Niraparib ( Zejula) with an ileostomy - My Ovacome

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Niraparib ( Zejula) with an ileostomy

Lookingahead profile image
7 Replies

hi everyone , is anyone with an ileostomy taking Niraparib ( Zejula) ? I took Rucaparib but lost so much fluid through the stoma that there was very little padding through the kidneys and it caused kidney problems. I may now take Niraparib . Just wondering if anyone has experience with an ileostomy and taking Niraparib ? Have you been ok with this ?

😊❤️

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Lookingahead
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7 Replies
Realistic profile image
Realistic

Sorry l have no experience in your treatment, l had carbo & Taxol but l hope it works for you.Im sure our fellow Teal sisters will give you their experiences. Please god it works for you

stay well keep positive . Sending love & hugs SheilaFxxx

Lookingahead profile image
Lookingahead in reply to Realistic

thank you so much — I’ve been through almost everything now but never been NED! I’ve been referred to the Royal Marsden for a clinical trial so my next general question will be to the group asking if anyone has taken part in a phase 1 trial !! Because I’m fit and well , I’ve been offered a phase 1 trial —- but rather unsure!!! Sending love and hugs back ❤️

Gartenfee profile image
Gartenfee

Hi. I got Olaparib , have'nt had this problem although I have a ileostomy myself. What helps me ist chocolate, bananas and White bread - chewing slowly.....Wish you good luck and that it helps you....

Lookingahead profile image
Lookingahead in reply to Gartenfee

thank you so much for your positive feedback and tips ❤️❤️

Numi profile image
Numi

i have a colostomy and took Niraparib for three and a half years. I just had to be careful to drink enough - I used ORS tablets in water, but unless I got dehydrated I didn’t have any issues. Constipation rather than the opposite, was the risk for me with this drug. I appreciate an ileostomy has much higher output, so my experience may be different to yours.

Tulips66 profile image
Tulips66

I am only starting Niraparib in a few weeks time & I also have a stoma so cant help with your query yet. I am a bit anxious myself about what the side effects will be but I am hoping they will be minimal. I will let you know how it goes & hopefully you will tolerate it better than the Rucaparib 🤞

Dales-Rambler profile image
Dales-Rambler

Hi

Sorry to hear this. I've been taking Rucaparib for about 12 months with a reducing kidney function and a colostomy, but never had kidney problems when I took Niraparib. I only stopped that and was transferred onto Rucaparib because of fatigue, but to be honest, for me the fatigue is about the same with both.

Hope you manage to tolerate Niraparib.

Best wiahes

Sally

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