Peripheral Neuropathy

Hi there. Oxaliplatin is unfortunately known to cause peripheral neuropathy. I had Folfox for 6 months and to this day have partially numb feet. At the time both my hands and feet were affected (I couldn't even type my fingers were so sore). But thankfully my hands improved and are fine, but my feet never recovered. Most important thing is to make your chemo team/Oncologist aware of the neuropathy. They can dose reduce or even change chemo drugs if its too bad. For me, the oncologist was not very attentive and unfortunately dose reduced once damage had been done. From my research and chat to oncologists I understand that while it usually improves when chemo is stopped there is unfortunately no real 'cure' for residual neuropathy - there is some suggestion that acupuncture may help. I had acupuncture at the Royal Marsden, whether it worked or not who knows (impossible to say if my residual neuropathy would have been worse without it). In terms of the ice - Oxalaptin makes one cold sensitive that is why you cannot use a cold cap (for hair loss) for example, I wouldn't think ice would be tolerable and have never heard of it mitigating side effects. But do speak to your oncologist about it. That is the most important thing I've learnt on my 6 year journey - make sure your Oncologist and chemo team fully know what symptoms you having and challenge them on whether any of your symptoms are worrying/need action. Wishing your husband and you all the best!

Thank you so much for taking the time to reply and sharing your experience.  

We will be discussing with oncologist next week. 

Hello Tink44,

Of course it’s OK for you to post, everyone here is very supportive.

I had 5 of 6 recommended courses of FOLFOX in 2021 (the last one was stopped due to other reasons) my dose was cut down to 80% after the first one due to white cell count not recovering. I understand that Oxaliplatin is the main culprit for causing peripheral neuropathy and it is a constituent of FOLFOX.

Below are some of the things I did over the whole period whilst having FOLFOX. I may have been one of the lucky ones anyway (who knows), but I do feel they helped and certainly made me feel better.

I rubbed moisturiser into my hands and feet and continued to massage them for about 10-20 minutes each time, probably about 12+times a day.

Before leaving the house, I would wrap up warm including hat, scarves and gloves.
I’d often carry around a hot water bottle and a hot drink.

I kept myself very warm the whole time, not allowing myself to get cold at all (apart from once*). This involved wearing sheepskin boot slippers all the time except when in bed sleeping.

I didn’t touch anything cold and we put old socks on door handles in the house and towels on the tiles in the bathrooms so I didn’t touch anything cold. I wore gloves if I went into the fridge or freezer for anything and I didn’t eat or drink anything cold.

I spent a lot of time outside resting and breathing fresh air. Even on cold days I’d have my thick slippers on, gloves, hat, hot water bottle and in a sleeping bag with a throw. I always felt much better outside.

*The once was when I didn’t wear gloves when I was outside reading and was not moving my hands very much and didn’t realise how cold they were and that I couldn’t feel anything. It took about 3 days for them to recover and I made sure it never happened again.

Apparently good circulation particularly in the extremities can help mitigate chemo induced peripheral neuropathy by carrying away the toxins from the chemo more quickly.

I’m now 4 years on with no evidence of disease. I don’t have any peripheral neuropathy apart from at the ends of my little fingers occasionally not feeling quite right if I don’t move them much. I do however, feel the cold more so than other people, but this is easy to remedy.

I hope some of this might help your husband and diminish this awful side effect of treatment.

Best wishes

Net77 xx

Hi Net77,

Thank you for this insight. I have actually just bought him a scarf that warms and a coat that warms up too.  He uses gloves for the fridge.  Next on my list now is getting him thicker socks.  

I am very please to hear your on the other side and wish you well   

x

Hi Tink44, I am currently on folfox and have had 6 out of my recommended 12 cycles. 

I have noticed that especially with the latest cycle my hands and feet are more sensitive so will be discussing with my oncologist prior to my next cycle.

There are some fantastic tips from others that I will certainly take on board but I would just say to ensure you talk to the medical team. My team have always told me to be honest with the neuropathy and it's easy to just plough on and ignore it.  I imagine I am at the point where my dose will need reviewing due to my sensitivity.

It's a learning curve for me still as when I started we were in the heat waves so that was a challenge. I now need to cope with the cold so gloves, thick socks, slippers etc are now a must!

Hi Tink44,

I finished 6 months of Folfox in June. I still have neuropathy in my fingertips and feet. It is very slowly improving but at an almost undetectable pace!

1. To mitigate it I have a fleece lined hot water bottle with hand pockets attached which I use sometimes in the evening. I have two devices which are rechargeable and heat up which are small and can be carried around as "hand heaters". They fit nicely inside gloves.

Back in the winter I popped out one day to the shop at the end of our street. I forgot my gloves and had to carry the bottle of milk. By the time I got home I couldn't feel or move my hands at all and couldn't unlock the door to my house. They were stuck in a claw like shape. Luckily my in-laws live on the same street and had the spare key. Didn't make that mistake again! 

Thank you. We have reached out to the consultant and awaiting his reply.   

Thank you. I will Look at the rechargeable hand warmers.  We currently got the throw away ones.  

Hello all Peripheral Neuropathy sufferers,   I have posted several times in the past about this real problem, I was on Capox in mid 23 with much reduced dosage (because of me DPD deficiency) and 8 sessions were cut to 6 because of increasingly intense PN especially in feet, lower legs and finger tips, This is long term in my case and I am still suffering, probably permanently, You learn to live with it with, with a tendency to get more intense through the day. I walk a lot and live life normally and am quite fit otherwise.  I do not know if my permanent PN was due to both drugs in Capox (Capecitabine and Oxaliplatin) and whether the DPDS deficiency (I belive around 6-8% of population have a DPD Deficiency - an important issue).

My comments below are more applicable to long term or permanent neuropathy. The immediate cold sensitivity during tretament is not PN and usually passes after a very short while.

For acute long term or permanent PN, I find it helps and soothes to wear slightly loose socks and 1 size bigger wide fit shoes and slippers. Keeping feet warm helps, particularly in cold weather. Wear loose socks at night in bed. Heat pads in shoes now and again help. Self creaming of feet and lower leg self massage soothes. Occasionally I even use DeeHeat cream! All about distracting the mind to other things. Walk as much as possible and avoid too much sugar. Observe what causes the PN to spike e.g. I suspect that wine does but beer does not??!! I follow a normal diest but still trying to observe in any diet items may cause a spike.

Best wishes to all Neuropathy sufferers. Cheers.   

Anbou.

I have just ordered some from Amazon as been told they are worth getting. I hope they help .