The Colon Club

My hand and foot syndrome is active again and I’m not sure why. I’m off all chemo including vectibix. This is by far my most painful side affect. Does anyone have a magic remedy for this? No pain meds seem to touch it. I have freezer packs but I can’t keep them on all the time. This is truly an exhausting pain for me. Unrelenting. I can barely sleep. Any ideas?
Cyn

DH used a lotion with Urea...Eucerin or another good name brand works well to soften the skin which seemed to relieve things. Check the ingredient label. He had bad HFS during Xeloda and finally switched back to infusions. I spread lotion on his feet every evening before bed. You could put the lotion on and then cover with aloe socks.

He is on Vectibix now and the Dr. prescribed a gel for his face redness and an antibiotic. Perhaps there's a gel for the feet?

M

I've found that the really painful areas are the ones where it looks like a blister has popped and that tender new skin has no protection. Bandaids on just those parts, it's right where the skin folds on itself in the thumb and forefinger area, help tremendously. It also seems to heal that skin faster.

I use the ice packs when it is unbearable and try to wean myself off after a while. Also, the more I use my hands, the worse they feel. I'm very blessed in that my dear husband has taken over most household chores.

I truly feel for you. My worse day is the day the pump comes off. You would think that yours would clear up after being off chemo for so long.

Maybe a dermatologist can help? Please keep us updated on how you're doing.

I've had HFS so bad in past it's delayed my chemo by a week or two. It lessened slightly when we tried holding ice packs during my 5FU bolus, and off and on for next few days. I also have every lotion under the sun (helps a little with peeling but not much). Unrelated, my oncologist is experimenting with a high-dose pulse steroid treatment on me for first five days of chemo to try to get my platelets up. Side effect ... absolutely no sign of HFS! Not even little red. Unfortunately the steroid is not helping my platelet count, but being able to use my hands and actually walk is amazing. Not sure how my story can help you since you're not even on chemo, but hope you find some relief soon.

mhf1986 wrote:DH used a lotion with Urea...Eucerin or another good name brand works well to soften the skin which seemed to relieve things. Check the ingredient label. He had bad HFS during Xeloda and finally switched back to infusions. I spread lotion on his feet every evening before bed. You could put the lotion on and then cover with aloe socks.

He is on Vectibix now and the Dr. prescribed a gel for his face redness and an antibiotic. Perhaps there's a gel for the feet?

M

I have urea 20 and 40. I also have 10 different lotions, creams, salves and balms! The urea 40 really works to maintain moisture retention and prevents cracking and peeling. My feet look fine but bright pink. They’re puffy and hurt like I’m standing on hot coals. It’s just so unrelenting. I haven’t tried aloe socks...where would I find those? Thanks for the tips.
Cyn

Hi Cyn,

I've seen the socks at Bed Bath Beyond over near the hairdryers and such. Some places call them "spa socks". Amazon calls them moisturizing socks.

M

I had horrible hand/foot syndrome. The only way I got relief was when my oncologist adjusted my dosage. I went from 3000mg for 14 days to 3000mg for 12 days. It really helped. I still had it,but it was doable.

Beckster

Try Vitamin B6 and there are plenty of previous posts to search for more information. It worked for me.
Best,
N

There are several topical creams available through a compounding pharmacy for treating neuropathic pain (relevant for treating painful feet, hands, anal opening).

Compounded creams would be made by local pharmacies that offer compounding services. For neuropathic pain, the creams usually contain a mixture of one or more the following: amitriptyline, ketamine, a NSAID, lidocaine, pre-gabalin/Neurotin, a corticosteroid such as hydrocortisone.

Anyone interested in a compounded topical cream would need to talk with their prescribing MD and optain a prescription. There are options.

My mother has neuropathic pain in her foot due to damage to her perineal nerve during total surgery for a total knee replacement. She has found a fair measure of relief with a compounded cream. She applies a thin layer of cream 2-3 times a day. Wearing a light sock helps with absorption and retention.
Karen

I have found urea cream and petroleum jelly (vaseline) neutralise the xeloda/5fu side effects when used together.