Post chemo sensitivity

I had Chemo after a piece of colon was removed started in March 2022. Still have horrible cold feeling toes and fingers are still slightly sore. Nipples weren't affected though. Not sure mine will ever change now but no one seems to know. Hope yours gets better though. I heard it can go within a year. 

I have just had my 4th chemo cycle and on the 3rd I got pins and needles in hands toes face nose and mouth, it's a lot better when I am really warm, it seems to last longer with each  session, not had any n nipples yet 

Hi, my chemo has given me permanent neuropathy (I’ve been off chemo for almost a year). Pins and needles are less but the tips of my fingers and thumbs are still ‘numb’. They don’t like the cold either. I was having to wear gloves even in the warmer weather. After some experimenting I have found bamboo cotton gloves work best as my hands don’t tend to get sweaty wearing them. I am now wearing them as inners to winter gloves. Probably have some neuropathy in my feet too but I have an unrelated back problem which affects the feeling in my lower legs.  Can’t say I’ve suffered from sensitive nipples.

On the plus side I was able to tear up some rather hot pizza on Saturday night!

All the best.

Maninbath

Hello GRAHAMTHEGREAT,  You have brought up an issue which is an ongoing  serious problem for me too, and possibly for quite a few others. I have posted about this before some weeks and months ago. Disappointingly, there was no response or suggestions to ease this problem. I would therefore very much appreciate if we could compare notes about this as the weeks and months go by and any tips to help. As I understand neuropathy / peripheral neuropathy can manifest differently for different patients. It should be noted that the leaflet for Capecitabine states that an uncommon side effect can be 'cold limbs and extremities'!! I would love to know if the drug manufacturers or other specialists have any known treatment or recommendations for this grave problem, other than hoping time MIGHT fix it.

Post surgery I had Capox treatment (Oxa and Caoe like you). I completed 6 only of 8 cycles, stopping treatment mid-October, because I was increasingly suffering from a sensation of cold feet, sometimes intensely so, starting from the 2nd cycle. Dreadful and 24/7. It is now 2 months since I stopped treatment but I continue to suffer this awful sensation of cold feet and lower legs, occasionally it seems to creep higher. Also since stopping treatment I have developed a bit more intense neuropathy in my fingers, creeping into the hands and lower arms. I have not experienced sensitive nipples BUT I have felt, on and off, some coldness (neuropathy?) at the tip of my nose, at the end of my penis and inn the anal area. Needless to say, all very worrying but I hope the problem will reduce over the months / years!  Walking a lot and moving about generally may help a little, as well as resting horizontally. I have just completed a 4 session course of acupuncture in the hope that that too will help. Feet vibrators may perhaps help a little. I am now considering trying some form of TENS but will probably end up having to seek help from special medication via a pain control consultant or neurologist

In my case, I was on a much reduced dosage of the drugs because I have a 50% DPD deficiency (not uncommon) and therefore could not tolerate the much higher normal dosage levels,. For example 1st cycle 1000 Cape twice a day, 2nd cycle 1300 Cape twice, 3rd cycle 800 twice etc , and stopped after 6th cycle at average 500 Cape twice a day. These reductions were to try and reduce my awful cold feet syndrome (also in lower legs to some extent.). So far stopping cancer Capox treatment two months ago has not eased the problem. In fact it has got worse and I had been wondering if I was alone with this acute cold neuropathy problem (and some pain in toes and fingers). 

Excuse this long post but I think it is important to give the fuller picture with details which may help others to contribute on thjis issue. I find it tricky however to navigate and find relevant  postings on the MacMillan bowel cancer website. Please let me know how you get on. All the best from Anbou.

Hi Grahamthegreat

I had 12 cycles of FOLFOX chemo from January 2022 to July 2022. The oxaliplatin dose was reduced after cycle 5 and stopped after cycle 9 due to peripheral neuropathy symptoms in my hands and feet.

18months on and my symptoms seem to have stabilised after worsening for around 12 months. My feet are affected more than my hands. I’ve not experienced symptoms anywhere else.

Chemotherapy Induced Peripheral Neuropathy is quite common with oxaliplatin. My GP prescribed  amytriptiline both I’ve stopped taking it as it didn’t seem to have any benefits.

I find that wearing thick socks helps reduce the numbness/tingling in the feet and long walks are beneficial.

Having had no improvement in 18 months I think my neuropathy will be permanent. I am determined that it will not stop me doing what I want. Yes it is annoying but so far the chemo treatment has worked as all the latest tests/scans have been clear, which is the important thing.

Hi Grahamthegreat 

If you feel the pain is nerve pain, you may find the NICE treatment page helpful.

bnf.nice.org.uk/.../

It includes tablet options but also a topical cream option. Maybe worth chatting to your cancer team or GP to see whether it could be worth a try for you.

Hello all re NEUROPATHY - It is some time since the above postings. Has anyone found any new ways for dealing with 24/7 neuropathy (or peripheral neuropathy) ? Following my Capox chemo in 2023, I continue to suffer with varying degrees, mainly in feet, lower legs, fingers with occasional surges to other areas. It may be an impression only but I think warm loose socks and one size up shoes, moving about and walking quite a bit do help some. For the last 2-3 months I have been taking Vitamin B12 daily to see if that can help (allegedly good for the nervous system) and will give it another couple of months to see if that helps. Would really like to hear from the neuropathy sufferes out there with any up to date suggestions and experience. All the best From Anbou.

Hi Anbou

I was prescribed amitriptyline.

But the best thing I did was to have a physiotherapy assessment. I was given advice and an exercise plan that helped. I still have the neuropathy but the physio advice has made it feel more manageable. 

Jane

Hi Jane,

Thanks for your helpful response.

I was also prescribed amitriptyline but have held off taking it, preferriing to try B12 for a while. I certainly appreciate your comment re physiotherapy and will look at that. I had a brief session way back which seemed to help. 

Have you or are you taking amitriptyline?

All the best.  

Anbou

I took the amitriptyline for a while but did not like the side effects so stopped. I did ask about the vitamin b12 at one of my check up appointments and was told it wouldn't hurt to try but unless I had a deficiency, it wouldn't make a lot of difference. I did take it but did not notice a lot of difference. 

With the physio I learnt that anything that gets the blood flowing to the areas affected would help. I have some spiky squeezy balls that I use for my hands. I also do an exercise where I touch each finger to my thumb one by one. When I started I had to look at my hand to do this- now I can do without looking. 

I find hot and cold packs can help when used alternately. Massage also help. I have tried the arthritis compression type gloves (and socks) and find that sometimes these help. 

With my legs -walking helps. And I have exercises that build up the muscles around my lower legs and this is to help stabilise things to help prevent falls etc. The physio said that there was a weakness more on one side than the other. One interesting thing she said was that with neuropathy sometimes there are still some nerve signals getting through but that they are sort of misfiring and getting confused- and its like they have to learn to work together smoothly again so the nerve messages can get through. She said that my neuropathy can not be cured but it can be helped. Certainly seeing her and being listened to and reassured has helped. From the hospital it was just seen as an expected side effect and not much could be done whereas the physiotherapist helped me feel there were things that I could do to help. 

Mine is in my hands and wrists. And lower legs. 

Jane