Life with bowel cancer

lofour

Tips of dealing with neuropathy?

My husband was on FOLFOXRI for 3 months and is now on IV 5FU only for the last 1 month. He started to have numbness in his fingers and feet. I think the side effects are building up. Now he has numbness in his fingers up to the second knuckles and in his whole feet.

Do you have any good tips on relieving the symptoms? I will mention to the nurse when we go back for chemo next week and see if his oncologist can prescribe any medication for this.


Thank you everyone that have offered suggestions. This topic has been raised before. After doing my little search, I thought it may be useful to summarise what has been recommended here as well as in other previous posts.

Useful website information
Beating bowel cancer factsheet https://www.beatingbowelcancer.org/wp-content/uploads/2016/03/Peripheral-Neuropathy.pdf
MacMillan general information on peripheral neuropathy https://www.macmillan.org.uk/information-and-support/coping/side-effects-and-symptoms/other-side-effects/peripheral-neuropathy.html#46335

  • Oncologists can prescribe medicines such as amitriptyline, gabapentin, pregabalin or duloxetine


  • Complimentary therapies: reflexology, massage, acupuncture and physiotherapy


  • Exercise that you can do at home (quote from the Beating Bowel Cancer factosheet):
My sister (who is an occupational therapist) gave me a little exercise to do at home, to try to improve the circulation in my feet, and get rid of some of that rogue platinum! You just use little balls, about the size and hardness of a squash ball. Put them on a smooth floor (lino, wood or laminate is good), and roll the balls between your feet and the floor for a while, using little circular motions. Try to include the toes, and make the general trend of your rolling away from the toes and towards the legs. This can also be helpful for hands, in which case, you can roll a ball with one hand, over the other hand. Concentrate especially on the fingers, and roll from the fingers towards the arms, using little circular motions. It made a big difference to me, and reduced the effects of the neuropathy no end.

lofour

@Tiffany thanks for the search tips. I tried to search on the website, no wonder why I did not find relevant posts.

lofour

@Martinp thanks for sharing with me your experience. I hope his numbness is just the lagged effect of the previous block of chemo (which had Oxaliplatin).

lofour

@tigercub thank you. Will try to massage his feet.

tigercub
Quote from @lofour:
@tigercub thank you. Will try to massage his feet.

Hi Lolfour . massage can't do any harm .I've also got a. Very painful foot think it's plantar facilititus have had this before and know can take long time clear .invested in 2 pairs Skechers shoes 2 days ago and wear all time and think there is slight improvement .havnt tried painkillers yet as don't want take any more pills .good luck

kim74

Hi @tigercub I too suffer with neuropathy I use double base gel which you can get on prescription from your GP it helps I to invested in a few pairs of Sketchers with memory foam they have really helped in fact I bought my hubby a pair and he loves them. I also have reflexology once a fortnight which I find good. You have had lots of tips its trial and error, hope he gets some relief soon.
Best wishes
Kim :x::x:

tigercub
Quote from @kim74:
Hi @tigercub I too suffer with neuropathy I use double base gel which you can get on prescription from your GP it helps I to invested in a few pairs of Sketchers with memory foam they have really helped in fact I bought my hubby a pair and he loves them. I also have reflexology once a fortnight which I find good. You have had lots of tips its trial and error, hope he gets some relief soon.
Best wishes
Kim

Hi kim74
Thanks for advice is double base gel same as E45 chemo nurse give me large container of it and soon will probably get more as will be going back on chemo .

kim74

@tigercub I am not sure maybe @Bear G will be able to answer that I know he using double base gel or ask your chemo team next week. :x::x:

Bear G

Hi @tigercub and @kim74
Doublebase Gel and E45 are very different things. Basically my understanding is that E45 is a very good barrier cream in that it provides a covering for the skin, whereas Doublebase Gel is more active and penetrates into the skin more.

I should point out that we may be talking about 2 separate issues in this thread - neuropathy and hand & foot syndrome.

Oxaliplatin can cause neuropathy (also called neuropathic pain). this is caused by damage to the nerves and can disappear when the treatment stops. Sometimes centrally acting painkillers or medicines such as gabapentin or pregabalin can be used which do help.

I believe capcitabine can cause neuropathy but more often causes hand & foot syndrome (also known as plantar / palmar syndrome. This is caused by the drug leeching out of the tiny capillaries. It can be very painful too and is also associated with redness and also dryness and thickening of the skin. This is best treated with moisturisers and emollients.

Hope that helps

Bear
:x::x:

tigercub
Quote from @Bear G:
Hi @tigercub and @kim74
Doublebase Gel and E45 are very different things. Basically my understanding is that E45 is a very good barrier cream in that it provides a covering for the skin, whereas Doublebase Gel is more active and penetrates into the skin more.

I should point out that we may be talking about 2 separate issues in this thread - neuropathy and hand & foot syndrome.

Oxaliplatin can cause neuropathy (also called neuropathic pain). this is caused by damage to the nerves and can disappear when the treatment stops. Sometimes centrally acting painkillers or medicines such as gabapentin or pregabalin can be used which do help.

I believe capcitabine can cause neuropathy but more often causes hand & foot syndrome (also known as plantar / palmar syndrome. This is caused by the drug leeching out of the tiny capillaries. It can be very painful too and is also associated with redness and also dryness and thickening of the skin. This is best treated with moisturisers and emollients.

Hope that helps

Bear

Hi Bear G thanks for info you are a mine of information . will give me some more to think about.things seem be improving slowly but know that I will be going back on chemo so hopefully didn't come back as bad or worse

Polly 1

Should we be able to get moisturisers on prescription? Whenever we ask the oncologist or nurses they say just get Aveeno from the chemist. Hubby has permanent peripheral neuropthy from Folfox in 2013 and uses lots of Aveeno so getting quite expensive.

Same with Cetuximab rash they say just use Pliazon for moisturising.

Bear G

Hi @Polly 1
My GP gives me Doublebase Gel on prescription with no problems. Definitely something to talk to them about.
:x::x:

DianeS

Hi @lofour Bear has given you some great advice and information. I was on Folfox for 6 months but had dosage reductions due to neuropathy. Neuropathy is mainly, numbness, tingling, and difficulty with cold temperatures. I still suffer with numbness in my toes and fingers, but not to the degree I had just after chemo, as the symptoms can get worse before they get better. I did try Gabapentin, but it didn’t agree with me. However reflexology definitely helped, especially in my feet, and massage. I also wore warm socks at all times in the house. Please let your hubby’s oncologist know the degree of suffering as they need to keep their eye on it. Diane :x::x:

Alva

Hi @lofour not sure if someone’s said it already - I find that fingerless gloves provide much relief for my hands. I’ve had neuropathy for 3+ years unfortunately but such gloves are a big help. I’ve got used to people asking me why I’m wearing them even in hot weather(!) but the slight pressure they put on my hands seems to settle the neuropathy a bit.

GD62

Hi @lofour

Prescribing for neuropathy can include amitriptyline, gabapentin, pregabalin or duloxetine and so there is plenty options. Good luck :x:

lofour

Thank you @Bear G for clarifying the differences between neuropathy and hand & foot syndrome.

lofour

@GD62 @Alva @kim74 thank you for your advice and suggestion!

lofour

Thank you @DianeS! I heard of many people recommending reflexology, massage and accupunture. Will definitely give one of these a go.

Polly 1

That's interesting @Alva what type of gloves are they? What type of material?

Alva

Hi @Polly 1 @lofour.
That's interesting @Alva what type of gloves are they? What type of material?[/quote]
I get them from Primark but they tend to stock them only in the winter. I found an online reference to them here
www.hotukdeals.com/...ost-a-five-finger-discount-833236
I did try more expensive ones but found that with daily use, they all end up looking scruffy and it’s impossible to avoid. I also found that skin coloured ones, to try and e more discreet, look filthy after about 5 minutes so I stick to the grey and black ones.
I also get the ones in the men’s department now, as the fingers are longer and they seem to be better.
These ones are a mix of acrylic, polyester and elastonene. They cost £1 for 2 pairs.
As they’re fingerless, they’re quicker to take off when necessary eg when in the bathroom, toilet and kitchen areas. It also means you can do other activities as well with the tips of your fingers. I wear full gloves on top of them when I go out when it’s colder; this means I can function in shops, travelling etc.
Hope that helps - let me know if you want further info.
Good luck!

Polly 1

Thank you for the info @Alva