Coming off Olaparib

[Demelzatheseagull]

Hi all. I'm in a bit of a tailspin as I may need to stop taking Olaparib due to breathlessness side effect. It's taken me back to all those worries about survival rates (I have Stage 4a ovarian cancer). Not sure what I'm asking, just felt the need to post and wondered if anyone else had come off a PARP inhibitor and how you fared.

[Skyeplus]

Hi, I really empathise with you. I am also stage 4A and came off Niraparib last July because it stopped working after a year. A CT scan showed spread to my liver and spleen. My oncologist put my on daily magnesium because it was really low, and carboplatin and paclitaxel. I have my last of six sessions today. Like you I don’t know what’s next but I have a scan in Nov and then a meeting with the oncologist who on the phone said we would discuss future options once he sees the scan results.

Like you I was really worried when I had to come off the maintenance drug and yes I have progression. However my oncologist had/has a plan and I am sure that yours will as well. Try not to think about survival rates. I have stopped reading stuff online, a lot is out of date and things change all the time. I know, I really do know, how hard it is and I too have dark moments, but most of the time I just try enjoy the moment and stay positive.

Take care big hug xxxxx

[Demelzatheseagull in reply to Skyeplus]

Thanks Skyeplus. I really must resist the temptation to Google. Good luck with your scan x

[Alpacalama]

Hi Demelzatheseagull, I too came off Olaparib after taking it for 10 months. I had Bevacizumab along with chemo and went straight onto olaparib when chemo stopped. I was floored all time with fatigue and got breathless putting shoes on, showering the least bit thing. Husband was doing all housework, cooking. I’d be breathless after just peeling a couple of spuds. So it was decided when Bev finished to give body break from olaparib too for month. I tried to restart but only for a week as side effects of headache nausea were too much and Onc thought quality of life more important at this stage as 2 scans showed NED.

That was in March/April. 2023 It was only then Ovacome was mentioned as being helpful in my efforts to return to ‘normal’ life. I started to get answers to things I’d wondered about throughout the whole process, through this chat and enjoyed the webinars about Parps and HRD+ve.

With a more rounded knowledge I worried I should have persevered with PARP but Onc thought I’d probably had enough to do the job and taking them is no guarantee you won’t have a recurrence anyway.

I can see a slow improvement in energy and breathing 6-7months now. I can plan activities such as shopping visiting family and friends. I think we will always have that ‘thing’ at the back of our minds questioning if we are doing all we can to prevent a recurrence.

BTW I’m HGSOC 4b HRD+ve full debulking surgery. Node in chest, surface liver and stomach cancer disappeared after chemo.

I wish you all the best and hope your breathlessness is resolved. Let us know how it goes. Sending love and positive thoughts

P

[Demelzatheseagull in reply to Alpacalama]

Thanks Alpacalama. Like you say, it's the wanting to do everything you can versus quality of life. Take care x

[delia2]

Hi. I had a recurrence eight months after frontline and the chemo was only partly effective. I am somatic BRCA 1 and went on Olaparib for three years. I was pretty miserable on it and my oncologist took me off it last February for quality of life. I now worry more about recurrence but am ned so far. I wish I could stop worrying but that’s the nature of this beast. I hope you have a long time ned!

[FlowerRose]

I was taken off it for fears I was becoming approaching a pre-leukemia state. Leukemia can be a rare side effect of being on it, in my case I was on olaparib 3.5 years. So off I went 2 months ago and naturally am very worried daily. I am noticing reduction in breathlessness, muscle/joint pain too, and I have more energy than I have since this monster reared it's ugly head 12/2019. Only good thing is it looks like the leukemia isn't an issue now, as my blood markers for that are slowly returning to normal. My onc's suggestion was return to more frequent scans, watch for symptoms, and continue taking CA125 tests every 3 weeks when I go for Avastin infusions. I was allowed to stay on Avastin which doc and I agreed was better than nothing. Sigh. Not a perfect answer, sorry!

[Pianoplayer731021]

I was on Niraparib for three years, but it wasn’t always going smoothly. I had UTIs and low blood counts. I stopped this in July, but my blood doesn’t seem to get better. I am now dealing with a hematologist and my oncologist. I recently had an iron infusion to build my iron storage up. All of chemo and parps are great for holding cancer back, but our blood can suffer. Hopefully, my bone marrow isn’t suffering from these drugs. I also had breathlessness all the time from low hemoglobin. Just waiting to see how this infusion works. Sending my best wishes, Donna

[marmay88o]

morning, I have been taking the proper rib for a year and a half now. I have side effects of weakness, headaches, nauseous, and shortness of breath. My shortness of breath had gotten worse, but my oncologist wants me to stay on their opera. Sending you prayers and well wishes. Also, my CA, 125, went up the last nine months from 11 to 59 recently. My oncologist keeps telling me to prepare my body for reoccurrence. It is heart wrenching that I have to fight for my life every day but also blessed that I am aliv.