questions for those on Xeloda

Please feel free to read, share your thoughts, your stories and connect with others!
skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

questions for those on Xeloda

Postby skypup » Wed Feb 04, 2015 4:31 pm

I've just started it and am wondering what to expect.

What is your schedule?
How long have you been taking it?
What is your dosage?
How do you feel?

Thanks in advance!

User avatar
juliekei
Posts: 97
Joined: Sun Oct 30, 2011 8:33 pm

Re: questions for those on Xeloda

Postby juliekei » Wed Feb 04, 2015 4:35 pm

I take 2 pills twice a day for two weeks and then a week break.
I also do AVASTIN once a week.
I have been on this regimen for almost 18 months and it has been wonderful for me. No Hand and Foot issues. My hands are dry so I moisutrize regularly. I have had some joint pain so I take Alleve every day but overall it has given me more time with my family.
I hope that it works well for you...
Dx Stage 4 8/10 age 38 (mom of 2)
LH 9/10
5FU/Folfox
SBO surgery 8/11
HIPEC#1 6/12
8 rounds of FOLFIRI
HIPEC#2 5/13
VATS for 3 lung nodules 1/14
Xeloda & Avastin
SBRT 8/14
Fistula 4/15
Radiation to pelvic tumor 7/15
Liver/Peri mets 11/15

User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: questions for those on Xeloda

Postby BrownBagger » Wed Feb 04, 2015 4:38 pm

I'm on a one week on/one week off schedule along with an infusion of Irinotecan and Erbitux.

I take 3,600 mg daily--two 1,800 mg doses.

I've been on Xeloda on and off (more on than off) for the past six years.

I get almost zero side effects from Xeloda, other than some hand and foot cuts that might also be caused by the other chemo I'm on.

Times when I was on Xeloda by itself, I didn't really even notice it. The hardest part is remembering to take the pills. I've gotten a lot better at that.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: questions for those on Xeloda

Postby KWT » Wed Feb 04, 2015 4:47 pm

I've been on and off it for year and a half. Now I'm 7days on 7days off 3000 mg per day just a. It of nausea at times.

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: questions for those on Xeloda

Postby skypup » Wed Feb 04, 2015 4:53 pm

Thanks, guys, I'm relieved to not hear that it makes you continually sick!

One more question: I know I am supposed to take it within 30 minutes of a meal. I eat small meals usually; do you think that matters much?

Eric, I'm on irinotecan and Erbitux (which gives me the finger cuts) with the Xeloda, too. Right now they have me on a weekly Erbitux and a 3-weekly irinotecan cycle. Don't know if I can face the infusion room every week, though...

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: questions for those on Xeloda

Postby peanut_8 » Wed Feb 04, 2015 4:58 pm

Last year for adjuvant chemo I was on 3000 mg twice daily dose (1500 morning + 1500 evening). 2 weeks on and 1 week off, for 6 rounds. I had mild-moderate HFS, low blood pressure and irritated mucus membranes. I drank about 3 liters of water daily which helped, and used a lot of moisturizer.

never specifically asked my on about how large the meals should be. I spaced mine out for breakfast and dinner. Sometimes at breakfast I really didn't feel like eating, and would only have a piece of toast. I think the 30 minute cut-off is more important than the quantity of food.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: questions for those on Xeloda

Postby KWT » Wed Feb 04, 2015 5:06 pm

I usually just take it with some yogurt or a banana.

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: questions for those on Xeloda

Postby juliej » Wed Feb 04, 2015 5:09 pm

Skypup, I'm no longer on Xeloda but I'll let you know my experience. I did the normal 2 weeks on/one week off regimen for 14 months. After surgery I had an additional 10 months of Xeloda, but it was on the one week on/one week off schedule. Of the two, I highly preferred the one week on/one week off schedule. I had a lot less side-effects with it.

As you probably know, you take the pills twice a day (morning and evening) with a full glass of water within 30 minutes after the end of a meal. That "within 30 minutes" is variable though. For instance if I had a light meal like soup, I'd take it in 15 minutes or less. For me, the sweet spot was usually 20 minutes after a regular meal. Any more or less brought on nausea.

Besides HFS I also lost my fingerprints on Xeloda! :shock: Apparently that's an unusual side-effect, but it's weird if it happens to you. You don't realize those little ridges are what enable you to grip things. Everything was slippery and hard to hold. They are starting to come back now. I also lost 3 toenails due to HFS, despite putting heavy lotion on my hands and feet every day. I have delicate skin though and was pretty active. I recommend getting a shoe with a cushy sole and a wider than normal toe box. I wore Keen sandals a lot - they are kind of like a sandal and a hiking shoe combined. They were supportive for walking, hiking, etc. and kept my feet cool when the Xeloda heated them up.

Hope this helps!
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

AbsumZero
Posts: 43
Joined: Sat Sep 27, 2014 2:39 pm

Re: questions for those on Xeloda

Postby AbsumZero » Wed Feb 04, 2015 5:33 pm

Starting in October I've been taking 2 500mg tablets twice daily, about 10-12 hours apart, 2 weeks on 1 week off. I also take them about 20 minutes after eating a full meal and with about 16 oz of water. So far I get cracks on my hands and feet... the ones on my feet are the worst because I keep getting sock fuzz in the cracks but having my hands suddenly crack and bleed can be embarassing. I also had trouble with my nose getting so dry inside that my nostrils were full of scabs but I bought a humidifier and they quickly healed up. I'm also doing Oxali every 3rd week and Erbitux weekly and so far my white cells have been fine and my liver panel is creeping up, but slowly. I have trouble with my potassium and red cells but the fatigue is pretty mild apart from a few days after the Oxali.
7/14 DX Stage 4 w/kidney mets @ 32
8/14 resection, nephrectomy, & temp colostomy, 4/36 lymph nodes
9/14 Common iliac chain node mass
10/14 XELOX and Erbitux
1/15 NED

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: questions for those on Xeloda

Postby skypup » Wed Feb 04, 2015 5:53 pm

Thank you everyone, this forum is such a good thing! I didn't know about the full glass of water thing... now I do!

AbsumZero
Posts: 43
Joined: Sat Sep 27, 2014 2:39 pm

Re: questions for those on Xeloda

Postby AbsumZero » Wed Feb 04, 2015 6:24 pm

I know that being my first-line treatment likely had a lot to do with it, but if it helps any, the Xelox + weekly Erbitux shrunk my 2x2x2 cm. lymph node mass too small for a CT to see by my 5th cycle, and I hope you see some strong results too. The weekly infusions are a hassle but it quickly becomes routine and it seems to be worth it so far.
7/14 DX Stage 4 w/kidney mets @ 32
8/14 resection, nephrectomy, & temp colostomy, 4/36 lymph nodes
9/14 Common iliac chain node mass
10/14 XELOX and Erbitux
1/15 NED

User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: questions for those on Xeloda

Postby BrownBagger » Wed Feb 04, 2015 6:57 pm

My onc says the most important thing is that you've got food in your stomach. So, I'm not really picky about it like I used to be. For me, any time within half an hour of eating is fine.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: questions for those on Xeloda

Postby KWT » Wed Feb 04, 2015 8:06 pm

I think I'm lucky in the hfs department,I think I've done the lotion thing two or three times and I've been setting tile,grouting,building fences you know shit that messes up your hands. I just get sensitive around my fingernails.

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: questions for those on Xeloda

Postby cathy123 » Wed Feb 04, 2015 8:29 pm

I only took it for 5 1/2 weeks during radiation. My onc told me just not to take it on an empty stomach but wasn't too concerned about the size of the meal or making it exactly 30 minutes. I didmt hVe too many side effects, and think most were due to radiation. My hands never hurt but did start to discolor a bit so I lathered on the lotion and made soneone else wash the dishes. I took 1500 mg twice a day.

Good luck!
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: questions for those on Xeloda

Postby lpas » Wed Feb 04, 2015 9:20 pm

I'm not sure if you've seen it but Maia posted an interview with Dr. Lin several months back where he talked about Celebrex and its impact on Xeloda side effects. Apparently a retrospective study showed that Celebrex decreased incidence of hand and foot syndrome significantly. I'm getting ready to start Xeloda tomorrow myself (Celebrex as well if I can get the prescription filled in time) so we'll see if that holds true. I don't have the medication bottle yet but I think I'm doing 1500mg (3 pills) twice a day for 14 days on and 7 off. FYI, here's the link to the interview:

http://www.colorectalcancerupdate.com/edition/2002/2/edward_sp.htm

Here's hoping it's minimal side effects for both of us!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 168 guests