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Postby blueskies » Thu Apr 11, 2019 3:35 am

Hi there. I have recently been put on xeloda, an oral form of chemo. I have stage four colon cancer- it reoccured after 4 years, in my lungs and lymph nodes. I was diagnosed late in 2013 and had surgery to remove a large tumor, as well as a hysterectomy, etc. I have a permanent colostomy- bag lady for life. After 3+ years of being in remission', cancer was discovered as reappearing in 2017, while I was trying to have a hip replaced. (radiation damage) I was put on folfox, which I didn't tolerate at all well, then folfiri. Then I had an unfortunate sprain necessitating IV therapy, and therefore a chemo break. When on folfiri I experienced profound fatigue, mouthsores and depression. Now, on xeloda, (after a lovely 10 wk break) I am experiencing foot and toe pain- not like neuropathy but actual red swollen painful areas that make walking uncomfortable. Now my hands are starting in. I have horrible mouth sores that include going down my throat. I have nausea, but not as bad as with IV chemo. I also have lupus, which includes inflammation and joint pain, so I basically feel frequently lousy. Does anyone out there have any input re xeloda? It's new to me- I am open to suggestions for anything that may help. I am using lots of lotion and trying out gloves on hands and feet...(claustrophobia!) I like not having to go into the chemo room for hours and hours, but worry that these side effects will get worse. My Dr is not sure that the xeloda is going to be strong enough to keep my tumor markers down. I am struggling with depression, as I am weary from this battle. It is isolating and feels impossible to describe.

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Joined: Sun Apr 16, 2006 4:09 pm

Re: xeloda

Postby Lee » Thu Apr 11, 2019 1:01 pm

Hi and welcome,

So sorry for all that you are going through. For depression, can your doctor prescribe an anti anxiety or anti depression medicine?

For dry skin, I have found great success with Cetaphil Moisturizing Cream all over my body and Miracle Hand Repair for my hands ( I get Miracle Hand at Bed Bath and Beyond). You can get Cetaphil at Costco or Walgreen's or any pharmacy store.

I have to keep my feet warm with socks and shoes otherwise they feel like I'm walking on rocks.

Can your Onc prescribe a special mouth wash for your mouth sores. It's a special blend that the pharmacy put together.

I always got an egg breakfast sandwich on way to chemo. Keeping small amount of food in stomach kept nausea at bay. Thus snack a lot vs 3 larger meals a day.

If you have not already done so, please get a 2nd opinion at a major cancer research hospital. Where do you live?

Hope this helps, please feel free to vent here anytime you want. Believe me, we really do get what you are going through.

rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Posts: 634
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: xeloda

Postby teachpdx » Thu Apr 11, 2019 1:29 pm

Sounds like Hand and Foot syndrome from Xeloda. I had it really bad. Very different from neuropathy from oxilplatin. My feet got very hot and red like you're talking about.

I would contact your dr re. your symptoms. I had soft cushy (high pile) wool rugs that I could step on for softness. High pile wool socks worked as well - as long as my feet weren't hot. I just used regular lotion to keep feet/hands moist as anything that kept heat in wss uncomfortable.

Best of luck. Feel free to PM me if you'd like.

4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Posts: 417
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: xeloda

Postby Beckster » Thu Apr 11, 2019 1:53 pm

Xeloda has been discussed on this forum...hopefully this will help answer some of your questions...


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)
LN: 0/24
LVI present
Surgical margins: clear
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 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 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D

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Joined: Sat May 23, 2015 10:55 am

Re: xeloda

Postby blueskies » Wed Apr 17, 2019 4:26 pm

Thank you for the input re xeloda side effects! I have gotton a new steroidal mouthwash that is helping the mouthsores a bit.(of course I have magic mouthwash as well ) Unfortunately my feet are getting worse and worse, and my fingertips are now starting to split. I am going to try soaking with Epsom salts, as suggested by my Dr. It seems so trivial to be so upset about my feet, but as I have to use a cane for my hip and back troubles I am having to consider going back to a wheelchair. So depressing! I just hate to give up walking again. My oncologist encouraged me 'not to focus' on my feet...ha ha- easily said, if one doesn't have to walk. I think she feels bad that I have yet another nearly dibilitating side effect. I cracked a joke, but later cried in the car. I am just starting to visit this site- It takes me awhile to figure out computer stuff. I am impressed by the compassion and care shown. I am going to have to consider anti-depressants.

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