Anyone on daily Xeloda?

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behconsult
Posts: 251
Joined: Fri Jul 04, 2014 4:53 pm

Anyone on daily Xeloda?

Postby behconsult » Sun Mar 07, 2021 3:37 pm

I have been on a schedule of one week on and one week off of Xeloda and Avastin. A second opinion onc suggested a low dose daily as opposed to my current schedule to address fatigue. Has anyone done this and did you notice a difference? Thanks Bob
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

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beach sunrise
Posts: 416
Joined: Thu Mar 05, 2020 7:14 pm

Re: Anyone on daily Xeloda?

Postby beach sunrise » Sun Mar 07, 2021 4:36 pm

I have been on maintenance xeloda for almost a yr now. I do not have chemo fatigue with it so far. I do take energy boosting supplementation things like a tonic from Mederi Center, tremella mushroom, flavonoids and of course pots of coffee :)
Keep us posted on your decision about what you are going to do pretty please.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

rp1954
Posts: 1544
Joined: Mon Jun 13, 2011 1:13 am

Re: Anyone on daily Xeloda?

Postby rp1954 » Sun Mar 07, 2021 6:27 pm

My wife used daily chemo for 8 years with frequent IV vitamin C, and supplements for support of higher chemo dosages than possible without IVC, with a high quality of life and pretty good immune function e.g. WBC over 4 - 5.
Frequent enough IV vitamin C can help with fatigue and some chemo side effects to normalize life. For her, 4.7 days max interval - 3 per 2 wks (after 1 year much higher frequency).
Part of fatigue can be low WBC/RBC that can be addressed with supplements and special foods.

The daily chemo has advantages for trying to stop new seedlings but might need more oomph on existing sites with some kind of off label molecule.
We wanted whatever extra effect we could get by mild addons.
Also we shifted from metronomic dosing, simple TID, to a chronomodulated profile, TID with a time tooth for more kill, but maximum impact daily Xeloda would probably need a different profile than UFT-LV.

I see that your cells were BRAF mutants which may require more or different components than KRAS mutants.
e.g. BRAF mutants with HIF2 are harder to kill than KRAS mutants with HIF1 in terms of added vitamin C alone.
We had to add other components keep the oral chemo active, gradually shifting with time.

Have you ever done any of those extra blood tests I've mentioned?
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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beach sunrise
Posts: 416
Joined: Thu Mar 05, 2020 7:14 pm

Re: Anyone on daily Xeloda?

Postby beach sunrise » Sun Mar 07, 2021 7:35 pm

Oh yes how could I forget to mention IVC!
I take IVC twice a week and it is such an energy booster, probably more than anything else I take.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

behconsult
Posts: 251
Joined: Fri Jul 04, 2014 4:53 pm

Re: Anyone on daily Xeloda?

Postby behconsult » Sun Mar 07, 2021 8:13 pm

rp1954 wrote:My wife used daily chemo for 8 years with frequent IV vitamin C, and supplements for support of higher chemo dosages than possible without IVC, with a high quality of life and pretty good immune function e.g. WBC over 4 - 5.
Frequent enough IV vitamin C can help with fatigue and some chemo side effects to normalize life. For her, 4.7 days max interval - 3 per 2 wks (after 1 year much higher frequency).
Part of fatigue can be low WBC/RBC that can be addressed with supplements and special foods.

The daily chemo has advantages for trying to stop new seedlings but might need more oomph on existing sites with some kind of off label molecule.
We wanted whatever extra effect we could get by mild addons.
Also we shifted from metronomic dosing, simple TID, to a chronomodulated profile, TID with a time tooth for more kill, but maximum impact daily Xeloda would probably need a different profile than UFT-LV.

I see that your cells were BRAF mutants which may require more or different components than KRAS mutants.
e.g. BRAF mutants with HIF2 are harder to kill than KRAS mutants with HIF1 in terms of added vitamin C alone.
We had to add other components keep the oral chemo active, gradually shifting with time.

Have you ever done any of those extra blood tests I've mentioned?




Thanks for the reply. Actually my labs are pretty close to normal despite taking 109 rounds of chemo (getting close to 7 years out from initial). I am on a brief chemo break now and better energy but still needing to nap despite sleeping plenty at night. I still work full time with a flex schedule. I will talk with my onc about iVC. My one cycle break is ending in a week.

Have you heard much about andrographis? Plenty of bench studies but no human subject trials.
Stage 4 Age 56 BrafV660E 5/14
spot on perit/ Right side tumor
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to four spots- Collapsed lung/chest tube 2x
Possible local recurrence in a spot or two on PET. Stable CT

zephyr
Posts: 312
Joined: Thu Aug 18, 2016 7:31 am

Re: Anyone on daily Xeloda?

Postby zephyr » Tue Mar 09, 2021 7:33 pm

Not quite what you asked but for almost 2 years I was taking Xeloda on Monday-Friday with weekends off and did great. I remember our favorite onc (that was you, wasn't it?) telling me that in Europe they take Xeloda every day with no issues. I suspect the folic acid supplemented in North American foods might be the reason Americans don't do as well, and I stayed away from cereals and bakery products with folic acid added. I was also getting IV-C twice a week. There was one brief period where the hand-foot got pretty nasty on my feet but I cut back on exercises that put pressure on my feet and it pretty much cleared up.
Nov-2009 Early stage CRC found during routine colonoscopy
2010, 2011, 2014 F/U colonoscopies, all clear
Jun-2016 CRC during followup colonoscopy, surgery, Stage 4, KRAS, MSS, inoperable lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Dec-2020 Progression, considering all options
Mar-2021 Forfiri/Avastin

Siti
Posts: 209
Joined: Thu Aug 01, 2019 10:58 am

Re: Anyone on daily Xeloda?

Postby Siti » Wed Mar 10, 2021 8:33 am

My husband was on xeloda 2 weeks on, 1 week off. He suffered very bad HFS and occasional tummy cramps/ diarrhoea so he has switched to Teysuno. Side effects are much milder but still present.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

WelshIan
Posts: 6
Joined: Wed Feb 24, 2021 3:52 pm

Re: Anyone on daily Xeloda?

Postby WelshIan » Tue Mar 23, 2021 1:55 am

Hi, yes I am on just xeloda daily for 14 days then 1 week off, taking 1500mg in the morning and 2000mg at night, I did have an issue with diarrhoea so was given SPC flakes and take 1.5dl per day and this has stopped the issues and returned my bowl to normal funtion.
28/10/2020 right side colon tumour from ct scan / with lung density
06/11/2020 colonoscopy tumour confirmed
09/12/2020 Laparoscopic right side colectomy / no stormi 5 days in hospital no compaction
05/01/2021 pathology staging T3c N2a 4 lymph nodes of 26 posiive
23/01/2021 ct scan - clear
02/02/2021 CAPOX 3 months cycle 1
24/02/2021 CAPOX 3 months cycle 2
17/03/2021 PICC line removed
17/03/2021 Xeloda cycle 3 cea 0.7
07/04/2021 Xeloda cycle 4 4000mg per day CEA 0.4
ongoing...

yvette88_8
Posts: 7
Joined: Mon Jul 20, 2020 6:57 pm

Re: Anyone on daily Xeloda?

Postby yvette88_8 » Sun Apr 11, 2021 2:18 am

Siti wrote:My husband was on xeloda 2 weeks on, 1 week off. He suffered very bad HFS and occasional tummy cramps/ diarrhoea so he has switched to Teysuno. Side effects are much milder but still present.


Is Teysuno available in the US ? or is it only in the UK?

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Green Tea
Posts: 367
Joined: Mon Oct 24, 2016 10:48 am

Re: Anyone on daily Xeloda?

Postby Green Tea » Sun Apr 11, 2021 6:18 am

yvette88_8 wrote:
Siti wrote:My husband was on xeloda 2 weeks on, 1 week off. He suffered very bad HFS and occasional tummy cramps/ diarrhoea so he has switched to Teysuno. Side effects are much milder but still present.

Is Teysuno available in the US ? or is it only in the UK?

Teysuno is the trade name for a combination chemo based on the drug tegafur. Tegafur is not available in the U.S.:

    rp1954 wrote:.... Our answer for prevention of hand foot syndome was two fold: IV vitamin C and a different 5FU drug, tegafur-uracil, that is made in Taiwan, Korea, India, China, Japan (still?) and Europe(still?), perhaps available in Mexico (it's listed in their national formulary)...

    rp1954 wrote:...  You also have the tegafur drug, TS-1, and maybe UFT (tegafur uracil) that aren't available in the US.  We chose UFT-LV over Xeloda for a personalized treatment with mild drugs and nutraceuticals, reasonable cost, better result, better quality of life...

If you want to know more about Tegafur, you can read some of Rp1954's past posts on the topic:


Siti
Posts: 209
Joined: Thu Aug 01, 2019 10:58 am

Re: Anyone on daily Xeloda?

Postby Siti » Mon Apr 12, 2021 9:20 am

yvette88_8 wrote:
Siti wrote:My husband was on xeloda 2 weeks on, 1 week off. He suffered very bad HFS and occasional tummy cramps/ diarrhoea so he has switched to Teysuno. Side effects are much milder but still present.


Is Teysuno available in the US ? or is it only in the UK?


In has been approved for use in EU for over a decade and have been in the market in Asia for a very long time. I’m not certain why it’s not approved in the US.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

yvette88_8
Posts: 7
Joined: Mon Jul 20, 2020 6:57 pm

Re: Anyone on daily Xeloda?

Postby yvette88_8 » Thu Apr 15, 2021 2:10 am

Siti wrote:
yvette88_8 wrote:
Siti wrote:My husband was on xeloda 2 weeks on, 1 week off. He suffered very bad HFS and occasional tummy cramps/ diarrhoea so he has switched to Teysuno. Side effects are much milder but still present.


Is Teysuno available in the US ? or is it only in the UK?


In has been approved for use in EU for over a decade and have been in the market in Asia for a very long time. I’m not certain why it’s not approved in the US.



Thank you so much, I dont understand either. Moms Xeloda stopped working, so now Im just trying to find a better drug. Moms current regimen is Oxyplatin and Xeloda and Zirabev.

catstaff
Posts: 48
Joined: Wed Mar 03, 2021 11:37 am

Re: Anyone on daily Xeloda?

Postby catstaff » Thu Apr 15, 2021 7:41 am

Most likely it hasn't been approved in the US because the manufacturer doesn't want to spend the money for the FDA requirements. They have a large market in Asia and Europe.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20:1.6, 3/20:4.3, 8/20:3.4, 11/20:2.7, 2/21:9.0 3/21:18,40 4/21:28,19
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

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WriterGirl1969
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Location: Central NY

Re: Anyone on daily Xeloda?

Postby WriterGirl1969 » Tue Apr 20, 2021 10:44 pm

I did Xeloda (oral) as mop-up chemo in 2016. They had me on a 2 week on, 1 week off schedule. After maybe 4 months it began to build up and I had a lot of hand/foot syndrome and fatigue. I went to a 1 week on 1 week off schedule after finding backing and information here on the group that supported this. As I recall, the doctor told me something like this - you try to do as much as you can to kill the cells. Doing it in shorter bursts can be beneficial because it allows you to tolerate the treatment for a longer duration, thus extending your treatment. It doesn't detract from the effectiveness because you start at the max of what your body volume indicates.

I don't know if that logic washes, but I understood what he was saying. If a lower dose allows you to still treat the cancer, then it's beneficial vs. detrimental. But as with everything else we endure, ultimately, it's our decision.

Wish you the best with whatever you decide, and I encourage you to share your choice and the downstream so others with similar questions can benefit from the information.

Smiles, hugs and prayers,
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.”


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