Switching Olaparib to Niraparib first line

[AnaJim]

Hi there lovely people,

I would really appreciate your input regarding Niraparib as a first line maintenance treatment after stopping Olaparib because of side effects.

I am very disappointed I had to stop Olaparib after three weeks and a dose reduction (600mg to 450mg) because of developing depressive feelings which made me feel emotionally blunted. After discontinuing the PARP felt better so my oncologist decided to stop it for good and has offered me Niraparib.

Has anybody had a similar experience? What is your take on Niraparib? I am definitely sensitive to drugs effects on the nervous system. I had to ask for a reduced dose of steroids during chemo because of feeling very anxious and having a family history of mental health problems.

It is all so complicated!

Thank you so much for reading my post and I hope you are doing well.

Anax

[SUE7777]

Sorry but I have never been on a parp but would like the opportunity. From what I know all the parps (of which niraparib is one) have different side effects although they target in the same way so I would say well worth trying. All the best Sue xx

[AnaJim in reply to SUE7777]

Hi Sue,

Thank you for replying to my message.

I am coming to the conclusion that there is not a “treatment” but different options and responses from each individual.

I am saddened that my side effects from Olaparib had such an effect on me because of the positive impact is having for so many people. The information I have from Niraparib doesn’t seem so clear if I understood well the data I have been shown.

I hope all goes well for you too! Axx

[SUE7777 in reply to AnaJim]

Your response to Olaparib is not unusual but it is great that you are being offered another parp as many people don't get offered that. I think it's because the side effects are more severe on Olaparib. Good luck X

[AnaJim in reply to SUE7777]

I didn’t know that! My oncologist said it was unusual to feel depressed or numb while on Olaparib. It made me wonder if it was me being over sensitive. I agree with you and I am grateful I have been offered another option.I wish you all the best Sue xx

[thejoannabell]

Everyone responds to medications a bit differently, so I hope the niraparib is better for you. I am currently on 100mg and doing fine. I started out on 300 mg and I was anxious and tearful all the time, along with just about every side effect on the list. I didn’t have much hope that I would be able to tolerate this drug, but 100 mg is quite manageable and last two scans were stable. I hope that your onc is open to adjusting your dose until you find what works best for you. The dose adjustment for me was like the difference between night and day. Wishing you the best!

[AnaJim in reply to thejoannabell]

Thank you for replying to my message!

I am glad reducing to 100 mg is doable and the anxiety is gone. How long were you taking the full dose (300 mg) before you had it reduced? I have issues with anxiety and panic attack already so I fear bringing these on when on medication.

I hope things keep going well for you xxx

[thejoannabell]

I was on it for about 3 months before lowering my dose. During that time I had to take several breaks due to low platelets. I also had issues with anxiety prior to my OC diagnosis, and now I feel like I'm back to my baseline level, which I've (mostly) learned to deal with.

[AnaJim in reply to thejoannabell]

I had problems with platelets during chemo and the oncologist reduced the dose slightly for the last two infusions. Food for thought…Having anxiety makes things over complicated, I am always second guessing myself: “ Is it? or Is it the anxiety?”.

Your messages have been really helpful. Thank you! I wish you all the best xxx

[Pianoplayer731021]

Hi, I have been on Niraparib for almost two years. They lowered my dose from 200 mgs. to 100 mgs. I had a few side effects, but so far the drug must be working. My last scan showed NED, so I am happy that I tried this drug. Sending my best wishes to you, Donna xx

[AnaJim in reply to Pianoplayer731021]

Hi Donna,

Thank you for your message! I am very glad Niraparib is working and you are Ned. Will talk to my oncologist about dose reductions. I wish you all the best xxx

[patricia54053]

Hi I started on olaparib 300mg,after 3 months on it and 3 days in cancer centre they stopped meds, kidney and liver levels to high ,had a break for 4 weeks then started niraparib, 300mg bp started rising and heart racing ,now on 200mg ,very little side effects ,sleep rubbish and skin very dry but ca125 staying under 20😄,

[AnaJim in reply to patricia54053]

Thank you for sharing your experience with me Patricia. I am sorry you had so many problems with Olaparib and it is good to know how other people cope with it. I am so glad Niraparib is working for you, that’s fantastic news!

I am feeling very apprehensive about Niraparib because of the anxiety, insomnia, raised blood pressure…I already have anxiety issues that affect my life, that’s why I am finding it extremely difficult to go ahead despite the data and all the praise for the Parps.

Reading other people experiences really help but I am almost at an state of decision paralysis with the matter…xx

[delia2]

Hi. I have been on Olaparib for over two years at a reduced dose (first 400 then 300 mg). Last winter I became depressed on it but my oncologist gave me a two week break and we had a holiday in the sun and when I started back on it I was fine. From what others say it seems like Olaparib causes more sleepiness and fatigue while Niraparib causes more insomnia and jitteriness. But everyone is different. If I were you I would strongly suggest starting on a lower dose rather than starting high and going down. And it does take several months to adjust to these drugs. What got me through the first six months was seeing the tumor I had left after chemo for recurrence shrinking and disappearing. When they work for you PARPs are amazing. Good luck with Niraparib! Xx

[AnaJim in reply to delia2]

Hi Delia,

Thank you so much for your support with my questions in this post and previous ones. You give me encouragement and reassurances.

I haven’t heard or read about feeling depressed with Olaparib, apparently it is not that common however Sue7777 said it is an usual occurrence. I need to talk to the Oncologist again because I feel sceptical about Niraparib at this stage.

I have had very good response to the treatment so far and haven’t had any signs of disease or raised Ca125 since the surgery. I have felt worse and more hopeless since starting the Parp journey, I feel confused and want to have some zest for life while I am still Ned.

Good luck with your ongoing treat,ent and sending you my best wishes! xx

[Dabrown12]

I was on Zejula(Niraparib) for well over a year with no major issues. I am on 200 mg. I tried 300mg at the beginning, but did get headaches, fatigue, and insomnia. Since being on 200 mg I have only mild side effects , which rarely bother me.

[AnaJim in reply to Dabrown12]

Thank you for sharing your experience with me. I have to make a decision by the end of this week. Best wishes for you! xx