How to tackle Xeloda side effect

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esuperbaby
Posts: 26
Joined: Thu Jan 03, 2019 1:55 am

How to tackle Xeloda side effect

Postby esuperbaby » Mon Mar 04, 2019 3:28 am

Hi all,

I have 8 cycles of Xelonda treatment... now just finished 1 cycle.. before the treatment, I went through some posts and thought this medicine is quite manageable... but seems not as I expect..

I got feeling of nauseous and loss of appetite... this get a bit improved after some kind of medicine.
I got start the pain on my foot....
my hand started to turn a bit darker..
sometimes feeling tire...

now in cycle 1 resting days... and will start cycle 2 in two days later.

Anyone can share some suggestion to release the uncomfortable causing by the Xelonda ? Thanks soooo much !
40M
diagnosed on 12Dec18,surgery done on 17Dec18.
Right ascending colon, laparoscopic right hemicolectomy
Moderately differentiated adenocarcinoma
TNM code: T3N0M0, stage II
Positive lymph nodes: 0/26
Baseline CEA value: 2.6
Lymphovascular invasion (LVI): Area suggestive but not definite for peritumoral lymphovascular permeation are noted
Perineural invasion (PNI): absent
Surgical margins: clear
MSI status : negative
Xelonda: started from 15Feb19 (2 weeks Xelonda + 1 wk off, total 8 cycles)

Beckster
Posts: 418
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: How to tackle Xelonda side effect

Postby Beckster » Mon Mar 04, 2019 5:20 pm

esuperbaby wrote:Hi all,

I have 8 cycles of Xelonda treatment... now just finished 1 cycle.. before the treatment, I went through some posts and thought this medicine is quite manageable... but seems not as I expect..

I got feeling of nauseous and loss of appetite... this get a bit improved after some kind of medicine.
I got start the pain on my foot....
my hand started to turn a bit darker..
sometimes feeling tire...

now in cycle 1 resting days... and will start cycle 2 in two days later.

Anyone can share some suggestion to release the uncomfortable causing by the Xelonda ? Thanks soooo much !


Hi esuperbaby! How many mg are you taking a day? Xeloda is manageable...you have to realize that you will have a new "normal" as the cycles progress. You just finished one cycle....my feet and hands did not start to darken until after cycle 3. Is the pain at the bottom of your foot? I found that the soles of my feet were very tender. You have to wear soft comfortable shoes...I lived in Sketchers with memory form. Next, you have nausea...are you eating enough, especially when taking your medicine.
I ate numerous times a day...the more I ate, the less nausea. Diet when you are done. You are going to feel tired...take a nap when you can. I took one every day. Also, I found that I felt worse on my week off than during treatment. Are you putting Utterly cream or cream with urea in it? This all became my new "normal." You are not going to feel like you never had chemo...

Lastly, speak to your onc...he can adjust your dose. My dose was adjusted after cycle 4. I was taking 3000mg a day (3 pills in the morning and 3 pills at night). Instead of lowering the daily dose, he cut my treatment cycle from 14 days to 12 days. I had 9 days off instead of 7. This helped me with the HFS. The bottom of my feet and palms were very tender, but it became my new "normal." Give it time...you will adjust.

Beckster
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D

rp1954
Posts: 1528
Joined: Mon Jun 13, 2011 1:13 am

Re: How to tackle Xelonda side effect

Postby rp1954 » Mon Mar 04, 2019 5:58 pm

Normally, if it's bad enough, what's likely to happen is that they'll reduce your dosage and/or your treatment schedule.

One thing that made my wife's oral chemo more difficult is food and supplement borne, folic acid - the common, absolute wrong form of vitamin B9 for 5FU based chemo. Folic acid - 5FU metabolism increases chemo side effects to varying degrees based on the person and the folic acid intake. We totally eliminated folic acid sources and used a natural folates source daily (liver); then she was even able to increase her 5FU content in the chemo.

There may be supplements that reduce your side effects further and perhaps even improve your treatment success odds. There are blood tests that might give a better view of your odds, side effects, treatment situation, and possibilities. Some people get rid of most of their side effects, too.

Some blood tests that we prioritized beyond the "standard ones", for some of your type comments, are CA199, LDH, 25 hydroxy vitamin D, hsCRP, ferritin and ceruloplasmin.
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

esuperbaby
Posts: 26
Joined: Thu Jan 03, 2019 1:55 am

Re: How to tackle Xelonda side effect

Postby esuperbaby » Mon Mar 25, 2019 2:11 pm

Hi Beckster,

I’m taking 2150mg x 2 times a day (total 4350mg daily)
I’m around 62kg

My hands are darken a lot after 2 cycles ..

Appetite is ups and downs during the 2nd cycle.
Now under the rest days after 2nd cycle and feel good ..

However, my White blood cell starts to going down..
Any supplement would help?

Would meet my oncologist this fri and really need to discuss if can reduce dosage or revise the schedule ..!

Thanks again !



Beckster wrote:
esuperbaby wrote:Hi all,

I have 8 cycles of Xelonda treatment... now just finished 1 cycle.. before the treatment, I went through some posts and thought this medicine is quite manageable... but seems not as I expect..

I got feeling of nauseous and loss of appetite... this get a bit improved after some kind of medicine.
I got start the pain on my foot....
my hand started to turn a bit darker..
sometimes feeling tire...

now in cycle 1 resting days... and will start cycle 2 in two days later.

Anyone can share some suggestion to release the uncomfortable causing by the Xelonda ? Thanks soooo much !


Hi esuperbaby! How many mg are you taking a day? Xeloda is manageable...you have to realize that you will have a new "normal" as the cycles progress. You just finished one cycle....my feet and hands did not start to darken until after cycle 3. Is the pain at the bottom of your foot? I found that the soles of my feet were very tender. You have to wear soft comfortable shoes...I lived in Sketchers with memory form. Next, you have nausea...are you eating enough, especially when taking your medicine.
I ate numerous times a day...the more I ate, the less nausea. Diet when you are done. You are going to feel tired...take a nap when you can. I took one every day. Also, I found that I felt worse on my week off than during treatment. Are you putting Utterly cream or cream with urea in it? This all became my new "normal." You are not going to feel like you never had chemo...

Lastly, speak to your onc...he can adjust your dose. My dose was adjusted after cycle 4. I was taking 3000mg a day (3 pills in the morning and 3 pills at night). Instead of lowering the daily dose, he cut my treatment cycle from 14 days to 12 days. I had 9 days off instead of 7. This helped me with the HFS. The bottom of my feet and palms were very tender, but it became my new "normal." Give it time...you will adjust.

Beckster
40M
diagnosed on 12Dec18,surgery done on 17Dec18.
Right ascending colon, laparoscopic right hemicolectomy
Moderately differentiated adenocarcinoma
TNM code: T3N0M0, stage II
Positive lymph nodes: 0/26
Baseline CEA value: 2.6
Lymphovascular invasion (LVI): Area suggestive but not definite for peritumoral lymphovascular permeation are noted
Perineural invasion (PNI): absent
Surgical margins: clear
MSI status : negative
Xelonda: started from 15Feb19 (2 weeks Xelonda + 1 wk off, total 8 cycles)

esuperbaby
Posts: 26
Joined: Thu Jan 03, 2019 1:55 am

Re: How to tackle Xelonda side effect

Postby esuperbaby » Mon Mar 25, 2019 2:15 pm

Hi rp1954,

Would you pls let me know what kinds of supplement that may help me?

Thanks!

rp1954 wrote:Normally, if it's bad enough, what's likely to happen is that they'll reduce your dosage and/or your treatment schedule.

One thing that made my wife's oral chemo more difficult is food and supplement borne, folic acid - the common, absolute wrong form of vitamin B9 for 5FU based chemo. Folic acid - 5FU metabolism increases chemo side effects to varying degrees based on the person and the folic acid intake. We totally eliminated folic acid sources and used a natural folates source daily (liver); then she was even able to increase her 5FU content in the chemo.

There may be supplements that reduce your side effects further and perhaps even improve your treatment success odds. There are blood tests that might give a better view of your odds, side effects, treatment situation, and possibilities. Some people get rid of most of their side effects, too.

Some blood tests that we prioritized beyond the "standard ones", for some of your type comments, are CA199, LDH, 25 hydroxy vitamin D, hsCRP, ferritin and ceruloplasmin.
40M
diagnosed on 12Dec18,surgery done on 17Dec18.
Right ascending colon, laparoscopic right hemicolectomy
Moderately differentiated adenocarcinoma
TNM code: T3N0M0, stage II
Positive lymph nodes: 0/26
Baseline CEA value: 2.6
Lymphovascular invasion (LVI): Area suggestive but not definite for peritumoral lymphovascular permeation are noted
Perineural invasion (PNI): absent
Surgical margins: clear
MSI status : negative
Xelonda: started from 15Feb19 (2 weeks Xelonda + 1 wk off, total 8 cycles)

Beckster
Posts: 418
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: How to tackle Xelonda side effect

Postby Beckster » Mon Mar 25, 2019 2:42 pm

I think you need to speak with your onc...Xeloda is known to lower white blood count; however, that never happened to me. I do not know of any supplements and my onc didn't want me taking any. My hands and especially my feet got very dark. On a positive note, it will go away after treatment. My hand/foot is what made my onc lower my dose. They start out at the highest level, but they have wiggle room to adjust if needed and it would not affect the effectiveness of the treatment.



esuperbaby wrote:Hi Beckster,

I’m taking 2150mg x 2 times a day (total 4350mg daily)
I’m around 62kg

My hands are darken a lot after 2 cycles ..

Appetite is ups and downs during the 2nd cycle.
Now under the rest days after 2nd cycle and feel good ..

However, my White blood cell starts to going down..
Any supplement would help?

Would meet my oncologist this fri and really need to discuss if can reduce dosage or revise the schedule ..!

Thanks again !



Beckster wrote:
esuperbaby wrote:Hi all,

I have 8 cycles of Xelonda treatment... now just finished 1 cycle.. before the treatment, I went through some posts and thought this medicine is quite manageable... but seems not as I expect..

I got feeling of nauseous and loss of appetite... this get a bit improved after some kind of medicine.
I got start the pain on my foot....
my hand started to turn a bit darker..
sometimes feeling tire...

now in cycle 1 resting days... and will start cycle 2 in two days later.

Anyone can share some suggestion to release the uncomfortable causing by the Xelonda ? Thanks soooo much !


Hi esuperbaby! How many mg are you taking a day? Xeloda is manageable...you have to realize that you will have a new "normal" as the cycles progress. You just finished one cycle....my feet and hands did not start to darken until after cycle 3. Is the pain at the bottom of your foot? I found that the soles of my feet were very tender. You have to wear soft comfortable shoes...I lived in Sketchers with memory form. Next, you have nausea...are you eating enough, especially when taking your medicine.
I ate numerous times a day...the more I ate, the less nausea. Diet when you are done. You are going to feel tired...take a nap when you can. I took one every day. Also, I found that I felt worse on my week off than during treatment. Are you putting Utterly cream or cream with urea in it? This all became my new "normal." You are not going to feel like you never had chemo...

Lastly, speak to your onc...he can adjust your dose. My dose was adjusted after cycle 4. I was taking 3000mg a day (3 pills in the morning and 3 pills at night). Instead of lowering the daily dose, he cut my treatment cycle from 14 days to 12 days. I had 9 days off instead of 7. This helped me with the HFS. The bottom of my feet and palms were very tender, but it became my new "normal." Give it time...you will adjust.

Beckster
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D

User avatar
betsydoglover
Posts: 976
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: How to tackle Xeloda side effect

Postby betsydoglover » Mon Mar 25, 2019 3:39 pm

Hi -

I have been on Xeloda twice six treatments each time - started at 4000mg/day and reduced after 3 treatments.

Xeloda is not without side effects, especially when taking the full dose vs what is used in conjunction with radiation therapy.

I don't mean this to be harsh, but it is important to prioritize your side effects - e.g. if your hands and feet are "dark" that alone does not matter.

High reflectivity of hands and feet (red, somewhat shiny skin - and often somewhat hot) is normal, but when you are not doing anything, placing your feet and hand on "ice packs" can ease the burning and make you feel better. (Many "ice packs" that don't require you to use ice - just keep pack in the freezer until you need it.)

Soft shoes help a lot - when not at work, I wore crocks with gel inserts and it helped a lot.

Peeling hands and feet can be helped by use of a serious cream - e.g. Udderly Smooth. Don't take baths and keep your showers as short as possible as hot water can ultimately exacerbate the hand-foot syndrome.

Xeloda "nausea" is not normally the kind that results from serious chemo poison (which responds to many anti-nausea drugs). Instead, usually Xeloda is more a result of GI "irritation" and you may have to live with it. But, as someone said, eating more frequent smaller meals can help with that.

Being tired is normal, but it is usually tolerable. If you are able and feel the need, then taking a short nap can be beneficial.

Most oncs will give you a dose reduction (or extend the week off) after a few treatments - in fact the drug manufacturer's literature actually says that is expected.

You need to talk with your oncologist - hopefully you both can figure out a dose that makes your side effects tolerable.

Please take care,
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
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

rp1954
Posts: 1528
Joined: Mon Jun 13, 2011 1:13 am

Re: How to tackle Xeloda side effect

Postby rp1954 » Mon Mar 25, 2019 4:20 pm

We're not drs, and we have little concrete idea what your biology is, beyond population odds and your stated preliminaries - some things more common than others.

So yes, we eliminated most of my wife's chemo toxicity for her oral chemo - another 5FU derivative, increased the chemo drug's cancer inhibition, and then increased her 5FU content another 33% - 70%, depending on which baseline you compare (original vs reduced dose after toxicity). We got WBC, RBC and platelets up. But we did our homework with labs and skilled comparisons with the literature for her biology. We also consulted with our own alt MD, and the Riordan Clinic. Riordan has had Xeloda patient(s) published. Part of this type of involvement can even be done in the US via phone and internet.

So far, you've read over, or blown off my previous comments where I've given you a lot of hints about possibilities with a little homework that might be useful with skilled supervision (your own alt MD or ND). When I went to school, blowing off homework got a 0. In this arena, it can get you negative results.
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

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: How to tackle Xeloda side effect

Postby O Stoma Mia » Tue Mar 26, 2019 12:49 am

Last edited by O Stoma Mia on Tue Mar 26, 2019 4:37 am, edited 1 time in total.

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: How to tackle Xeloda side effect

Postby O Stoma Mia » Tue Mar 26, 2019 1:02 am

esuperbaby wrote:Hi rp1954,

Would you pls let me know what kinds of supplement that may help me?

Thanks!


You can get this type of information by ordering some tests, under the guidance of a doctor. There are various test panels available to check for nutritional and other deficiencies. For example:

http://store.riordanclinic.org/

jmn
Posts: 48
Joined: Sat Aug 11, 2018 8:20 pm
Location: New York/Philadelphia

Re: How to tackle Xeloda side effect

Postby jmn » Fri Apr 05, 2019 3:09 pm

Glad to report that I started the last of eight cycles of Xeloda (6,000 MG of capecitabine daily). I can hardly wait to close out this chapter of my journey. Side effects include significant skin darkening, rashes and itching, some dehydration, fatigue, and elevated creatinine levels. My hair is also thinning, but I’m not sure whether that’s because of chemo or if it’s just another sign that I’m getting older. Thankfully, I haven’t had problems with diarrhea, nausea, and vomiting. All in all, with a really good moisturizer, some tolerance for discomfort, and a positive spirit, it’s manageable—I work every day and do my best to maintain a pretty normal lifestyle.

At the outset, Dr. Leonard Saltz, my oncologist at MSK, explained that I would experience these kinds of side effects. He also said that African American generally experience hyperpigmentation while taking capecitabine, noting that skin darkening and other side effects will clear up after treatment. I am banking on that—I’ve gotten so much darker that my primary doctor thought I had been vacationing in the Caribbean when he saw me after I had been on the medication for a few months.
DX: CC, 7-9-18 @ age 61, male
Severe anemia (4.5 g/dl), 5-11-18; colonoscopy, 6-29-18
Lap-assisted right hemicolectomy, 7-16-18
G2, moderately differentiated adenocarcinoma in cecum, 4.2 x 3.7 x 0.7 cm
Stage IIB, pT4aN0 (first pathology DX: pT3N0)
0/24 lymph nodes, LVI present, PNI present, surgical margins clear, MSS
CEA: 3.0 (pre-op, 7-10-18); 0.7 (post-op, 8-8-18)
TX: Xeloda (capecitabine) monotherapy, 10-16-18 to 4-21-19
CEA: 4-19, 3.4; 5-19, 3.0; 7-19, 3.0
NED: 5-28-19 :D
Clear colonoscopy, 7-15-19 :D

Beckster
Posts: 418
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: How to tackle Xeloda side effect

Postby Beckster » Fri Apr 05, 2019 3:16 pm

jmn wrote:Glad to report that I started the last of eight cycles of Xeloda (6,000 MG of capecitabine daily). I can hardly wait to close out this chapter of my journey. Side effects include significant skin darkening, rashes and itching, some dehydration, fatigue, and elevated creatinine levels. My hair is also thinning, but I’m not sure whether that’s because of chemo or if it’s just another sign that I’m getting older. Thankfully, I haven’t had problems with diarrhea, nausea, and vomiting. All in all, with a really good moisturizer, some tolerance for discomfort, and a positive spirit, it’s manageable—I work every day and do my best to maintain a pretty normal lifestyle.

At the outset, Dr. Leonard Saltz, my oncologist at MSK, explained that I would experience these kinds of side effects. He also said that African American generally experience hyperpigmentation while taking capecitabine, noting that skin darkening and other side effects will clear up after treatment. I am banking on that—I’ve gotten so much darker that my primary doctor thought I had been vacationing in the Caribbean when he saw me after I had been on the medication for a few months.



The darkening will go away...it took a full 6 months to be back to normal. I tan very easily and do not burn, have very dark feet and palms of hands, but now they are back to pre chemo... I am happy to hear that you made it through all cycles!
57/F
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Type: Adenocarcinoma
Tumor size:3.5 cm x 2.5 x 0.7 cm
Grade: G3 (path) G2 (pre-op)
TNM: T3N0M0/IIA
LN: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction
1/2/17 to 6/9/17- Xeloda monotherapy
6/17,12/17,6/18,12/18, 6/19, 12/19 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/18-3.1, 6/18-3.0, 9/18 2.8, 12/18 2.5 3/19 3.1 6/19 3.1 9/19 2.6 12/19 2.8 6/20 3.0
Clear Colonoscopy 10/17, 11/19 :D


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