I’ve just finished chemo and am going to be starting on niraparb soon. What are peoples experiences with this drug? What are the side effects like? Has anyone been on it a long time?
I’ve been diagnosed with stage 3c endometoroid adenocarcinoma. It has recurred from 6 years ago. I’ve been told that as it has recurred it is not curable now and only treatable. Struggling to come to terms with everything. I’ve got 2 young children and all I can think of is that at some point I will be leaving them.
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Puffin81
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Sorry you’re having to go through a reoccurrence 6 years after initial diagnosis.I don’t have any experience of Niraparib,I am stage 4 ovarian,finished frontline last October,but was wondering if you have looked at alternatives as well that you could do alongside conventional such as the care oncology clinic? Also have you read Jane mcellands book how to starve cancer.I personally think you need to throw everything at it that you can.I know it’s hard especially with kids,but try to stay positive,you CAN beat this
I am 3c, diagnosed October 17. Been on Niraparib since April 18. No side effects at all, bloods crashed when they put me up to 300, but back to 200 now and bumbling along quite nicely....fingers crossed 🤞 I hope it is successful for you x
Diagnosed 3c last summer. Started niraparib after 6 chemo cycles. First month nauseous and anxious ( permanent state of pre exam nerves). Both were off after about 4 weeks now in month 5 and feeling normal. Hope it works for you.
Hi Puffin. What a shock after so long. I know it’s horrible news, and difficult to deal with, but I would try to disregard what you have been told about the cancer being ‘incurable’. I don’t know if you can beat this cancer, but I’m (serous stage 3) working on the idea that it’s possible - if you believe it’s not, then you’ll almost certainly be right (loads of research showing how important mental and emotional attitudes are).
I agree with Lovedogs. Look up Jane Maclelland. There’s a lot of info on her Facebook pages, although some of it is confusing. I haven’t worked my way through the online course yet, but I’ve already picked up some useful advice. Both the book and the course have complicated bits I struggle with - and I’ve been reading about health for years. And I don’t want to follow all her approach (I’m not comfortable with all the Care Oncology off-label drugs for OC), but there’s a lot you can do to help yourself.
I would also read as much as you can of the information (research referenced) on the canceractive website. Highly recommended. Chris Woollams, who set up this charity with his daughter when she was diagnosed with advanced brain cancer, researches and reports on advances in both conventional medical and complementary approaches. He’s a biochemist by background, so always looks at the scientific research before writing his articles (there’s also a medical board that vets all the info for accuracy). There are videos on particular topics and survivor stories too.
I think I am right in saying that any OC or PPC that has relapsed is considered incurable.. that includes mine and many others on this site. Treatable is the word I hang on to and the Parp inhibitors such as niraparib are some of the most recent treatments. Like you I am apprehensive about side effects but I have learned recently that the protocol is to start on a high dose and reduce until the patient tolerates the dose!
Friends on Parps have described feelings tired, nauseated and with low platelets.
But you get anti sickness meds to mitigate.
I have decided to try them when it’s my turn because I really want what they can do... ie keep you in remission. xx
Thank you for replying. I’ve got a telephone appointment on Friday with my consultant to give consent and I will fine out more about it and when I will start it. Interesting that you say you start on the highest dose.
Hi Puffin81, I have been on niraparib since July of 2020. I started out on 200 mgs. They usually look at your weight when starting. My hemoglobin and other blood went down, so I needed a blood transfusion. I went off for a week or so and then started 100 mgs. I’m doing fairly well on it, but get tired sometimes and neuropathy in my toes. Neuropathy started with chemo infusions, don’t think it will ever go away. I was diagnosed with oc stage 4 in Oct. 2019. Just hoping that this niraparib holds cancer cells back. Hope you do well, Donna
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