Information on a relatively new drug ZEJULA or nirapar

Hi Ingrid

Although I'm not a member of this group I noticed that your post had gone unanswered. 

I don't take this drug but if you type 'Niraparib' into the search facility in this group it does bring up a post where it was discussed a few months ago. You could have a read of what the people posting were saying and reply to them if you have any further questions.

Wishing you all the best

x

Thank you for your reply. I have looked up on line, there is so much detail. My request for further information was in the hope that others maybe taking the same drug as me, could share their experiences, of taking this drug re side effects and outcomes, in a discussion forum. Once again thank you for your assistance. Ingrid.

If you type 'Niraparib' into the box that says 'search in group' it brings up a post where it was discussed a few months ago . You could then respond to this person asking them about their experience with this drug.

x

Thank you for directing me to this lady through the group chat forum perineal cancer. I have sent a post to her stating I would be pleased to hear back from her, leaving a short overview of my experience of taking Niraparib. Once again thank you for your assistance .

Ingrid 7474

You're very welcome . I hope she can help you further.

Wishing you all the best

x

I was on Zegulla from August of 2017 to around Sept of 2018 before it stopped working.    Only side effect was mild nausua and some constipation (they all cause constipation).     I am starting chemo again and once it has (hopefully) worked I will ask if I can go back on it as it worked so well for me.

Thank you for your reply to my post re Zegulla. I started this treatment three months ago, so far so good C125 still dropping from 35 to 26. . My main side effects  have been a spasmodic feeling of bladder pressure I a liken it to cystitis. Uncomfortable but not constant. Also very sensitive to sunlight, especially my scalp, although my hair is growing, quite thick now. Any exposure to sunlight makes my scalp tingle like being stung. Not very pleasant, and not an area one can slap on Factor 50. Large sun hat now worn. I too have experienced mild nausea , constipation has not affected me as I have an Ileostomy. A result of my treatments initially which also included a hysterectomy. I’m in my fifth year of treatment and chemo again was not an option, hence this new option. I’m hoping it will halt this cancer for longer than my previous six to seven months. I was cheered to learn how long your Zegulla treatment lasted, and I wish you all the best with your chemo, and I hope that you receive this drug again on completion. It is amazing how quickly new treatments are now being discovered as an alternative to chemo. 

Ingrid

You know now that you mention it in your post the sun did bother me a lot while on Zegulla.   I never felt normal when I was outside.   I always just chalked it up to having cancer.

You are correct about the new stuff all the time.   When I was first diagnosed Zegulla wasn't even FDA approved here in the United States.     Whenever I get depressed about having this type of cancer and the horrible prognosis I remind myself of all the progress being made.

Good luck to you and stay positive, it is all you really can do.

Hi.  I was diagnosed at Stage 3C about eighteen montha ago.  I have since had eight cycles of Carboplatin/Paclitaxel chemo and the nine hour ultra-radical cyto-reduction surgery.  Since April I have been taking two Niraparib (Zejula) tablets a day as a maintenance treatment.  Unfortunately I have had to stop a couple of times because of low neutrophil levels and once because of Covid (despite five vaccinations and shielding!) so it has not been continuous.  The nausea and constipation are manageable but I am finding it really hard to cope with the insomnia and exhaustion.  When I am not taking the drug I feel fine.  Taking the pills, on the four hours or so, interrupted, sleep a night I manage at best I feel wretched and unable to do much the following day.  Normally I sleep really well so it has come as a real shock.  I cannot even catch up during the day.  I am weary but also feel "wired" as though on high-strength caffeine.  Unless I can find a way of being able to sleep despite the Niraparib, or unless this side effect wears off, I think I will have to give up. I understand that everyone responds differently to this drug and many have few or no side effects.  I have also read that after a while the side effects can diminish or disappear, so I will keep taking it for a bit longer, but otherwise I am not convinced that the possibilty this drug offers of a longer gap before the cancer recurs is a good enough trade-off for the adverse effects upon my otherwise very good quality of life at the moment.  I would appreciate any advice on conquering the insomnia please.  I have tried all the usual stuff withut success and have not been offered any options by the oncology team.  There are no recent posts on NIraparib but I hope there are others who can advise me on this.  Thanks.