Hand and foot syndrome

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RulaLenska
Posts: 24
Joined: Fri May 04, 2018 8:13 pm

Hand and foot syndrome

Postby RulaLenska » Mon Jun 04, 2018 7:07 pm

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
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Hand and foot syndrome

Postby mhf1986 » Mon Jun 04, 2018 7:27 pm

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
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Hand and foot syndrome

Postby Robino1 » Mon Jun 04, 2018 7:35 pm

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. :cry:

Maybe a dermatologist can help? Please keep us updated on how you're doing.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

DebZ
Posts: 83
Joined: Fri Nov 14, 2014 9:01 pm
Facebook Username: Bulc

Re: Hand and foot syndrome

Postby DebZ » Mon Jun 04, 2018 9:20 pm

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.
48 @ diagnosis Sept 2014
MSS; Kras mutant G12D
Oct 2014: right hemicolectomy
Dec 2014-May 2015: Folfox
June 2015: clean scans
Sept 2015: scans reveal ovarian mass and liver met; Folfiri
Jan 2016: liver wedge resection and hysterectomy
April 2016: multiple lung mets; Folfiri+Avastin
June 2017: lung mets growing; switch to Folfox+Avastin
Jan-April 2018: dropped oxali; CEA rising
May 2018: back on Folfox+Avastin, add pulse steroid treatment to get platelet count up (continuously in 50s)

RulaLenska
Posts: 24
Joined: Fri May 04, 2018 8:13 pm

Re: Hand and foot syndrome

Postby RulaLenska » Mon Jun 04, 2018 10:35 pm

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
Dx 8/16 IV stage with mets to lungs liver adrenals
KRAS wt MSS CEA over 400
2 x folfori caused refractory diarrhea but dropped CEA to 200
Switched to folfox stopped after 10 due to neuropathy
Avastin leucorvorin 5fu dropped after 11 due to hfs
Chemo break to travel.
Nov. 2017 emergency sleeve colectomy of primary tumor.
Vectibix irinotecan
PET scan shows no lung or adrenal tumors
5/2 Portal Vein Embolisation in preparation for liver resection.
6/12 extended right resection removing 60%.

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Hand and foot syndrome

Postby mhf1986 » Tue Jun 05, 2018 2:08 pm

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
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

Beckster
Posts: 289
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Hand and foot syndrome

Postby Beckster » Tue Jun 05, 2018 3:47 pm

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
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/18 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5
Clear Colonoscopy 10/17 :D

NedPlease
Posts: 538
Joined: Fri Mar 23, 2012 3:56 pm

Re: Hand and foot syndrome

Postby NedPlease » Wed Jun 13, 2018 10:23 pm

Try Vitamin B6 and there are plenty of previous posts to search for more information. It worked for me.
Best,
N
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
Today- NED

MissMolly
Posts: 572
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Hand and foot syndrome

Postby MissMolly » Thu Jun 14, 2018 12:34 am

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

User avatar
Sophy
Posts: 250
Joined: Fri May 27, 2011 2:46 am
Location: New Zealand

Re: Hand and foot syndrome

Postby Sophy » Thu Jun 14, 2018 4:28 am

I have found urea cream and petroleum jelly (vaseline) neutralise the xeloda/5fu side effects when used together.
dx T3N1M0 Feb 11 when children age 11, 7 and 2
Xeloda/rad March 11, LAR June 11 temp ileo
Xelox 6 rounds, NED
Lung mets Oct 13
Laser surgery Germany Jan 14. 3 mets left lung.
Laser surgery UK Jun and Aug 14 one met each lung, NED
Aug 14 Started Xeloda and Celebrex (ADAPT)
Oct 2018 CT shows still NED
Continuing ADAPT


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