8 cycles of Xeloda- your experience

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Lydia666
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Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

8 cycles of Xeloda- your experience

Postby Lydia666 » Sat Jan 09, 2016 1:19 pm

I am in the middle of my 3 rd cycle of Xeloda and my main symptom is the hand - foot syndrome but i feel like it's affecting my skin overall. It's darker and has some spots. When i did it short term with the radiation, my hands/ feet became normal after one month, but now i am doing it long term so i was wondering what was your experience? Did your skin come back to normal eventually?
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

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

Re: 8 cycles of Xeloda- your experience

Postby BrownBagger » Sat Jan 09, 2016 1:54 pm

It comes and goes for me, like every other chemo symptom. It's worse in the winter because of the dry air.

I keep my feet happy by applying Bag Balm daily on my feet (before I put my socks on in the morning). Hands are a bit trickier, since I make my living with a keyboard and Bag Balm is pretty greasy. At night and on long drives, I put the Balm on under examination gloves that I swipe from my doctors or buy at the grocery store. Swiping them is cheaper. Other stuff might work, but the Bag Balm is cheap and it really works for me.

I'm glad I don't make a living playing guitar, or I wouldn't be able to make a living.
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.

Bob_Weiss
Posts: 743
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: 8 cycles of Xeloda- your experience

Postby Bob_Weiss » Sat Jan 09, 2016 4:33 pm

My adjuvant chemo was Xeloda only, as described below. I had hand-foot syndrome which was not too bothersome, although it briefly became more severe during my final two rounds. A week after my chemo was completed the symptoms had disappeared, except that my left foot now has darker and drier skin than prior to treatment. Fortunately, no lingering pain or reduced function in the foot.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

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

Re: 8 cycles of Xeloda- your experience

Postby teachpdx » Sat Jan 09, 2016 7:11 pm

I had HFS that lasted for three years, but I'm the exception to the rule. My fingers and toes DO get colder much easier than before and when I run and my face gets red - all of it does except the tip of my nose and around my lips - which is white. Quite a look. I try not to have to be anywhere after I've run. Everyone is different so there is no one size fits all which the doctors seem to not quite get sometimes. Best of luck. :? Kristi
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!

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CRguy
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: 8 cycles of Xeloda- your experience

Postby CRguy » Sat Jan 09, 2016 7:25 pm

I had Xeloda twice :
neoadjuvant chemoradiation (lower dose)
adjuvant chemo (higher dose)

Had 1 dose reduction with adjuvant and had a temp ileo, so the "bag" took the hit for any GIT stuff :shock:

Have had NO lingering problems from HFS except the "fingerprint" thing ... where the actual topography of my findgertips are less prominent and robust and I am embracing my new career as a safecracker :mrgreen:
BUTT it makes it harder to "snap" open the clear plastic veggie bags at the grocery store :twisted: .... seriously !

My only lingering neuropathy / hot-cold / tingling issues are a gift from FOLFOX :twisted: :twisted: :twisted:

Bag Balm and soft socks / "sleeping" gloves were the order of the day when I was on Xeloda and I was back to normal in a few weeks after quitting !

HTH

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: 8 cycles of Xeloda- your experience

Postby cathy123 » Sat Jan 09, 2016 9:51 pm

I only did 5 rounds (plus the 25 radiation days), but my hands and feet bounced back quickly once I quit. I didn't have that much discoloration, but my feet were very sore if I walked much while on the pills.
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

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: 8 cycles of Xeloda- your experience

Postby elise » Sun Jan 10, 2016 7:15 pm

I finished xeloda with some neuropathy that never left. Otherwise my skin did go back to normal.

My biggest skin saviour was drinking TONS of water every day (3-4L/day).

Good luck, xeloda was nasty for hands and feet but overall I had good QOL on it.

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: 8 cycles of Xeloda- your experience

Postby Lydia666 » Sun Jan 10, 2016 8:54 pm

elise wrote:I finished xeloda with some neuropathy that never left. Otherwise my skin did go back to normal.

My biggest skin saviour was drinking TONS of water every day (3-4L/day).

Good luck, xeloda was nasty for hands and feet but overall I had good QOL on it.

Elise

Elise, thank you for your reply. Interesting that you had a recurrence after 8 rounds of xeloda- did you have vascular invasion? I am glad you are doing well now.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

Lydia666
Posts: 676
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: 8 cycles of Xeloda- your experience

Postby Lydia666 » Sun Jan 10, 2016 8:56 pm

Thank you everyone for your answer. I hope things will go back to normal when i stop. Now my feet hurt :(
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
August 2016- DCIS and decided post prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Devastation, total shock- oct 2018, invasion of peri mets
Dec 20 - 2 round of folfox
Mom to 4 & 7 yrs kids - at least i brought them to this level of independence.

User avatar
elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: 8 cycles of Xeloda- your experience

Postby elise » Mon Jan 11, 2016 7:46 am

Lydia666 wrote:
elise wrote:I finished xeloda with some neuropathy that never left. Otherwise my skin did go back to normal.

My biggest skin saviour was drinking TONS of water every day (3-4L/day).

Good luck, xeloda was nasty for hands and feet but overall I had good QOL on it.

Elise

Elise, thank you for your reply. Interesting that you had a recurrence after 8 rounds of xeloda- did you have vascular invasion? I am glad you are doing well now.


Who knows why I reoccured (especially to metastatic). There is a small possibility it was there all along. My surgeon was shocked. I was lucky to be resectable :) But we all know that the reoccurrence rate of mCRC is really high. So I'm enjoying day by day, knowing there are no promises.
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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

Re: 8 cycles of Xeloda- your experience

Postby juliej » Tue Jan 12, 2016 10:34 pm

CRguy wrote:Have had NO lingering problems from HFS except the "fingerprint" thing ... where the actual topography of my findgertips are less prominent and robust and I am embracing my new career as a safecracker :mrgreen:
BUTT it makes it harder to "snap" open the clear plastic veggie bags at the grocery store :twisted: .... seriously !

You have that too?! My fingerprints actually disappeared for a few years. Now they are very faint, which means I'm missing the "grippies" when I try to hold slippery things. (Don't go there, CRguy!)

You're right: we could be safecrackers though! :D
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

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CRguy
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: 8 cycles of Xeloda- your experience

Postby CRguy » Wed Jan 13, 2016 12:29 am

juliej wrote:....... which means I'm missing the "grippies" when I try to hold slippery things. (Don't go there, CRguy!)

...MOI ????? :shock:
heaven forbid I should EVER do double entendres and stuff ...
on a COMPLETELY designed for CRguy rebuttle post here .... :mrgreen:

OK homies ... BUTT just 'cos it's YOU....juliej !!!!!

seriously ... I gots a million really great lines
comebacks 'R Us and stuff ... :shock:
PLEASE just ONE oneliner ?????

:mrgreen: :mrgreen: :mrgreen:
Your secret is SAFE with me.

Cheers and Harmony
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Vol
Posts: 26
Joined: Thu Jul 23, 2015 3:57 am

Re: 8 cycles of Xeloda- your experience

Postby Vol » Fri Jan 15, 2016 7:31 am

I'm start my 8th and last cycle of Xeloda on Monday (2000mg - twice a day). All in all, I've tolerated it well. I have some hand and foot syndrome, but it is manageable.

Sorry that I stopped coming here, but I felt guilty that I was 2A - like I didn't deserve to be here with so many warriors fighting more serious battles. I have worked hard at staying busy with my job and family, determined not to let cancer take any more of my life than absolutely required. My surgeon ran a CEA Monday, which was 1.3. I'm hopeful to join the NED crowd in March. ...but as a friend of mine with rectal cancer pointed out, "This is club you never leave". Scan anxiety is starting and my scan isn't for two months.

Back to the point, Xeloda hasn't been too bad for me. I did 4 cycles of Oxaliplaten too - which put me in the hospital once and I hated (I'm sure there are many here that dealt with worse). Good Luck!
Dad - 51
Father of 3 girls (27, 26, 20)
08/15 - Resection 08/15
08/15 - Dx - Stage 2A - High Risk (perf colon), 0 of 27 nodes
08/15 - Start - 8 cycles Xeloda, first 4 with Oxaliplatin (done in February)

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

Re: 8 cycles of Xeloda- your experience

Postby BrownBagger » Fri Jan 15, 2016 12:40 pm

juliej wrote: Now they are very faint,


So much for the fancy iPhone log-in.
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.

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

Re: 8 cycles of Xeloda- your experience

Postby juliej » Fri Jan 15, 2016 4:11 pm

BrownBagger wrote:So much for the fancy iPhone log-in.

You're right. I have to use the standard passcode method.

I sat next to a CSI-type forensic guy on a flight to NYC and he said there's a product that will enhance fingerprints in dead bodies so they can identify someone who's been dead awhile. I have no idea what's in it, but I thought about using it to enhance my prints and then creating a latex model to use for iPhones, access to security doors, etc. Might make me feel like a super-spy!
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


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