Peripheral neuropathy

[Skyeplus]

Hi everyone, I hope everyone is safe during this awful weather

I have been told in my latest review that I have Stage 1 peripheral neuropathy. Bit of a blow as having read up it means I have to tell DVLA as I shouldn’t drive. All treatments and appointments are an hour away by car, longer by bus. No train service. At present it’s my toes only that are cold. I get severe nerve pain in the days after carboplatin and paclitaxel then it fades. Anyone else had to deal with this.?

Also if you have Peripheral neuropathy what treatment are you having?

my chemo was my last one of six, and I’m not sure what my oncologist is going to say on the 30th Nov, however he did say we would look at future options which I suspect will include more of the same, I.E. carbo and paclitaxel. I’m stage 4a since Aug 2021, with spread to peritoneum and since June progression to liver and spleen.

Was on Niraparib for a year but it stopping working in June 2023. The latest chemo seems to have worked, it’s just left me with Peripheral neuropathy.

Any advice at all?

Skye

[Bistoboy]

I have this after three infusions of carboplatin , my oncologist said it would be too dangerous to continue with the fourth . I can hardly walk and my feet are so painful . Physio coming tomorrow . Good luck

[Skyeplus in reply to Bistoboy]

I wasn’t told it was dangerous. Have had cold toes since first chemo two years ago. It has got dramatically worse these last two sessions of chemo. Now diagnosed as Stage 1 so losing driving license. Last thing I thought would happen!! Am hoping there will be some treatment as I need the chemo. What a double edged sword this is. Good luck to you, take care xxxx

[SopSinger]

Neuropathy from chemo often recovers once chemo stops. Ask your oncologist before you contact the DVLA and make sure it's really necessary. That said, don't risk driving if you don't think your reflexes would be fast enough. You don't want to injure someone else (or indeed yourself). Sending hugs!

[Skyeplus in reply to SopSinger]

Hi thankyou. I have had it come and go for two years but this time he’s actually written it in my review letter so I think I will need to declare it. I’m selling my car, and going to do as you suggest. Hang on before I tell the DVLA.. was hoping there might be some treatment as well. Am looking into B12? With all that we go through fighting this battle I never thought losing my car would be one aspect…daft as I am!! I should have realised. Thankyou xxxxx

[delia2]

Hi. I’ve had peripheral neuropathy since frontline and it got worse after my second round of chemo but I’ve never heard of not being able to drive. I’m in the US. In both cases the neuropathy got less intense within months of finishing chemo. I had acupuncture starting after frontline and all through my second line and after. I think it helped. I wear really comfortable shoes and walk no matter what. A lot of people take gabapentin but I don’t like it. I think B6 is the best vitamin but check with your oncologist.

[Skyeplus in reply to delia2]

Hi in the Uk you are legally obliged to inform the DVLA and cannot drive unless a Dr confirms that you are medically fit. You can be fined and prosecuted and it affects insurance. I’m hoping things will improve as that was the last chemo of this particular session but it has got worse. Thanks for replying. We are all different though. As I say, in the UK it’s a legal requirement to declare it xxxxx

[Ruebacelle]

I've had peripheral neuropathy for years but it's not worse. I drive. I take homeopathic drugs. Granules of phosphorus for eg. Your pharmacist can help you figure this out. Best of luck k from paris

[Skyeplus in reply to Ruebacelle]

I went to speak to a pharmacist yesterday and asked about B vitamins. Long story short I got nowhere. So I am going to ask my oncologist when I have my next review if there is something I can take to help. Many thanks xxxx

[Ruebacelle in reply to Skyeplus]

Homeopathic phosphorus granules ... you can go to the boiton website. They make homeopathic drugs. Good luck.

[Skyeplus in reply to Ruebacelle]

Thankyou xxxx

[OvacomeSupport Partner My Ovacome Team]

Good morning Skyeplus

Thank you for your post. I was sorry to hear that you have been told that you have peripheral neuropathy and what a blow this has been for you. I can see that many forum members have shared their experiences regarding this, which I hope has been helpful.

I just wanted to let you know that Ovacome has an information resource all about chemotherapy induced peripheral neuropathy. This can be found here on our website: ovacome.org.uk/peripheral-n... – Or can be sent to you in the post, free of charge, if you prefer. This includes guidance about managing symptoms and information about driving.

In addition, our most recent magazine had an article on chemotherapy induced peripheral neuropathy which included perspectives of many Ovacome members: ovacome.org.uk/Handlers/Dow... . The article can be found on pages 10 – 11.

I’m sorry that you weren’t able to access any advice from your pharmacist yesterday and I hope that your upcoming appointment with your oncologist can provide some personalised guidance. We are here to support you so please don’t hesitate to contact us if you would like to talk things through or if we can help to plan or prepare for any future conversations with your clinical team. You can message us here on the forum, email [e-mail] or give us a call on 0800 008 7054. We’re here Monday – Friday, 10am – 5pm.

Best wishes

Annie – Ovacome Support

[Saintgermain]

I’m in the states I’m currently in my 1st recurrence same regime as frontline Carbo/taxol I take gabapentin 600 in the evening so far so good

[Skyeplus in reply to Saintgermain]

I will ask about that thankyou xxxxx