Anyone experienced with the 5-FU ball AND xeloda?

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Nor Cal
Posts: 45
Joined: Sun Dec 06, 2020 8:18 pm

Anyone experienced with the 5-FU ball AND xeloda?

Postby Nor Cal » Tue Nov 16, 2021 1:16 pm

After 23 trips home with the party ball, It's beginning to get a little old. I've been discussing with my onc potentially switching to the xeloda pill. I'm wondering if others have made that switch, and if so, how would you compare the side effects?
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - November 2021 23 cycles chemo (FOLFOXIRI x9, FOLFIRI x12, 5-FU x2) + Avastin (discontinued Nov 2021)
December 2020 - February 2021 Radioembolization, Chemoembolization x2

roadrunner
Posts: 179
Joined: Sun Jan 12, 2020 8:46 pm

Re: Anyone experienced with the 5-FU ball AND xeloda?

Postby roadrunner » Tue Nov 16, 2021 3:13 pm

I went from infusional chemo (FOLFOX, but a couple of cycles had no Oxi (6/8)) straight into Xeloda in 2019-20. Since the Xeloda was a lower dose (chemorad/Stage 3) than I assume it would be for you, YMMV, but I found the Xeloda way easier to tolerate. Sometimes I would forget that I was on it, or just feel vaguely crappy. The infusional 5-FU just hit me harder. If I have to do Xeloda in the future, I’d be ok with that. Again, it’s a slightly different context, but Xeloda isn’t bad at all IMO. I have no knowledge about any therapeutic difference, though I do recall seeing studies supporting, for example, FOLFIRI over XELIRI in the Stage 4 context.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; multiple biopsies negative
TAE 11/20, small amount of tumor removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
Stable in 6/28 scan.

itsfineimanurse
Posts: 9
Joined: Wed Apr 29, 2020 6:49 pm

Re: Anyone experienced with the 5-FU ball AND xeloda?

Postby itsfineimanurse » Tue Nov 16, 2021 8:50 pm

I did FOLFOX and then Xeloda with radiation. I loved the convenience of the pills. I had a baby and a toddler at the time so the chemo infusion was a drag.

My side effects were worse with the Xeloda though. Hand and foot syndrome set in hard, so did neuropathy (that was likely delayed onset). My platelets also tanked more on the Xeloda. The convenience was still worth it.

Good luck xx
Diagnosed at 34- 2 kids (now 4 and 2)
Dx. T3b N1a RC 01/2020
FOLFOX 01-05/2020
Xeloda + Radiation 06-07/2020
LAR/Diverting Ileostomy 9/2020- Pathological Complete Response!
Clear Scan 11/2020
Ileostomy Reversal 02/2021
Clear Scan 02/2021, 05/2021- graduated from 3 to 6 month scans/labs

Rock_Robster
Posts: 607
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Anyone experienced with the 5-FU ball AND xeloda?

Postby Rock_Robster » Tue Nov 16, 2021 9:48 pm

If I had to summarise my observations of others over 3 years - with almost no scientific rigour and obvious case exceptions - I would say Xeloda easier short-term, 5-FU easier long term.

The Xeloda dose is delivered more consistently twice a day typically over a period of 2 weeks at a time, and first has to be metabolised in the liver. 5-FU being infused IV over 48 hours is going to hit a bit harder (but then you get a 2 week break usually). The difference is many of the worse side effects of Xeloda - particularly hand-foot syndrome - tend to build up over time and eventually become dose-limiting.

In short my suggestion would be if you’re thinking of trying it, then try it - and you can always switch back.

Best of luck.
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14; then 2.0 - 3.1. Nov-21: 5.4
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation
07/19 ULAR w ileo, 1/27 LN+
08/19 Liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (since Dec-19)
11/21 New liver lesion (2 lymph nodes?), maybe 4 very small (<2mm) lung things

JJH
Posts: 324
Joined: Mon Apr 24, 2017 7:26 am

Re: Anyone experienced with the 5-FU ball AND xeloda?

Postby JJH » Tue Nov 16, 2021 11:13 pm

Nor Cal wrote:After 23 trips home with the party ball, It's beginning to get a little old. I've been discussing with my onc potentially switching to the xeloda pill. I'm wondering if others have made that switch, and if so, how would you compare the side effects?

Can you be more specific about what you mean by "switching"? Are you considering changing to Xeloda monotherapy (i.e., only Xeloda from now on, no Avastin), or are you talking about simply substituting Xeloda for 5FU so that your new regimen would be "Xeloda+Avastin" ? If the latter, then you would still have to go to the hospital for the Avastin infusions.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)

Nor Cal
Posts: 45
Joined: Sun Dec 06, 2020 8:18 pm

Re: Anyone experienced with the 5-FU ball AND xeloda?

Postby Nor Cal » Wed Nov 17, 2021 7:02 pm

JJH wrote:
Nor Cal wrote:After 23 trips home with the party ball, It's beginning to get a little old. I've been discussing with my onc potentially switching to the xeloda pill. I'm wondering if others have made that switch, and if so, how would you compare the side effects?

Can you be more specific about what you mean by "switching"? Are you considering changing to Xeloda monotherapy (i.e., only Xeloda from now on, no Avastin), or are you talking about simply substituting Xeloda for 5FU so that your new regimen would be "Xeloda+Avastin" ? If the latter, then you would still have to go to the hospital for the Avastin infusions.


We're discussing the options. I've recently discontinued Avastin as I have portal hypertension and the potential for bleeding is high risk. It will likely be just Xeloda, or Xeloda plus Irinotecan. I don't mind going in for infusion, I'm just really tired of lugging the ball around for 48 hours after each trip.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - November 2021 23 cycles chemo (FOLFOXIRI x9, FOLFIRI x12, 5-FU x2) + Avastin (discontinued Nov 2021)
December 2020 - February 2021 Radioembolization, Chemoembolization x2

Nor Cal
Posts: 45
Joined: Sun Dec 06, 2020 8:18 pm

Re: Anyone experienced with the 5-FU ball AND xeloda?

Postby Nor Cal » Wed Nov 17, 2021 7:04 pm

Thanks for all of the responses. I will ask my oncologist about the most recent data in a stage 4 setting.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - November 2021 23 cycles chemo (FOLFOXIRI x9, FOLFIRI x12, 5-FU x2) + Avastin (discontinued Nov 2021)
December 2020 - February 2021 Radioembolization, Chemoembolization x2

JJH
Posts: 324
Joined: Mon Apr 24, 2017 7:26 am

Re: Anyone experienced with the 5-FU ball AND xeloda?

Postby JJH » Thu Nov 18, 2021 1:00 am

Nor Cal wrote:Thanks for all of the responses. I will ask my oncologist about the most recent data in a stage 4 setting.

You should also ask the oncologist for detailed data concerning the Xeloda side-effects profile, both in terms of the number and type of likely side effects and their development and increase in severity over time. Some side effects are completely avoidable if advance preparations are made, while for others the effects may be unavoidable but their intensity can be mitigated and their time of eventual onset can be delayed significantly if, and only if, preparations are made in advance of starting the regimen

In my opinion, you cannot simply shift gears now and go directly into a Xeloda regimen without the risk of triggering a set of aggressive side effects that are insistent and difficult to control. You have to prepare yourself in advance for this regimen. The manufacurer's package insert for Xeloda doesn't say much about the complexity of this problem, so you will need to press the oncologist for all of the ad-hoc, off-record experiences he knows about, and it would also help for you to read literature on patient experiences with Xeloda. For example, several people on this forum have permanently lost some of their toenails due to Xeloda, but you won't find this sort of information in a manufacturer's package insert, and you won't find out how this could have been avoided by reading the manufacturer's package insert either.

In addition, you can usually get much better practical information by consulting various oncology nursing websites, where they often give nursing guidelines for dealing with HFS, both from a prevention and a treatment perspective.

"Early identification, addressing symptoms, and taking measures to prevent symptoms from worsening are imperative to improving clinical outcomes."
Source- https://www.oncologynurseadvisor.com/ho ... syndromes/
"The darkest hour is just before the dawn" - Thomas Fuller (1650)


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