Xeloda for Stage II - did you work?

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menreeq
Posts: 8
Joined: Fri Jun 30, 2017 10:26 am

Xeloda for Stage II - did you work?

Postby menreeq » Fri Jun 30, 2017 11:47 am

Just registered with Colon Club today, I'm a newbie. But I'm already thankful for the info I've gleaned from this site.

I am a week post-op from lap sigmoid colectomy with final Path T3N0M0, Stage IIA. I am planning for adjuvant chemotherapy with Xeloda monotherapy because that 3-4% benefit is worth it to me. But I am trying to figure out how to go back to work after my six weeks of postop leave. My work involves lots of sitting down all day and thousands of mouse clicks and scrolls, as well as requires the ability to concentrate for hours on end. My doctors say that I'll be able to go back to work and that Xeloda is easy enough that it won't be an issue. A mentor who worked while on adjuvant chemo for low rectal CA told me it was definitely doable, but not easy (however he was not on Xeloda monotherapy). I am worried about the side effects of fatigue, HFS, and diarrhea. I think I can deal with those symptoms for maybe 8 hours in a day, but a 12-hour day would be rough. Having to take frequent bathroom breaks would be an issue. Also, I work in a hospital and would be concerned about exposure to infection.

For those of you who have been on Xeloda monotherapy, what advice would you give about working during the six months of adjuvant therapy? I know each person will react differently, but if I can get enough responses, maybe I can have a plan for returning to work. For example, perhaps I could return part-time, working half days. Or is it better to work normally for the first week, and then take week 2 off, then back to normal during the off week?

I thank you in advance for sharing your experiences.
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Started Xeloda monotherapy 8/13/17

ashima2016
Posts: 31
Joined: Thu Dec 01, 2016 10:56 am

Re: Xeloda for Stage II - did you work?

Postby ashima2016 » Fri Jun 30, 2017 12:49 pm

hubby was on 5-fu, which compared to folfox is night and day. he just felt some nausa and was able to work.

sounds like you have a desk job too, just make sure you drink a loooooooooooooot of water while taking xeloda. oh well, we should drink a looooooot of water either way.

i would take it easy for the first two cycles and see how your body react to it. is wah an option for you?

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CRguy
Posts: 9167
Joined: Sun Feb 10, 2008 6:00 pm

Re: Xeloda for Stage II - did you work?

Postby CRguy » Fri Jun 30, 2017 12:54 pm

Welcome menreeq to the best forum NOBODY ever wants to HAVE to join !

Thank you for your educated, informative, well reasoned and noninflammatory response in another topic thread here
... you know whereof I speak !

Me :
Xeloda neoadjuvant chemoradiation pre-op = rescheduled work day start time after radiation sessions and worked full shifts, minimal HFS, minimal GIT issues

Monotherapy Xeloda adjuvant chemo post-op, but I had a temp ileo from an LAR (TME), post-op abscess and as a vet had to do a lot of standing / lifting etc. So while I started work 6 weeks later, I modified my work week ( less days / half days to start ), had no toilet issues ( ileostomy pouch ), had 1 dose reduction of Xeloda for HFS. Nausea and lethargy were never huge issues, but overall deceased energy levels were present. All just going from memory ( 2007 resection )

Best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

KElizabeth
Posts: 379
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Xeloda for Stage II - did you work?

Postby KElizabeth » Fri Jun 30, 2017 1:31 pm

I'm not a stage 2, nor have I taken Xeloda specifically, but I have done 5FU with oxaliplatin and Iriotecan. I've had 57 doses if 5FU and work full time through it. I am able to run my kids around and keep a consistent schedule. My work allows some flexibility and I know that's not easy to come by. I guess the deciding factor will be how you handle the effects of Xeloda after your first few. I hear it can be more toxic than 5fu.
I hope you find a balance of work and treatment.
It should go by fast once you get started.
Take care
~Elizabeth
Female age 38- ,two kids, age eleven and fifteen.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFURI plus Avastin - Sept, 2015 - current
Art therapy January 2015 to current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA:: 10.2 December, 2016
CEA: 40.3 January, 2017
CEA: 16.4 March 2017
Facebook.com/natureinink

Beckster
Posts: 134
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Location: New Jersey

Re: Xeloda for Stage II - did you work?

Postby Beckster » Fri Jun 30, 2017 3:43 pm

menreeq wrote:Just registered with Colon Club today, I'm a newbie. But I'm already thankful for the info I've gleaned from this site.

I am a week post-op from lap sigmoid colectomy with final Path T3N0M0, Stage IIA. I am planning for adjuvant chemotherapy with Xeloda monotherapy because that 3-4% benefit is worth it to me. But I am trying to figure out how to go back to work after my six weeks of postop leave. My work involves lots of sitting down all day and thousands of mouse clicks and scrolls, as well as requires the ability to concentrate for hours on end. My doctors say that I'll be able to go back to work and that Xeloda is easy enough that it won't be an issue. A mentor who worked while on adjuvant chemo for low rectal CA told me it was definitely doable, but not easy (however he was not on Xeloda monotherapy). I am worried about the side effects of fatigue, HFS, and diarrhea. I think I can deal with those symptoms for maybe 8 hours in a day, but a 12-hour day would be rough. Having to take frequent bathroom breaks would be an issue. Also, I work in a hospital and would be concerned about exposure to infection.

For those of you who have been on Xeloda monotherapy, what advice would you give about working during the six months of adjuvant therapy? I know each person will react differently, but if I can get enough responses, maybe I can have a plan for returning to work. For example, perhaps I could return part-time, working half days. Or is it better to work normally for the first week, and then take week 2 off, then back to normal during the off week?

I thank you in advance for sharing your experiences.


Welcome... I just finished Xeloda monotheraphy for Stage IIA of the cecum (right side). I started on January 2nd and just finished on June 9th. There are side effects, but they are doable. Hand and Feet Syndrome is very common with Xeloda. My onc had to reduce my dosage by the 4th cycle. My hands and feet became sore, red and than darkened. Stay on top of it! I used Utterly cream every day on my hands and feet. I found my week off to be my worse. As you progress, fatigue became worse, but I worked my way through it. I did not get diarrhea until the last 2 days of the cycle....it went into the week off for about 3 days. Just when it stops, it time to start again. However, diarrhea was there but it did not effect my life. Also, Xeloda will dry you out...stay hydrated! Use me as a resource throughout you journey....if you have any concerns or questions, just email me.

I made it through for 6 months without interruption. I am sure you will too...

Becky
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0/IIA
Positive lymph nodes: 0 out of 24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8

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kellywin
Posts: 473
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Xeloda for Stage II - did you work?

Postby kellywin » Fri Jun 30, 2017 5:06 pm

Menreq - I would think it's doable, although I wasn't on the monotherapy, I was stage IIIC, took Xeloda for 5.5 weeks during radiation and took Xeloda with Oxi (Xelox) for 6 rounds. I worked full time, not one day off during radiation. I had zero problems from the Xeloda, the Oxi kicked my butt and I did have to take off a couple/few days of work off right after infusions, but that was the Oxi, the rest of the time on Xeloda was no problem for me. I know that there are some people that have had problems with HFS, but I wasn't one of them. I don't know if I was on it longer if I would have had problems or not. I've started to think from reading posts for the past few years that you're either going to get the HFS or you won't, it's probably a crapshoot.

If I were to take a guess, if you have bathroom problems it's probably not going to be from the Xeloda, but from the missing chunk of guts. But I made it through radiation without any major accident and somehow I made it through post surgery too. I'm a bank Exec, fairly high stress job, lots of meetings, etc. If you have any problems, get a prescription for Lotomil and also take fiber (metamucial - and unfortunately the powder is really the only thing that works for me at least).

Welcome & good luck. Lot's of advice on this forum.
Kelly, mom 12 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2017 Clear CT!

NoFear32
Posts: 29
Joined: Mon Feb 15, 2016 11:53 pm

Re: Xeloda for Stage II - did you work?

Postby NoFear32 » Sat Jul 01, 2017 12:20 am

I switched to Xeloda for the last 3-8 rounds of chemo (bad reaction to 5FU via IV for rounds 1-2), and it was...ok.

I work from home (lots of computer clicking!) and couldn't even sit long enough at the computer to justify working :/ I also have hardly any colon left, so bathroom issues while on chemo were a problem for me.

I was completely exhausted while on Xeloda (and chemo in general!). During my 'week off', my strength would feel like it was coming back but then it was time to begin taking those pills and go in for the OXI IV drip again...so the 'fatigue cycle' kept replaying itself and worsening every round.

My advice would be: if you can 'take it easy' on yourself, you should. If you have to work then realize that you need to give yourself a trial period to see how your body is handling things. Everyone reacts to chemo differently, and you just won't know what's going to happen until you are going through it. All you can do is your best, and do whatever you can to keep a positive attitude :)

Best wishes and prayers to you!
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

menreeq
Posts: 8
Joined: Fri Jun 30, 2017 10:26 am

Re: Xeloda for Stage II - did you work?

Postby menreeq » Mon Jul 03, 2017 11:45 pm

Thank you everyone for your input. I am going to see what options I have in terms of working from home or starting with a more flexible, part-time setup so I can gauge how I react to Xeloda. I really appreciate your stories and experiences. And I am gonna go buy some of that cream everyone is talking about. :)
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Started Xeloda monotherapy 8/13/17

prs
Posts: 103
Joined: Sat Dec 12, 2015 7:09 pm
Location: Central California

Re: Xeloda for Stage II - did you work?

Postby prs » Tue Jul 04, 2017 11:28 am

It's all about the dose!!!

A higher dose kicked my butt, a lower dose was tolerable.
Peter, age 65 at dx
DX 4 cm x 4 cm very low rectal adenocarcinoma into the sphincters 01/15
Stage III T3 N1 M0 with two suspicious lymph nodes
26 sessions IMRT radiation with 1,000 mg Xeloda twice per day 03/15 to 04/15
Complete clincal response to the chemoradiation...the tumor shrank completely away 06/15 :D
No surgery...Habr-Gama watch and wait protocol instead
Xelox chemotherapy 07/15-12/15
MRI and rectal exam every three months starting 07/15
MRI and rectal exam every six months starting 07/17
NED

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Xeloda for Stage II - did you work?

Postby betsydoglover » Tue Jul 04, 2017 12:45 pm

I worked full time while on Xeloda alone. A little GI irritation, but diarrhea was rare. More tired that usual, but not bad enough to keep me from working (or vacationing). My job was a desk job and I was up and about running from meeting to meeting. I think I may have missed a few days of work, but nothing significant.

Good Luck,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
6 cycles Xeloda + Avastin,
NED (PET every 3 mo)
Avastin only 10/09-5/11

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horizon
Posts: 1410
Joined: Tue Apr 12, 2011 10:10 pm

Re: Xeloda for Stage II - did you work?

Postby horizon » Sat Jul 08, 2017 1:21 pm

When they give me the long list of side effects I was worried also. You have to remember that everyone is different and you don't know how you will react. I did 6 months of Oxi + Xeloda. I didn't miss a day of work that was unplanned, which shocked me. I took of Wed for infusions and worked from home Thur and Fri. By Monday I was back at work and back at the gym. I did have some hand/foot syndrome pop up with Xeloda but it got better when they reduced my dosage.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

menreeq
Posts: 8
Joined: Fri Jun 30, 2017 10:26 am

Re: Xeloda for Stage II - did you work?

Postby menreeq » Tue Sep 12, 2017 10:55 pm

An update and request for advice:

So, after the postop period, I returned to work part time. I'm in the middle of cycle 2, and I'm starting to feel tenderness mainly at the pressure points of my feet (ball and heel). Minimally red. No cracking apart from what was already there. No peeling. Using Udderly Smooth cream liberally. Onc said to reduce dose by 25% if I am having difficulty walking. I walk a little slower and feel every step. It's easier with socks and sneakers than sandals. I think I can tough it out a little, but maybe I shouldn't even try to. Anyone have HFS start like this? Any insight? Any advice on shoes for work??? I can't tolerate my platforms or heels anymore.

Also, did anyone also get these "spots" on palms and soles? Like brown spots of varying size and shape, flat and painless. I've read a few people get hyperpigmented macules, particularly if brown skinned, and that it is unclear if this is a precursor to HFS.

Thanks in advance for sharing your experience!
Stage IIA rectosigmoid CC (T3N0M0)
Dx 6/5/17 @age 41, mom to 5 & 2yo girls
Workup: c-scope, EUS, rectal MRI, CT C/A/P
AdenoCA 5.5cm, WHO Grade 2, 0/22 LN, no distant mets
CEA 1.9 (6/5/17)
No lymphovasc/perineural invasion, clear margins
MSI intact, OncotypeDx RS 7
Lap sig colectomy 6/23/17, no ileo/colostomy
Genetics counseling negative for mutations, 4 VUS
Started Xeloda monotherapy 8/13/17

Beckster
Posts: 134
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Xeloda for Stage II - did you work?

Postby Beckster » Wed Sep 13, 2017 4:34 am

menreeq wrote:An update and request for advice:

So, after the postop period, I returned to work part time. I'm in the middle of cycle 2, and I'm starting to feel tenderness mainly at the pressure points of my feet (ball and heel). Minimally red. No cracking apart from what was already there. No peeling. Using Udderly Smooth cream liberally. Onc said to reduce dose by 25% if I am having difficulty walking. I walk a little slower and feel every step. It's easier with socks and sneakers than sandals. I think I can tough it out a little, but maybe I shouldn't even try to. Anyone have HFS start like this? Any insight? Any advice on shoes for work??? I can't tolerate my platforms or heels anymore.

Also, did anyone also get these "spots" on palms and soles? Like brown spots of varying size and shape, flat and painless. I've read a few people get hyperpigmented macules, particularly if brown skinned, and that it is unclear if this is a precursor to HFS.

Thanks in advance for sharing your experience!


Yep... you sound like me! Started with red and tenderness in both hands and feet by the 2nd cycle. I also had brown spots on my hands and bottom of my feet. By the end of the 3rd cycle, my feet peeled. Heels were not possible...switch shoes! I bought Go Walks by Sketchers...comfort was more important than fashion! I tolerated it to the end of the third cycle and than he reduced my dosage. I was taking 3000mg per day (3 pills in the morning and 3 pills in the evening). My onc from MD Anderson lowered my dosage at the end of the 3rd cycle. Instead of taking away one pill a day, he had me take my pills for 12 days instead of 14 days. Believe it or not, it is a less reduction than taking away one pill a day. It helped greatly and did not affect the effectiveness of the therapy. I am 3 months out of taking Xeloda and my hands and feet are 90% normal.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (biopsy from colonoscopy)
TNM: T3N0M0/IIA
Positive lymph nodes: 0 out of 24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8

Aqx99
Posts: 118
Joined: Fri Mar 31, 2017 7:28 am
Location: Pfafftown, NC

Re: Xeloda for Stage II - did you work?

Postby Aqx99 » Wed Sep 13, 2017 9:27 am

I started hand/foot the same way you describe. It started on about day 9 of my second cycle of CapeOx. By day 10 I could barely walk, so my oncologist's PA had me stop the pills for the last 4 days. When I started cycle 3 last Wednesday, they had me reduce my dose from 4000mg/day to 3500mg/day to see if it helps. So far I think it has.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

susie0915
Posts: 167
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Xeloda for Stage II - did you work?

Postby susie0915 » Wed Sep 13, 2017 3:08 pm

I did xeloda with chemo/radiation before surgery. I really never had any side effects with the xeloda, most of my issues were from the radiation. After surgery I did xelox. Again, my side effects mostly were from oxi. Diarrhea, first bite syndrome, sensitivity to cold, and neuropathy that didn't really give me problems until about a month after treatment ended. My oncologist did reduce both xeloda and oxi. If you do have problems the 25% reduction may make the difference without reducing the effectiveness. I would talk to your oncologist about it. The less side effects the better.
57 yr old mother of 3
5/15 DX T3N0MO Stage 2A
6/15 5 wks of radiation/xeloda
7/15 sigmoidoscopy/scar tissue only
8/15 Pet scan NED
9/15 LAR
10/15 Bowel blockage. 3 1/2 weeks in hospital.
early ileo rev since
surgery to repair blockage. c-diff inf
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nodule onc thinks scar tissue
7/17 no change lung nodule
Currently NED


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