To Xeloda or not to Xeloda

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WriterGirl1969
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Location: Central NY

To Xeloda or not to Xeloda

Postby WriterGirl1969 » Fri Apr 15, 2016 9:00 pm

Hi all.
I'm giving a very real amount of consideration to choosing Xeloda as my chemo treatment. Reason #1 is that taking pills vs. getting iv drugs seems just so much less stressful to me, in spite of the potential for greater side effects. Reason #2 is that I'm the primary income provider and insurance carrier for my family, and I'm very concerned about maxing out FMLA and then losing my job if I have to take a ton of time just to get the stuff, let alone for time I may need to deal with it physically.

So, I'm putting out a feeler. If you've taken Xeloda, can you let me know the details of your experience? How does the regimen work? Is it every day for 6 months straight? Or is it X weeks on then X weeks off like others? Were consistent crappy days the norm? If so, were they worth it, and why?

Any and all info appreciated beyond words.
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

Nik Colon

Re: To Xeloda or not to Xeloda

Postby Nik Colon » Fri Apr 15, 2016 11:17 pm

Just what I have heard, 2 weeks on then 1 off, repeat. I know for at least those doing it with oxi (xelox) (from what I recall), not sure if it's the same if you are just on xeloda itself. I'm sure someone else will chime in with more info.

mariane
Posts: 687
Joined: Sun Sep 13, 2015 6:16 pm

Re: To Xeloda or not to Xeloda

Postby mariane » Fri Apr 15, 2016 11:34 pm

My dad was doing Xeloda only chemo for 6 months: 2 weeks on, 1 off as Nik wrote. At first he had zero side effects and felt very well. He said he loved chemo like the one. After about 4 months he developed hand foot syndrome: red, painful hands and feet, he complained of chest pain ( blamed Xeloda for atrial fibrillation which began during last month of his treatment but he was 74 at diagnosis. He is 5 years NED now and hand foot syndrome long gone but AF stayed. Anyway he feels well and still works.
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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horizon
Posts: 1608
Joined: Tue Apr 12, 2011 10:10 pm

Re: To Xeloda or not to Xeloda

Postby horizon » Sat Apr 16, 2016 12:02 am

Did 6 months of Xeloda and Oxi.

On Wed I would took the entire day off from work and got an Oxi infusion. That was my starting point for two weeks of Xeloda pills. Worked from home Thur + Fri and took it easy over the weekend. Monday I was back at work and the gym. After the two weeks of pills I had one week off (best week ever) and then it was time for more Oxi and pills. Repeat that for 6 months. I had mild hand/foot syndrome and several other frustrating symptoms, but nothing close to debilitating. I didn't miss any work that wasn't planned, which surprised me. Everyone reacts differently is something important to remember.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

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

Re: To Xeloda or not to Xeloda

Postby elise » Sat Apr 16, 2016 8:35 am

I've done both xeloda, FOLFOX and 5FU...

Xeloda: Done usually as a 2 weeks on, 1 week off. 8 cycles. Very expensive drug if you're uninsured (mine was about $2000 per 3 week cycle). Easy to take with minimal nausea. Tiredness wasn't too bad. Diarrhea was mostly manageable. My hand and foot syndrome was NUTS. I could barely walk or touch anything by day 7 of every cycle. I had long-term neuropathy from it in the end.

FOLFOX: (I have a port): this stuff was NASTY for me. Instant issues with cold. I was outside in a t-shirt with mitts and a scarf on. My eyes would twitch from a breeze. Nerve damage set in by round 5. I have permanent neuropathy from this. Days 5-6 I was bedridden but aside from that the tiredness wasn't too bad. Nausea wasn't great for day 1-6 but controlled with meds.

5FU: much easier than FOLFOX. Tiredness for day 4-5 wasn't great. By cycle 8 or so I needed a break so my body could heal a little and get some overall energy back. Neuropathy continued but much better than FOLFOX. Nausea wasn't bad.

Both are decent options with their own ups and downs. If you can avoid the hand and foot syndrome, xeloda is nice :)

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

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Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: To Xeloda or not to Xeloda

Postby Mastan » Sat Apr 16, 2016 9:08 am

I have done Xeloda in combination with Celebrix, that is the ADAPT Protocol the Dr. Lin uses at the Seatle Cancer Care Alliance. Xeloda is 2 weeks on 1 week off. For a month or so side effects were not too problematic. Then the hand/foot syndrome kicked in and things got nasty. A lot of skin peeling off, redness, and swelling. I ended up with an infection in one of my big toes that had to be treated with minor surgery by a podiatrist. Everyone reacts differently to the chemo poison so you may want to give it a try and see how it plays out. I am back on the infused 5-FU and the hand/foot syndrome is just a distant bad memory.
Dx 6/2010 rectal CA

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: To Xeloda or not to Xeloda

Postby justin case » Sat Apr 16, 2016 11:54 am

Mastan wrote:I have done Xeloda in combination with Celebrix, that is the ADAPT Protocol the Dr. Lin uses at the Seatle Cancer Care Alliance. Xeloda is 2 weeks on 1 week off. For a month or so side effects were not too problematic. Then the hand/foot syndrome kicked in and things got nasty. A lot of skin peeling off, redness, and swelling. I ended up with an infection in one of my big toes that had to be treated with minor surgery by a podiatrist. Everyone reacts differently to the chemo poison so you may want to give it a try and see how it plays out. I am back on the infused 5-FU and the hand/foot syndrome is just a distant bad memory.

I work on my feet, and need my hands to work a very labor intense job .I was very afraid of the hand and foot syndrome, so I stuck with 5 FU.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: To Xeloda or not to Xeloda

Postby AppleTree » Sat Apr 16, 2016 1:34 pm

I just finished 5 weeks of 3000 mg a day (off on Saturday/Sundays). No problems. DR gave me hand and foot cream and to use it alot. I did. I know this was a short course compared to other people, but 5 weeks worked for me. 4 of my 5 weeks of radiation was OK too. Week 5...not such a picnic.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: To Xeloda or not to Xeloda

Postby WriterGirl1969 » Sat Apr 16, 2016 2:55 pm

Thank you everyone. This is wonderful, and very appreciated. I am trying to take everything into consideration, and this really helps. I really am feeling strongly that I want to at least try the Xeloda. I feel as though keeping my morale up is extremely important, and the idea of not having to contend with IV's and hours out of work and in a chair getting infused will help with that. I can be extremely anal about doing things, and feel I could keep up with the water, B6 and creams that can help alleviate the hand/foot syndrome. And if not, well we can always switch it up if needed. I will arm myself with all of this information, and again, thank you *SO* much for all of the information.
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

NoFear32
Posts: 31
Joined: Mon Feb 15, 2016 11:53 pm

Re: To Xeloda or not to Xeloda

Postby NoFear32 » Sat Apr 16, 2016 3:39 pm

I did 8 rounds of chemo total in a 2week cycle.

My first two rounds were the standard FOLFOX via my power port. I would sit at the infusion center for 4+hours and then was sent home with the portable infusion fanny pack for another 48 hours. After 48 hours I would go back to the center and have the stuff removed. I suffered instantly and severely during these first two rounds and the theory is that I have a bad reaction to the way my body processes the 5FU intravenously. It was messing with my heart. The neuropathy and extreme sensitivity from the OXI took effect instantly as well and my dosage was reduced for the second round.

From rounds 3-8 we continued doing the OXI via IV, but I took the Xeloda pills at home. It was so much easier for me to function on Xeloda! However, towards round 8 the toxins from all the drugs had been building up in my system and even with Xeloda the ability for me to function was decreasing rapidly with each round.

I am almost 6 months done with chemo and the side effects (neuropathy, energy, etc) is getting better. Still not 100%, but I am seeing some improvement. I started working full time again about 5 months ago so I could keep my family covered under my insurance plan as well.

Good luck with your decision and stay strong!
32 yo,Wife & Mom, ages 9 & 3
4/17/15: Colonoscopy = 6cm in sigmoid + 6 polyps
4/24/15: Colectomy (no illeo)
4/27/15: Diagnosed Stage 3b CC, 2/55 lymph nodes
May2015: Genetic testing, no Lynch, FAP, Gardners
6/1/15: Started FOLFOX - BAD reaction to 5FU, switched rounds 3-8 to combo of XELODA + OXI via IV.
9/24/15: Round 8 and done with chemo!
Nov2015: First CT scan, X-rays, blood = NED
Jan2016: Bloodwork = NED
Next up: Colonoscopy & Endoscopy, more CT scans, etc

Nik Colon

Re: To Xeloda or not to Xeloda

Postby Nik Colon » Sat Apr 16, 2016 5:10 pm

WriterGirl1969 wrote:Thank you everyone. This is wonderful, and very appreciated. I am trying to take everything into consideration, and this really helps. I really am feeling strongly that I want to at least try the Xeloda. I feel as though keeping my morale up is extremely important, and the idea of not having to contend with IV's and hours out of work and in a chair getting infused will help with that. I can be extremely anal about doing things, and feel I could keep up with the water, B6 and creams that can help alleviate the hand/foot syndrome. And if not, well we can always switch it up if needed. I will arm myself with all of this information, and again, thank you *SO* much for all of the information.

If you are just getting 5fu, you would not be spending hours getting infused (just wanted to let you know).

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

Re: To Xeloda or not to Xeloda

Postby peanut_8 » Sat Apr 16, 2016 5:38 pm

Since I have RC, I had Xeloda in combination with radiation for 5 1/2 weeks, followed by a month of recovery, and finally 8 rounds of Xeloda alone. The 8 rounds consisted of 2 weeks taking pills at 12 hour intervals. Generally lined up with breakfast and dinner. Then a week off.

I made a conscious effort to drink as much water as possible. Like 2-3 liters per day. I also walked at least 6 days a week, except for the last couple of weeks, when I was to tired. It seems to me at least that it's important to drink a lot of liquid to flush the bad crap out of your system. I ended up with mild to moderate H&F about 1/2 way through treatment, and at that time, my onc reduced the dose. He said they usually expect to reduce the dose at some point. I was generous with lotion on both my feet and hands.

It's a personal issue, butt I felt that getting a port was to invasive for my taste.

Best Wishes, 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

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

Re: To Xeloda or not to Xeloda

Postby Lydia666 » Sat Apr 16, 2016 6:45 pm

You can be very functional on xeloda. I had hand foot syndrome, i had to have longer breaks then one week- i did 6 cycles but we had to adjust almost for all- lower the dose, 10 day breaks etc. I am only 3 weeks out now and it's much better. My nails have thinned but i am expecting full recovery.
In short , xeloda is not too bad, your lifegoes on normally but the hand foot syndrome is annoying.
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.

Lund5505
Posts: 69
Joined: Tue Jul 08, 2014 1:37 am

Re: To Xeloda or not to Xeloda

Postby Lund5505 » Sat Apr 16, 2016 6:58 pm

I have done both folfox and xeloda alone. You will need to do the 3 hours for the premeds and oxy regardless of 5fu or xeloda.

The biggest difference on my opinion is that with the xeloda you do not need to make an additional trip to the infusion center for disconnect. I also had a lot of difficulty sleeping with the pump between the humming and the needle in my chest and getting tangled in the cords I was strung out from lack of sleep by disconnect day. I seemed to have less fatigue with the xeloda than the 5fu but to be fair my 5fu was with the oxy and the xeloda was not. I had mild hand foot syndrome from both. Not really painful just seemed like the skin on the bottom of my feet got thicker. I would try the xeloda first and switch to 5fu if needed.
10/2013 dx female @54 stage IV innumerable liver mets
CEA 2600 kras wild MSS
11/2013 folfox avastin 8 rounds
6/2014 neuropathy development CEA 9.8 but won't go lower
8/2014 colon resection
11/2014 folfiri and cetuximab 9 rounds CEA 1700
4/2015 cetuximab only 4 rounds CEA down to 20 but won't go lower
7/2015 chemo break getting too toxic
10/2015 xeloda 3 rounds CEA 800 then 300 then back up to 900
1/2016 irinotecan CEA 1800 at start 2/2016 too toxic
4/2016 Cea 3200
Hospice recommended but I'm not ready yet

Nik Colon

Re: To Xeloda or not to Xeloda

Postby Nik Colon » Sat Apr 16, 2016 7:12 pm

Lund5505 wrote:I have done both folfox and xeloda alone. You will need to do the 3 hours for the premeds and oxy regardless of 5fu or xeloda.

The biggest difference on my opinion is that with the xeloda you do not need to make an additional trip to the infusion center for disconnect. I also had a lot of difficulty sleeping with the pump between the humming and the needle in my chest and getting tangled in the cords I was strung out from lack of sleep by disconnect day. I seemed to have less fatigue with the xeloda than the 5fu but to be fair my 5fu was with the oxy and the xeloda was not. I had mild hand foot syndrome from both. Not really painful just seemed like the skin on the bottom of my feet got thicker. I would try the xeloda first and switch to 5fu if needed.


Question, what pre meds did you have that took that long?

I mentioned this b4 but, I had no noise from my pump. I have heard this, but I didn't have this issue. My pre meds b4 the pump when just 5fu only took 20 mins (steroids). Also, I had a nurse come out to disconnect me so I didn't have to go back in.

When I had folfox and folfiri, the total time was only 2 hrs


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