Parp inhibitors

[Cazbird]

Hi everyone. I have seen posts on here about parp inhibitors but cant find any of them. My consultant is talking about putting me on them when I finish chemo. How have others found taking them? X

[Katmal-UK]

Hi. I have been on Olaparib for nearly 7 years (originally as a trial). Doing well, to be honest the,easiest drug I have taken having had chemo and 2 other trial drugs. I hope whatever you are given works well. Kathy. If you have any questions please ask x

[Clifden1 in reply to Katmal-UK]

Hi kamala just going through site for information and i seen your post i am stage 3c I had 4 rounds of carbo/taxol and am 4 weeks after surgery i was told that there was no cancer left when they went in and all samples they took out and tested was negative for cancer they said the chemo did its job just recovering after debulking i then found out I was braca 1 which was quiet a shock they mentioned olaparib but I thought you could only take it for 2 years and I see you have been on it for 7 what are the side effects like on it xx

[Katmal-UK in reply to Clifden1]

Hi, the reason I have been on Olaprib so long is because I was on the Solo2 double blind trial which was a trial for Olaparib to be taken until recurrence. Solo1 was for Olaparib to be taken for 2 years. Solo2 has now been unblended and I continue to receive it on compassionate grounds until recurrence. The side effects for me are minmal . I get bouts of dizziness, some bowel issues, (affected by what I eat). I continue to work full time (albeit at home at the moment) and enjoy a good quality of life. I hope you are given the opportunity to try it. Kathy xx

[Clifden1 in reply to Katmal-UK]

Thanks kathy thats good to know and great that you are still able to have a good quality of live on it you read so many having bad side effects on differant drugs its good to hear when its manageable gives me hope xx

[Caleda4]

Hi, I have been recommended to go onto Rubraca (rucaparib) and finished my chemo 16 October. I had a CT scan last Friday and have an appointment Thursday 19Nov, I am BRCA negative.

I will let you know how I get on. I have read posts to of people taking Niraparib and Olaparib,but not seen any very recently for the latter two drugs.

Sorry I cannot help you more than that,

Take care, and I hope that the rest of your chemo goes well.

[Litchick]

Hello,

My oncologist talked me through the serious possible side effects of Niraparib

before I started them 4 days ago. There is a long list of common ones too.

However so far the only ones I have had include a irregular and rapid heart beat which seems to be settling now. ( I had this occasionally after chemo too)This caused me to be unable to sleep ( I was awake for most of 2 nights) however much better last night. Other than that all fine.

I always think it is important to remember we all react to drugs in different ways . I am BRCA negative.

I am sure your oncologist will talk you through it all first.

Good luck.

Jan.

[Pianoplayer731021 in reply to Litchick]

I’m started Niraparib in July, but had to have a blood transfusion in Sept. My hemoglobin and red cells got so low on this med. I’m taking a break from that now, because my blood is still down. I was on 200 mgs. and this is a powerful drug. Just watching my blood weekly right now. Hope that my body can build up again off this med. Good luck. I am also BRCA negative.

[win_56]

Hi I started Rubraca Wednesday. Brca negative. On the max dose 1200 mg daily. No side affects yet but I guess it's early days. I finished 6 cycles of carbo/caelyx for first recurrence in 3 lymph nodes Infront of lumber. Not NED but they have shrunk about 60 percent so just hoping that Rubraca keeps it Stable. Wish you all the best going forward.x

[mrstadpole]

I started Olaparib at the beginning of June after Chemo.I feel really well on them.No side effects and my Ca 125 last time was 5.I am BRCA 2+.Hope you do well on them.

Ann x

[Jacky5]

I've been on Olaparib since January.

A little tired at times and some tummy grumbles but nothing to complain about. For me a very easy to take drug.

Hope it goes well for you.

L.x

[Frenchhouse3]

I’ve been in them for ten and a half months. A few minor hiccups to start with but otherwise good and so far my CA125 has been stable apart from when I had Covid and it went up a fair bit and then came down to normal again. I would highly recommend them.

Denise xxxxx

[delia2]

Hi. I’ve been on Olaparib since April, reduced dose of 400 mg a day. I had nausea, fatigue, and joint pain for the first few months. Now mostly milder joint pain and occasional fatigue. It shrank my tumor from 8 mm to 2 mm in the first couple of months, so definitely worth it.

[bamboo89]

I;ve been on Niraparib for the last month, but had to stop because of high blood pressure. Am now on blood pressure meds with a view to restarting Niraparib once its come down - but I will need to take BP meds all the time if I go back on the Niraparib.

Side effects otherwise were fatigue and not being able to sleep much, along with a cough and runny nose, bit of a sore mouth and dry eyes. Side effects are different depending which PARP you're on, though you may not get many or any of them.

Miriam

[LochLevenLass]

Hi,

I was swithering about whether to post or not. Have been taking Olaparib since April - six weeks after finishing first line chemo. Have BRCA2 mutation. Continue to be NED & CA125 is stable. Am very grateful to have been given this PARPi. However, am still having problems with side-effects (mainly nausea & fatigue) and have just had dose reduced, so hoping that will sort out the side-effects. I was told that any side-effects usually disappear after taking them for a couple of months & that does seem to be the experience of most of the ladies on here too. I think I have just been a bit unlucky. Am also quite small, so perhaps I just need a smaller dose.

Please don’t let this put you off taking them. The PARPi’s really do seem to be a game-changer in terms of managing this disease. Best of luck xx

[Superkim]

Good morning,

I was on Niraparib for 9 months. It was a very easy drug to tolerate while I was on it. My cancer, however, did return and my treatment regimen changed. But I would definitely give it a try if it's an option.

All the best,

Kim

[Cazbird in reply to Superkim]

Hi, glad you tolerated it well. Hope your new treatment is going well. Is that chemo? Xx

[Superkim in reply to Cazbird]

I was on chemo after the niraparib, but presently I'm on Keytruda. It's an immunotherapy primarily used for lung cancer and melanoma. What can I say, my docs are pretty creative. But I was diagnosed almost 13 years ago, so no complaints.

[Cazbird in reply to Superkim]

Hope it all goes well for you. 13 years that's great. Xxxxxx