Hand Foot Syndrome

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TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Hand Foot Syndrome

Postby TinaFish » Thu Aug 29, 2019 5:02 am

Sorry because I'm sure this has been discussed, but I couldn't find any old threads with this title.

So I had a 5FU infusion in the hospital back in mid-June; after that, I've been taking oral Xeloda (Capecitabine). It seemed like things were going fine, but about a week ago, I noticed something strange on the BACK of my hand!

Let me explain: I'm an artist (and I also do my own acrylic nails) and I probably use glue (including krazy glue) more than the average person. About a week ago, I looked at my right hand and noticed that there was (what I thought was) dried up krazy glue on the first knuckle, on the 2nd knuckle, and also a little smear (really does look like a smear, about 1/2" long) nearby my wrist. I wish I could take a photo to show you guys, but I'm writing from my phone, and I only see the option to embed an image that's already uploaded to a server. I don't have FTP access from my phone- does anybody??

Anyway, it *looks* like the glue spilled on these areas and dried while my hand was flat (not clenched into a fist). Please bear with me while I explain. So imagine you put some krazy glue on your knuckle while your hand is laid flat on a table. Allow the glue to dry completely. After that, make a fist. The glue will split and crack when it has to stretch around your knuckle. Therefore, areas of skin on your knuckle that are normally hidden while your hand is flat, will now be exposed. And these areas will look totally normal, and not have any glue on them.

That's exactly what my knuckles look like. And to make everything more prominent, it looks like the dried glue has attracted some dirt. That's the only reason why it even got my attention. The skin is dark in those areas. No itching, no pain, and once I discovered it, I just left it alone because I'm kind of accustomed to having glue/paint/whatever on my hands. It just comes off on its own - no need to irritate my skin or hurt myself trying to peel it off.

I googled hand-foot syndrome, and it's described as being on the palms of hands and soles of feet. It also mentions that moisturization of the skin is necessary as a preventative. I live in Los Angeles. We really don't get dry skin here. No need for lotion/cream when you get out of the shower. So I thought that the moisturization requirement didn't really apply to me.

This "stuff" on my hand hasn't been bothering me at all, other than the fact that it's kind of unsightly. I went in for chemo today, however, and another oncologist (not mine) said that it's hand/foot syndrome! But it doesn't fit the descriptions of what I'm reading on the internet! I'm scared to try to peel it off. I could injure myself and make it worse. Please give your feedback! I put Palmer's Cocoa Butter Formula on my hands and feet tonight. I love how it smells like chocolate.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Beckster
Posts: 390
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Hand Foot Syndrome

Postby Beckster » Thu Aug 29, 2019 5:30 am

Xeloda has been discussed on this forum...hopefully this will help answer some of your questions... I was on it for 6 months and developed H/F after the 3rd cycle. Dark hands and feet, sore and peeling skin. Xeloda dries out the skin and the saliva in your mouth. You need to buy a cream with Urea. "A study has found that a 10% urea cream helps prevent hand-foot syndrome better than a new antioxidant ointment called Mapisal in people who’ve been treated with the chemotherapy medicine Xeloda (chemical name: capecitabine). " If it gets really bad, your onc can adjust the dosage. Lather it on before you go to bed and cover your hands and feet with a thin sock or gloves....

viewtopic.php?f=1&t=61932&p=490814&hilit=Xeloda#p490814
viewtopic.php?f=1&t=62209&p=490924&hilit=Xeloda#p490924
viewtopic.php?f=1&t=61932&p=490295&hilit=Xeloda#p490295
57/F
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 (path) 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
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 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 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17 :D


User avatar
Jacques
Posts: 518
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Hand Foot Syndrome

Postby Jacques » Thu Aug 29, 2019 7:02 am

TinaFish wrote:... Iwish I could take a photo to show you guys, but I'm writing from my phone, and I only see the option to embed an image that's already uploaded to a server. I don't have FTP access from my phone- does anybody??
....

You don't need FTP access. All you need is Internet access.

Just log in to https://www.imgbb.com and follow instructions for uploading an image from your phone, and for getting the direct link of this image for use on this board.

Pyro
Posts: 294
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Hand Foot Syndrome

Postby Pyro » Thu Aug 29, 2019 7:03 am

I’ve been on those drugs for years but never developed H&F thankfully but Keep the super glue handy if you ever go on erbitux or vectibux. The oncologist can fiddle with your dose if it gets worse, remember to show them.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

MeAndMine
Posts: 114
Joined: Mon Aug 05, 2019 2:40 pm

Re: Hand Foot Syndrome

Postby MeAndMine » Thu Aug 29, 2019 7:24 am

I was just asking about this, Tina. I don't have any suggestions for you as you are farther along in treatment than I am. I meet with the radiation doctor next week to get started on the preliminary work up so I'm still weeks away.

My oncologist just said to use lotion like normal & recommended two different brands. He said there are two that he likes. One is Udder Cream. I googled it & realized I had seen it before in the store. It's a white container with black spots like a dairy cow. It's called Udderly Smooth hand cream. The other he recommended, is in a green container called O'Keeffe's Working Hands. When I looked that up, I saw they also have a blue container that says "healthy feet" and a lip balm, too. I don't know anything about any of those but thought I'd pass on the brands he talked about.

Maybe a boost in your water or sports drink would help, too? I'm not sure about that but seems like it couldn't hurt.

I don't think I'd try to peel it off. It might peel off into a raw spot that could get infected & that would hurt worse. I wish I knew more to help you. Feel better, my friend.
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: Hand Foot Syndrome

Postby NHMike » Thu Aug 29, 2019 12:21 pm

Xeloda can cause discoloration, usually darkening of the skin. I don't think that this is under the category of Hand and Feet.

I had this on my top parts of my feet and the backs of my hands. It went away some time after treatment.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
ginabeewell
Posts: 313
Joined: Wed Oct 24, 2018 10:30 am

Re: Hand Foot Syndrome

Postby ginabeewell » Thu Aug 29, 2019 7:03 pm

For ultra moisturizing, the best I’ve found is Aquafor slathered on under socks or gloves while you sleep. This helped me with Vectibix side effects (splitting skin, etc).

Chemo itself is wildly dehydrating so I think safe to assume you’ll need to start using cream even if you haven’t had to in the past. I like both Cerave cream and Weleda Skin Food for daytime use.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

zephyr
Posts: 250
Joined: Thu Aug 18, 2016 7:31 am

Re: Hand Foot Syndrome

Postby zephyr » Thu Aug 29, 2019 7:07 pm

Henna will do the trick. Please feel free to PM me if you want directions.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 Follow up colonoscopies, all clear
Jun-2016 CRC found during routine follow up colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany) on both lungs, 11 nodules (9 mets) removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr/Jul-2019 Xeloda/Avastin, SBRT
Sept-2019 Stable! Continue Xeloda/Avastin

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Hand Foot Syndrome

Postby TinaFish » Thu Aug 29, 2019 10:44 pm

zephyr wrote:Henna will do the trick. Please feel free to PM me if you want directions.


Really? But then my hands will be discolored by the henna, right?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Hand Foot Syndrome

Postby TinaFish » Thu Aug 29, 2019 10:45 pm

Jacques wrote:
TinaFish wrote:... Iwish I could take a photo to show you guys, but I'm writing from my phone, and I only see the option to embed an image that's already uploaded to a server. I don't have FTP access from my phone- does anybody??
....

You don't need FTP access. All you need is Internet access.

Just log in to https://www.imgbb.com and follow instructions for uploading an image from your phone, and for getting the direct link of this image for use on this board.


Thank you! Jacques to the rescue again :)
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Hand Foot Syndrome

Postby TinaFish » Thu Aug 29, 2019 10:50 pm

Ok, the "smear" on my wrist, and the weird skin on my knuckles, respectively:

https://ibb.co/Hx6pFqZ
https://ibb.co/2ZzxYQ9

Please ignore the little two-line scratch nearby my thumb - that's just a little injury.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Hand Foot Syndrome

Postby TinaFish » Fri Aug 30, 2019 3:52 pm

Bumping, sorry. Please see the pics in my previous reply?? I'd really like some feedback
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Beckster
Posts: 390
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Hand Foot Syndrome

Postby Beckster » Fri Aug 30, 2019 4:59 pm

TinaFish wrote:Bumping, sorry. Please see the pics in my previous reply?? I'd really like some feedback


To me, it looks like darkening of your skin from Xeloda...here is a picture of the bottom of my foot after the 3rd cycle

https://ibb.co/vsWjS70
57/F
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 (path) 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
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18 6/19 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 3/19 3.1 6/19 3.1 9/19 2.6
Clear Colonoscopy 10/17 :D

NHMike
Posts: 2264
Joined: Fri Jul 21, 2017 3:43 am

Re: Hand Foot Syndrome

Postby NHMike » Fri Aug 30, 2019 5:23 pm

Beckster wrote:
TinaFish wrote:Bumping, sorry. Please see the pics in my previous reply?? I'd really like some feedback


To me, it looks like darkening of your skin from Xeloda...here is a picture of the bottom of my foot after the 3rd cycle

https://ibb.co/vsWjS70


I concur. I had that and it went away several months afterwards. I only had it on Adjuvant Chemo, though, not Neo-Adjuvant.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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