Xeloda vs. 5FU

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mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Xeloda vs. 5FU

Postby mhf1986 » Wed Feb 21, 2018 8:25 pm

Susan, YES, in response to your question. DH found the side effects from the Xeloda much worse than the 5fu. He was taking 8 Imodium a day and I thought we were going to have to ask for the prescription stuff. I was grateful he had a colostomy pouch! He lost 3 pounds in 7 weeks which isn't much but still. His feet had the skin peeling off the bottoms: I'd rub them with Eucerin or Lubriderm with urea every night. Feet are fine now. His hands cracked, especially around the nails. Legs swelled slightly. Bilirubin rose to 3.9 after 3 doses and onc refused to treat until it was under 2 for 4 weeks. So they decided it was back to the 5FU. I asked about the side effects and was told the usual "each person is different."

Now, I have heard that some people say Xeloda is a piece of cake. That's why he wanted to try it, because he's a chemo-for-lifer. Taking 3 pills after breakfast and 3 after dinner was easy for 2 weeks, except for the side effects! There was no nausea.

He goes for infusion on Tuesday, takes the subway to work on Wednesday, and stays home to nap on Thursday, then back to work on Friday and the following week. I wish he could go Thursday but Tuesday is the day his oncologist is at the hospital. I learned to disconnect him from the port, it's very easy. Home health came the first few times to show me.

If you are working pediatrics be careful of catching germs from the little ones! Or the big ones. :D

M
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: Xeloda vs. 5FU

Postby NHMike » Wed Feb 21, 2018 8:28 pm

Caat55 wrote:So the oxi is the big culprit for neuropathy. It am so back and forth with option 1 and 2.

Susan

So my advice is
Option 1: Try Xeloda for one or two cycles and see if you start getting HFS. If so, discontinue and switch to 5FU pump.
Option 2: Start with 5FU pump so there's no risk of HFS, but there will be some inconvenience and different side-effects.
In either case, talk to your onc about your profession and ask them to monitor any neuropathy from the oxaliplatin.

Hope this helps!
Juliej
[/quote]

Yup. I know that in spades. The Oxaliplatin has been the worst part of treatment for me.

Here's a video of me after 26 days of Xeloda and Radiation: https://www.youtube.com/watch?v=R_ipaq4HTk0

I have not played tennis since surgery. The Oxaliplatin makes it hard to be as active as normal for two weeks after the infusion and I need the recovery week to catch up on stuff that I didn't do the first two weeks. I have run into people that take Short-Term Disability for Adjuvant or a day or two off for infusion day and afterwards and others that spend a lot of the day sleeping. I normally consider myself physically tough but Oxaliplatin has turned me into jello.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

lovelife789
Posts: 160
Joined: Thu Aug 24, 2017 5:28 am

Re: Xeloda vs. 5FU

Postby lovelife789 » Wed Feb 21, 2018 8:45 pm

Option 1: Try Xeloda for one or two cycles and see if you start getting HFS. If so, discontinue and switch to 5FU pump.
Option 2: Start with 5FU pump so there's no risk of HFS, but there will be some inconvenience and different side-effects.
In either case, talk to your onc about your profession and ask them to monitor any neuropathy from the oxaliplatin.


Totally agree with Juliej here. That's what I did....
I know some friends started Xeloda had severe blisters on her feet but not on the hands. Everybody is different.
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

mozart13
Posts: 154
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Xeloda vs. 5FU

Postby mozart13 » Wed Feb 21, 2018 8:48 pm

Pump gets disconected in clinic, I had it on Tuesday, off on Thursday, somthing like 46 hrs after start. It would be hard for you to disconnect it unless you have health proffesional to do it.
Yours is gonna be disconected on Saturday. Sunday you will feel it, more than any other day, side effects of chemo.
You can try Monday, see how it goes, might have to take extra day as therapy progresses.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to the forum , so if this is not updated it means I remain negative!
Wish good luck to all!

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: Xeloda vs. 5FU

Postby heiders33 » Wed Feb 21, 2018 10:34 pm

Yes, I have red, blistery feet from the Xeloda. It hurts to walk around. It didn’t manifest itself until cycle 4 or 5. Hopefully now that I’m done it will go away eventually.
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: Xeloda vs. 5FU

Postby Caat55 » Wed Feb 21, 2018 10:37 pm

From the stats Julie gave, its 50% chance of hand foot syndrome. That's pretty high for me as my hands are my job and every sense. I am leaning toward 5 fu if I can get them to let me do disconnecting.
It's so much.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

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O Stoma Mia
Posts: 1602
Joined: Sat Jun 22, 2013 6:29 am

Re: Xeloda vs. 5FU

Postby O Stoma Mia » Thu Feb 22, 2018 5:12 am

Caat55 wrote:From the stats Julie gave, its 50% chance of hand foot syndrome. That's pretty high for me as my hands are my job and every sense.

Prior post:
    O Stoma Mia wrote:There are a couple of things related to HFS prevention that should be mentioned before the start of therapy. One of these is the recommendation to have a good pedicure/manicure before starting chemo. Other suggestions for minimizing the impact of HFS are given in the quote below. This might include minimizing use of gym machines that require pressing the hands against a hard surface, (Check with your doctor if you have any doubts.)

      PREVENTION [HAND FOOT SYNDROME]
      According to the American Society of Clinical Oncology (ASCO), patients at risk for HFS and HFSR should be instructed on the following preventive measures:
        * Limiting exposure of hands and feet to hot water when washing dishes or bathing
        * Taking cool showers or baths
        * Avoiding exposure to sources of heat, including saunas, sitting in the sun, or sitting in front of a sunny window
        * Avoiding activities that cause unnecessary force or friction on the feet, such as jogging, aerobics, and long walks
        * Avoiding contact with harsh chemicals used in laundry detergents or household cleaning products
        * Avoiding the use of rubber gloves to clean with hot water, as rubber traps heat against the skin
        * Avoiding the use of tools or household items that require pressing the hand against a hard surface, such as garden tools, knives, and screwdrivers.7,11

        A "3C" approach to TKI-associated HFSR outlines the following guidelines for prevention:

        * Controlling for calluses: before and during treatment, prophylactic removal of hyperkeratotic areas with a manicure or pedicure
        * Comfort with cushions: protection of tender areas, pressure points, and pressure-sensitive areas of the hands and feet through the wearing of well-padded, well-fitted, soft shoes; foam-type absorbing soles, and shock absorbers to relieve painful pressure points
        * Cover with creams: use of an emollient or keratolytic agent on callused areas of the palms and soles to moisturize and aid in natural exfoliation.10
      Ref. http://www.oncologynurseadvisor.com/ce-courses/prevention-and-management-of-hand-foot-syndromes/article/174390/

      http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58447&p=469055#p469055

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: Xeloda vs. 5FU

Postby Caat55 » Fri Feb 23, 2018 7:59 pm

Thanks for all the great information and support. Waiting to hear back from infusion folks if they will teach me or let home health nurse teach me to disconnect myself.
I can't afford to have permanent hand issues, even temporary ones would mess up my career.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

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O Stoma Mia
Posts: 1602
Joined: Sat Jun 22, 2013 6:29 am

Re: Xeloda vs. 5FU

Postby O Stoma Mia » Sat Feb 24, 2018 12:31 am

Have you decided on the type of IV port to get? There are different types, and some are more convenient than others.

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: Xeloda vs. 5FU

Postby Caat55 » Sat Feb 24, 2018 11:40 am

O Stoma Mia wrote:Have you decided on the type of IV port to get? There are different types, and some are more convenient than others.

I wasn't told I had a choice. I will call Monday, thank you. Is there a thread on the blog about them?
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

Cj51
Posts: 893
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: Xeloda vs. 5FU

Postby Cj51 » Sat Feb 24, 2018 2:39 pm

I had a Power Port, and it was a lifesaver. My Dr did not give me a choice, he just said "you'll be getting a port". He was right. Very easy to access, and not able to be seen. They'd use it everytime I needed an IV, too, and I liked that.

I had both Xeloda and 5FU during my treatment. With Xeloda, I did have HFS, and towards the end it got bad enough that they reduced the treatment. With 5FU, I felt awful. Tired, nauseated and I lost some hair. I found it harder to function on the 5FU. But the HFS did cause me some issues while on Xeloda. For me, Xeloda was the lesser evil. Everyone is different, so you might start out with the one that feels like the least bad option to you and go from there.

Good luck to you,
Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
4/2020 NED

Caat55
Posts: 680
Joined: Sat Dec 23, 2017 6:01 pm

Re: Xeloda vs. 5FU

Postby Caat55 » Sat Feb 24, 2018 4:24 pm

Maybe I start with xeloda, see how it goes. Simpler for sure.
Thank you.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

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O Stoma Mia
Posts: 1602
Joined: Sat Jun 22, 2013 6:29 am

Re: Xeloda vs. 5FU

Postby O Stoma Mia » Sun Feb 25, 2018 2:05 pm

Caat55 wrote:
O Stoma Mia wrote:Have you decided on the type of IV port to get? There are different types, and some are more convenient than others.

I wasn't told I had a choice. I will call Monday, thank you. Is there a thread on the blog about them?
Susan

Here is what MSKCC says about IV ports
.
https://www.mskcc.org/cancer-care/patient-education/your-implanted-port

Here is a search for threads that have "port" in the title:

http://coloncancersupport.colonclub.com/search.php?keywords=port&terms=all&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search


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