Niraparib and peripheral neuropathy

[babs1120]

Hi, I have peritonea serious stage 3c. I have been on Niraparib for 10 months and had very few side effects until I started with muscle pains in my thighs at night. My oncologist asked if I had any pains in my shoulders or arms which I didn't at the time. I now have and noticed that my fingers are tingling now which they haven't since finishing my Chemo last June. Is this a side effect and will they stop the Niraparib when I have been doing so well on it. Has any one any experience of this? thank you.

[Lovedogs41]

I recommend acupuncture,it can work really well for neuropathy.It’s also great for energy levels which I have personally found.I love going for my weekly session x

[babs1120 in reply to Lovedogs41]

Thank you for your reply, I will look for someone local who does it.

[Lovedogs41 in reply to babs1120]

I go to a Chinese acupuncture clinic I have acupuncture and cupping

[babs1120 in reply to Lovedogs41]

Hi, are you allowed to have acupuncture while on Nirapaib?

[Lovedogs41 in reply to babs1120]

yes its absolutely fine its a complimentary therapy. You can have it alongside chemo aswell as it can help with side effects x

[Skyeplus]

Hi, I am also on Niraparib and have been sine June 2022. I have stage 4 grade a serous high grade oc, and have cancer cells in my peritoneum. I have been ok on Niraparib but do have neuropathy in my feet. I also feel a bit sick sometimes. I got a great deal of help from the Specialist nurse. Is there one you can call? I think you need to make them aware of your new side effects. For example it might be that your dosage of Niraparib needs adjusting or they might stop it for a while. I recently had a blood transfusion because my haemoglobin dropped and I was taken off for a few weeks. Am back on it now. Sending a hug x

[babs1120 in reply to Skyeplus]

Hi skye, I will message my oncologist after the Easter Holidays and see what their advice is, I did mention to my Oncologist about the ache in my thighs and she just said see my GP which I have been trying to, all he did was take some bloods to see if I had any inflammation which wasn't the case, I've been trying to get another appointment for a week now with out success. My bloods are all coming back fine. I am sorry you had to have a transfusion and hope you are feeling better now. I was wondering if my symptoms had anything to do with having spent 3 days in hospital at the New year with Covid and getting Sepsis. Well I will contact my oncologist. Thank you for replying let me know how you get on now you have restarted it x

[Trickysite]

I have found my peripheral neuropathy has become slowly worse since I started Olaparib Jan. a year ago. My symptoms are numb finger tips but more importantly poor balance resulting from loss of precise control when moving my legs to Walk. I now need to use a walking stick all the time whereas before it was only occasionally. My legs feel very heavy. Prior to chemo, I had none of these symptoms. But Olaparib is working great on cancer! I am on 400 mg a day so don’t want to go lower. I will ask about acupuncture and physio at my next consultation but would be grateful for any advice from you lovely ladies.

[MacButton in reply to Trickysite]

I was interested to see your post, I have similar symptoms following taking Niraparib, already have peripheral neuropathy from the chemotherapy. My legs have got much weaker with lack of control of my legs and poor balance since starting the Niraparib 3 years ago as one of the first to be prescribed it, My dose was reduced twice early on because of painful legs and I am now taking 100 mg daily which so far has kept the cancer stable. I have asked several times if the weakness of my legs is a side effect but have been told that there is no reporting of it being a side effect. I also need to use a walking stick.

[babs1120 in reply to MacButton]

Thank you for your reply, I am on 200 mg and had my last 2 rounds of Chemo reduced to 80% due to Peripheral neuropathy in my feet, I felt I was walking on glass. I did have a bit of tingling in my fingers but all of it went when I finished the Chemo, I find I am worse at night, going up stairs to bed is the worst, before the chemo I could run up the stairs and even take two at a time but now it is an effort to climb them. I don't need a walking stick as I can manage walking its just going up stairs and lying in bed with ache in my thighs (feet are fine) and tingling fingers.

[OvacomeSupport Partner My Ovacome Team]

Hi there babs1120

Thank you for your post. I’m sorry to hear that you have noticed some tingling in your fingers. I can see that you’ve had some replies from the forum community which I hope have been helpful.

As Skyeplus mentions above, it’s really important to mention this change to a member of your clinical team so that they can provide you with personalised advice. We would be happy to help plan or prepare for any future conversations, if you think this could be useful? Tingling in the hands can be associated with peripheral neuropathy but this isn’t one of the side effects of niraparib that Macmillan or Cancer Research UK list on their information about niraparib below:

- macmillan.org.uk/cancer-inf...

- cancerresearchuk.org/about-...

We do have an information resource about peripheral neuropathy that can be found here on our website: ovacome.org.uk/peripheral-n... - or we can post this to you, free of charge, if you prefer? This outlines the causes of peripheral neuropathy and explores some ways to manage symptoms, including acupunture.

I can see that some members have shared their positive experiences of acupuncture with you. To learn more about how acupuncture may be able help with the side effects of cancer treatment, the below resources may be of interest:

- ovacome.org.uk/complementar... - There is a section in our complementary therapies booklet dedicated to acupuncture.

- cancerresearchuk.org/about-...

As niraparib can increase risk of infection, it’s important to talk to your clinical nurse specialist or member of your medical team about the safety of acupuncture for your individual circumstances. In addition, the British Medical Acupuncure society have a search tool to help patients find a reputable practitioner, which is available through this link: medical-acupuncture.co.uk/.

I hope that this information is helpful and that a conversation with your clinical nurse specialist or oncologist provides some personalised guidance regarding the tingling in your fingers. Please don't hesitate to get in touch with us if you have any questions or if there's anything we may be able to help with. You can message us directly through this forum, email us via [e-mail] or call our support line on 0800 008 7054. We're here Monday - Friday, 10am - 5pm.

Best wishes

Annie - Ovacome Support

[babs1120 in reply to OvacomeSupport]

Thank you for the information you shared I will download it.

[babs1120 in reply to babs1120]

I have found an acupuncture therapist in the next town thanks to your link

[Lovedogs41 in reply to babs1120]

that’s great,it can take a few sessions before you feel a difference so stick with it!

[Tealgirl7]

I have been on Niraparib for the same time.Try some exercise. I feel so much better when I am active. I have periods of being inactive and. I noticed more backaches.

[babs1120 in reply to Tealgirl7]

Hi, I don't have any back ache but I do loads of exercise, I have been digging plants out of my garden with a spade for weeks, trying to make it easier to manage, I also go walking and looking after 2 grandchildren age 3 and 6, I don't have any aches until night time. Thank you for your reply

[Tealgirl7]

How often do you get your blood checks done.Sometimea there is something off that can cause this.

[babs1120 in reply to Tealgirl7]

I get my bloods done every month and they are all normal,

[Alice77]

I have been taking 200mg Niraparib daily for the last year. I already had some peripheral neuropathy from my Carboplatin and Paclitaxel chemo with three numb toes on each foot. It hasn't got any better but I don't think Niraparib has made it worse.

[babs1120 in reply to Alice77]

Hi Alice, thank you for your reply,, I am on 200mg daily as well, I did Google the side effects and it doesn't mention Peripheral neuropathy which is why I posted to see if any one else has the same symptoms .

[Hannah54]

hi, I have been on Niraparib for two months and have also had aching legs, the neuropathy from the Paclitaxel and Carboplatin have stayed the same, however I know have headaches which have been quite uncomfortable the last few days, have been told to stop the tablets till after Easter, my blood pressure has been a bit up and down, I’m very grateful to have the Niraparib so hope I don’t have to come off them for good. Has anyone had headache from them like this?

[babs1120 in reply to Hannah54]

Hi, I had a few headache's the first month but found drinking loads of water helped it settled down after that, they say you have to let your body get used to it. I am also bothered in case I have to come of it. Hope it settles down for you after easter. x