]

Thanks for info Danielle...I will try searching..

[BeeWild]

Hi Liz I was on olaparib from October 2018 until about 5 weeks ago as part of a trial. It did keep things stable tumour wise for me to be honest but I couldn’t tolerate the side effects of nausea, vomiting, fatigue and very low Hb requiring transfusion even with a lowered dose. I therefore started back on chemo last week x

However, I know other ladies who have taken it for years ( Katmal-UK do a search for posts under her username ) with no side effects and good results, we are all individuals and respond uniquely to treatments so please don’t let others experiences put you off as you may be one of the ladies who find it a breeze.

Good luck with your treatment x

Bev xx

[Lizjj in reply to BeeWild]

Thanks Bev especially for the encouraging words, as I've been left feeling like I have to choose between cholera or pest as my oncologist said its my decision, but as I am BRACA 2 positive he would strongly advise it even though I am now clear of all cancer....X

[Maxjor]

I've been on Olaparib since April of 2018. I had side effects the first week, most of which settled down enough to feel pretty normal in daily activities. I take something for my stomach (you can get heartburn/GERD on any PARP), and I have mild fatigue but can exercise as I wish. My numbers are starting to rise but my onc is not convinced yet its not working and we're waiting for scan till April as I was NED 6 weeks ago. I am on tablets--300mg morning and 300mg at night. Others are on capsules--do you know which you will get or have you started?? Wishing you luck if about to start oxoxo Judy

[Lizjj in reply to Maxjor]

Hi Judy..I will be starting on 300 mg daily (tablets)...150 morning and 150 night...Do you know why you are on 300mg twice a day? I didn't realise one could be prescribed with a higher dose than 300 mg daily?

[Maxjor in reply to Lizjj]

600 mg daily (tablets) is “standard” for maintenance on Olaparib. Lower doses work well for some so maybe they’re trying lower dosage first with you.

[Lizjj in reply to Maxjor]

oops made a mistake Judy...its 300mg twice a day...was just confused..I really hope your ca 125 goes down again. I went in on monday to collect my olaparib after having had the ca 125 etc done....I did not ask to hear what my numbers were....WHATS wrong with me?? Just don't want to know...but whats the use of burying my head in the sand?..when do you go for scans in April? GOOD LUCK

[Maxjor in reply to Lizjj]

Glad you found out you are on the full dose, Liz. I admire you for not asking about your ca125. I think that's great. Are you going on as maintenance or treatment? If maintenance, your ca125 must be low anyway and if treatment I have a feeling they will tell you at your next ca125 test. I think most people on them show improvement after the first ca125 (I was at 9 when I started and went to 7 at my first blood test after starting) and eventually to 5 after a couple more.) I don't think you are burying your head in the sand at all. My test is currently scheduled for week of April 15th (I need insurance approval before they can set the date). They are waiting because I got strep pneumonia during my last two ca125 tests and they want it to be gone completely before testing again as that can cause a rise (I just don't think as big a rise as I had but still hoping!) Thank you for remembering! oxoxoxo Judy

[Lizjj in reply to Maxjor]

Hej Judy ..I am on maintenance...and prior to starting c125 was 10. I have never known it to be lower...How I wish it could drop to lower. X

[Lind58]

Can you only go on Olaparib if you are bcra positive?

[Lizjj in reply to Lind58]

Yes...Im only on it because i am Braca positive..X