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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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
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 ❤️
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....
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.
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 🤞
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.
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