Hi all my mum has just started Niraparib she has been in them two weeks since starting them she cannot sleep at night and she is really fatigued I know that these are side effects from the medication but wondered if anybody new any ideas how to manage them.
Sending you all best wishes
Love Ali xxxx
Hi, I take mine in the morning and most nights now I sleep well. I don’t know if mum is having any other side effects? As I wasn’t my onc was happy for me to change. I THINK the reason for the night time suggestion is that any nausea etc would be less?
Maybe give her nurse a ring, and wish her well from me. Happy to help if I can xx
Thanks very much for replying she feels very fatigued just hoping that they will settle down she has only been on them for nearly two weeks glad you are ok on them have you been in them for a while? Can I ask what dosage you are on I think mum takes 3 each day many thanks. Just noticed dog lover we also love them we have a golden retriever each do you have any?
Kind regards Ali x
Hi Ali, I’m also Ali!!
I take 200mg, they did put me up to 300 last summer but my bloods crashed and I had to have an infusion, so put back on 200.
That’s the only problem I have had with them and I have been on them a year next month 😊
I would keep an eye on the fatigue and call mums nurse, but if she not sleeping that won’t be helping so maybe taking them in the morning would help her?
I have a big black Labrador called Milo, who is currently having a bath due to ‘swamp’ diving on our walk this morning 😳
Keep safe and I hope mum settles soon xx
😂my one loves going in the muddy water too thanks again for your kind help take care xx
Hi. I've been on Niraparib since October 2017. I take 300mg a day. I have found sleeping is affected by the medication, but I've made a conscious decision not to let it bother me, as worrying about sleeping makes it all the harder to sleep. I mostly sleep for 2 hours at a time, with about 6 hours sleep in total per night. In the early stages I kept a journal, which I would write in when I couldn't sleep, and have started again now I'm in Covid-19 isolation, and I write down my feelings, fears and anxieties - it seems to clear them from my head. I often find I get really tired around 5pm and if I need to, I have a 20-30 min nap.
I rehomed a little dog to give me a reason to get out and walking and joined a cancer rehab gym, and was going to classes twice a week - exercise helps reduce fatigue. Very much missing the dog walking and gym, but starting online exercise classes this week. I also tried reflexology - something else that's on hold, but I always slept well after a treatment. My reflexologist gave me some hand reflexology movements I can do myself at home - you can probably find them online. This Works pillow sprays help with relaxation. I've always taken my medication at night as per the drug company recommendation, but when I had to have a 2-week break last summer, my sleeping habits didn't change.
2 weeks is very early stages, and it takes 2 months or so for your body to adjust to Niraparib - that's why blood tests are so frequent at first. I didn't have any problems with nausea after the first few months, and can't remember when I last had to take anti-sickness medication. Everyone is different, and will react differently, but anything you can do to reduce your's and your mum's anxiety will help. Hope the drug works as well for her as it has for me - and keep providing the wonderful support you are giving. x
Hi Ali,
Sorry to hear your mum is struggling. First off, do you know what dose of Niraparib she is on? I think I read below that she takes 3 tablets a day? If that is the case, she might be on 300mg, which is a very large dose.
I started off on 300mg and really struggled with side effects, in and out of hospital and then they dropped it to 200. It was similar but less.
Now I am on 100 mg (1 tablet a day) and I feel way better than I did on the larger dose.
They might start her on the maximum and see how she goes.
The fatigue will lessen if on a lower dose. I'm not fully where I was before, but I am doing sport, walking, riding my horse, diving etc.
There are many complementary therapies that will help a bit, as does exercise.
The insomnia has remained the same. Meditation has help me. Propanolol might help her too (I take it as a study was done a while back that is also helps with Ovarian Cancer Survival (lowering Cortisol). She could speak to her GP about that.
I take tablets that help me sleep. Between my GP and I trying different things, it became the lesser of 2 evils!
I hope that helps a bit...do PM if you need to chat, I am very happy to talk with anyone xxx
Much love xx Nicky
Hi Nicky thanks for all the usual information I remember speaking to you when mums cancer had come back and you recommended Dr Krell . I’m glad that your doing ok and managing to horse ride. They put mum on 300 mg she has spoken with her nurse and they said have two days break then restart on 200. I haven’t heard of propanolol I will look it up.
Keep safe
Love Ali xxx
Hi Ali, that is great news. I think it has really helped me. It is a beta-blocker, so would be 'off label' for a GP. But if you show them a research paper, and have a a good chat, they might be able to help. The results show it helps significantly. Good luck! xx
Hi Nicky I did have a look and as I understand it reduces cortisol/ so due to that it doesn’t feed the cancer is that right? really appreciate your help.
Love Ali xx
Hi Ali, it lowers Cortisol. The theory is that stress causes/enables the cancer. There are loads of studies, but here is an example of how it helps. researchgate.net/publicatio...
Hello Aliollie,
I have been a chronically bad sleeper for years (a nurse who did lots of night shifts) and would often only get 3-4 hrs sleep. I've been on Mirtazapine 3.75mgs (a quarter of a 15mg tablet) since diagnosis of OC. Its been wonderful for me and I wish I'd started on it years ago. Mirtazapine is actually an anti-anxiety drug but if taken in a very small dose it works well for insomnia. Tell your mum to ask her GP to prescribe her something as lack of sleep is probably the last thing she needs. Take care, sticky3006 x
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