Neuropathy

[Frenchhouse3]

Hi there, does anyone here on Parps suffer from increased neuropathy?

I’ve been fine on mine for 22 months but have noticed my lower calves are feeling a bit numb as well as my toes?

Thanks

Denise

[Pianoplayer731021]

Hi Denise, I have had neuropathy during my chemos and niraparib. My feet always feel half numb and my lower legs feel tingly most of the time. As long as I can feel the floor when walking; then my nurse said I’m alright. If you can’t feel the floor, they worry about you taking a fall. You might want to talk to the nurse about your problem. I’m sure they can help you with something. Good luck, Donna. U.S. xx

[Frenchhouse3 in reply to Pianoplayer731021]

Hi Donna,Thank you so much for replying, it is a relief to know I’m not on my own with these symptoms.

I spoke to my Onc nurse today who contacted my Oncologist. He said that Parps shouldn’t cause neuropathy but I need to keep an eye on things and let him know if they worsen.

I had my third Covid booster only six days ago, so this may have had some bearing, who knows?

I’ve had neuropathy in my toes since chemo two years ago but not in my calves.

I can walk well despite this and it seems to help relieve it a bit.

Take care and thank you again for your support.

Denise xxxxx

[OvacomeSupport Partner My Ovacome Team]

Dear Denise,

Thank you very much for your post. I can see that you have already had a helpful reply from Pianoplayer731021 and I am sure that other members will be along soon to share their experiences. As these are new symptoms for you and have not resolved it is very important that you contact your medical team so that they can give you advice about this. Please don’t hesitate to get in touch with us at Ovacome if we can help with any further information. You can contact us on 0800 008 7054 or by emailing [e-mail] Monday – Friday 10am- 5pm.

Best wishes,

Cathryn

Ovacome Support Services

[Frenchhouse3 in reply to OvacomeSupport]

Thank you Cathryn for your response. I have managed to contact my nurse, who in turn contacted my Oncologist. He thinks the Parps shouldn’t be responsible for the increased neuropathy but has asked me to call again if it doesn’t ease off.

It’s very good to know I can call for additional advice on the number you gave me. It’s very comforting, thank you.

Denise xxxxx

[Cumbrianlass5]

Had some neuropathy during chemo but it has got much worse since I have been on Niraparib. Half my feet feel numb and my legs tingle and jump when I am sitting. Haven't mentioned it to oncologist as I don't want him lowering my dose. My ov cancer is inoperable and Niraparib is doing a wonderful job at holding back its progression. I don't feel at risk of falling and can put up with this if I can hold on to the hope that Niraparib give me x

[OvacomeSupport Partner My Ovacome Team in reply to Cumbrianlass5]

Hi there Cumbrianlass5

I’m really sorry to hear you’ve had increased neuropathic symptoms recently. I understand your concerns about talking with your oncologist, but I urge you to please discuss with a member of your clinical team as soon as possible. This is because changes in sensation such as numbness and tingling can be symptoms of other neurological conditions that need urgent assessment.

Please don’t hesitate to give us a call on 0800 008 7054 if you want to talk anything through.

Best wishes

Annie

Ovacome support

[Frenchhouse3]

Hi Cumbrianlass5,Many thanks for your reply.

It’s reassuring to know other people have similar experiences to mine, though I wish none of us had side effects.

I do think the Parps are great too and so far, I’ve been fine on them and am so happy to hear they are controlling your OC so well.

I hope they keep this dreaded disease at bay and you have many more years of good health.

Lots of love and best wishes

Denise xxxxx

Ps I absolutely love Cumbria, what a beautiful place to live! X

[Cumbrianlass5 in reply to Frenchhouse3]

Many thanks for your reply. Yes I am very lucky to have been born and spent all my life in such a wonderful place. Our front windows look straight out to Blencathra and the back windows up Cross Fell and the Pennines. But there are drawbacks. Our health treatment is a bit inaccessible and hit-and-miss, and there is no public transport here. And, as you can imagine, it is a very wet place to live, which is why it is so green and lovely. The really testing time is when the Helm wind blows for days on end -- straight off the Pennine fells and into our back door!! lol. Take care x

[Frenchhouse3]

Hi Cumbrianlass5,Sounds absolutely wonderful and so peaceful despite the wind howling sometimes.

I can imagine it must be really tricky for medical appointments and the like though.

I haven’t been to Blencathra yet but I must look it up on the map.

I’ve visited Windermere, Grasmere and Lake Coniston in the last year and the scenery takes your breath away. I can’t believe I haven’t visited before!

My Onc nurse is a fan of Cumbria too.

We’re in Bristol which is a great city to live in and great hospitals etc but we don’t have your beautiful scenery.

Take care and thanks for your reply!

Denise xxxxx