parp inhibitors

[Tealgirl7]

 is anyone taking a parp inhibitor I'm just wondering about side effects and levels of CA 125 that people are experiencing

[Lyndy2]

It’s really personal Tealgirl7. My side effects have been minimal throughout but friends have had very bad fatigue. My ca125 has crept up, others have levels under 5!

When I was thinking about Parps it was really hard to decide ( I am a real coward about side effects) but I am glad I gave them a go. xx

[Alice77 in reply to Lyndy2]

I have been taking Niraparib since April. The main side effects of insomnia and nausea have started to improve recently but I still have some neutropaenia and tiredness. Worth persevering as it does get better. My CA125 has never been below 15 but seems reasonably stable.

[Tealgirl7 in reply to Alice77]

thankyou.I am new to this

[Katmal-UK]

Ive been on Lynparza (Olaparib) for just under 10 years. CA125 holding below 3.

[Tealgirl7 in reply to Katmal-UK]

that is wonderful.

[Laz66]

Hi, I am on 100 mg Niraparib. No real side effects- some mild insomnia. Low dose as had terrible neutropenia on both chemo cycles. My ca 125 creeping up, now 75 but have had 3 clear ct scans so onc thinks its rising due to inflammatory arthritis, most likely chemo induced🤞🤞🤷‍♀️ X

[Tealgirl7 in reply to Laz66]

 my CA 125 is all over the map. I have been dealing with stage four for almost 17 years. The parp inhibitor is making me very fatigued. I agree that the ca-125 can bounce around for other reasons. I have seen that. Glad to hear you are doing well. How often do you get your CT scans

[Laz66 in reply to Tealgirl7]

Hi, 17 years?? Blimey what a trooper. What dose are you on? Actually I do have an afternoon snooze so that could be Parp fatigue, or my arthritis, or my lag from steroid induced insomnia. Who knows🤷‍♀️

Would you mind me asking what type and braca/HRD status you are? I have been scanned every 3 months this year up until August. I am visible from Mars with all the radiation 😉xx

[Tealgirl7 in reply to Laz66]

 I am on 200 mg of Niraparib. I have only taken it for 3 months and awaiting the results of my first cat scan

[Rosiemd]

I've been on olarparib since Feb'20 with minimal side effects. My CA 125 hovers around 6. I count myself very lucky.