New member with Xeloda question for Stage II

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ocgross10
Posts: 4
Joined: Sun May 13, 2018 1:26 pm

New member with Xeloda question for Stage II

Postby ocgross10 » Sun May 13, 2018 2:52 pm

I'm new to site and really needing some advice..here goes. Colon cancer IIA, T3, N0,M0, right side, 15 lymph nodes clear, clear margins. Nov. 2017 surgery to resection colon. Debate by Onc docs as to whether to start chemo...but I started...MSI low/stable, Onco score 26..so having said all that..Xeloda started..4000mg my 1st week, too much..then 3000mg and now 2500mg due to neuropathy in both feet and thrombophlebitis in foot and leg..I'm concerned that dosage now too low to "get" any possible random cells...I'm one week on and one week off..beginning week 8 of 12 in the morning...thanks for any input.

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peanut_8
Posts: 2230
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: New member with Xeloda question for Stage II

Postby peanut_8 » Sun May 13, 2018 4:35 pm

Hi ocgross10 welcome to Colon Talk.

Sorry to hear about your diagnosis.

Are you sure that Xeloda is causing neuropathy? That is typically related to oxaliplatin found in the FOLFOX combination. Xeloda is related to hand/foot syndrome. It's annoying to be sure, butt there are measures you can take to mitigate the symptoms. Drink lots of water to flush the bad crap from your system, and lots of moisturizing lotion to combat the swelling, redness and general uncomfortableness. I'm including a link with more info in case you're interested. http://chemocare.com/chemotherapy/side- ... drome.aspx

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Beckster
Posts: 257
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New member with Xeloda question for Stage II

Postby Beckster » Sun May 13, 2018 5:00 pm

ocgross10 wrote:I'm new to site and really needing some advice..here goes. Colon cancer IIA, T3, N0,M0, right side, 15 lymph nodes clear, clear margins. Nov. 2017 surgery to resection colon. Debate by Onc docs as to whether to start chemo...but I started...MSI low/stable, Onco score 26..so having said all that..Xeloda started..4000mg my 1st week, too much..then 3000mg and now 2500mg due to neuropathy in both feet and thrombophlebitis in foot and leg..I'm concerned that dosage now too low to "get" any possible random cells...I'm one week on and one week off..beginning week 8 of 12 in the morning...thanks for any input.


Welcome....as you can see from my signature, we are twins! I was on 3000mg of Xeloda for 6 months, 2 weeks on and one week off. The amount depends on your weight. My weight was 154 pounds. However, on my 3rd cycle, I developed hand/foot syndrome really bad. Instead of lowering my dose, my oncologist from MD Anderson removed 2 days; instead of 3000 mg for 12 days, I took it for 10 days. This really helped both physically and psychologically. If I can asked, what was your high risk factors that put you on chemo. Mine was LVI and Grade 3 tumor....both are subjective, but he felt that I should take the chemo. It was my decision. As my oncologist said...better some chemo than no chemo.

If you have any other questions, feel free to email me.
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 (pre-op)
TNM: T3N0M0/IIA
lymph nodes: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
Clear Colonoscopy 10/17 :D

NHMike
Posts: 1432
Joined: Fri Jul 21, 2017 3:43 am

Re: New member with Xeloda question for Stage II

Postby NHMike » Sun May 13, 2018 5:28 pm

Neuropathy is usually related to Oxaliplatin which is one of the drugs in FOLFOX and I describe it as a tingling in the fingers. Hands and Feet is usually related to 5FU or Xeloda. My description of Hands and Feet is that it feels like arthritis - you feel stiff in the joints. I've had both and can tell the difference mainly because Neuropathy declines with time from the infusion, while Hands and Feet get worse taking Xeloda for 14 days.

I started at 4,000 mg and went down to 3,500 mg. We had two one week breaks. The first was helpful in that I got to the point where the Hands and Feet peaked and they started declining so I had some reassurance that it wasn't permanent. There are some that report that Hands and Feet and/or Neuropathy can hit after treatment is over so that's still a concern. The stage 2 folks are in the gray zone for chemo. I'm 3B so no choice for me. I think that the dosage is based on your weight. Did your doctor talk to you about dose effectiveness at the lower levels? I would expect your oncologist to have experience and access to research in that area.
6/17: ER rectal bleeding; Colonoscopy
7/17: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 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; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/17: 2.7 x 2.2 x 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 cycles 12/17-6/18

retiredteacher
Posts: 80
Joined: Sat Oct 21, 2017 1:34 pm

Re: New member with Xeloda question for Stage II

Postby retiredteacher » Sun May 13, 2018 8:39 pm

The dose is dependent upon body surface area (meters squared) computed with a formula using height and weight. I was just reading about this this morning. Will try to find the formula for you. My oncologist has reduced me from 2500 daily down to 2000 daily due to gut problems (profound diarrhea.) So I've had the same questions - doc says this is where the experience and art comes in - the treatment at some point has to be tailored to what the patient can handle - but your doc must have a pretty good idea about the minimum effective dose rates - might be a question to ask him or her ... Welcome to "the club" - many knowledgeable and helpful people here!!
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

L.andr
Posts: 9
Joined: Thu Apr 19, 2018 12:59 am
Facebook Username: Lynn.Andrews

Re: New member with Xeloda question for Stage II

Postby L.andr » Mon May 14, 2018 7:08 am

peanut_8 wrote:Hi ocgross10 welcome to Colon Talk.

Sorry to hear about your diagnosis.

Are you sure that Xeloda is causing neuropathy? That is typically related to oxaliplatin found in the FOLFOX combination. Xeloda is related to hand/foot syndrome. It's annoying to be sure, butt there are measures you can take to mitigate the symptoms. Drink lots of water to flush the bad crap from your system, and lots of moisturizing lotion to combat the swelling, redness and general uncomfortableness. I'm including a link with more info in case you're interested. http://chemocare.com/chemotherapy/side- ... drome.aspx

Best Wishes,
peanut


Hello Peanut:
I checked out your advice on info about the hand/foot syndrome- it was very helpful. it seems like it will be hard to even eat if you can't use a knife. I live alone, so I will just have to be careful/watchful. Today I go for teaching on Xeloda and I can start any day this week, of course the sooner the better. I must say I am frightened of the side effects but I want to try, I want to beat this. Thanks for your knowledge also the reminder about drinking water, I am going to post signs to remind me.
L.andr (Lynn)
Age 65 female
Dx 4/18/18 at colonoscopy
Sigmoid colon tumor 2.8cm.
Lap colectomy 4/26/18.
Stage 2a adenocarcinoma.
CEA 3.3

User avatar
peanut_8
Posts: 2230
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: New member with Xeloda question for Stage II

Postby peanut_8 » Mon May 14, 2018 11:11 am

Lynn,

Glad to hear that the link was helpful. When I was on Xeloda I drank as much water as possible, like 3-4 liters per day. I also got ahold of Nunn's tablets and used them. They're good for replacing lost electrolytes, and add a bit of flavor. Gatorade would accomplish the same thing.

My onc reduced my dosage of Xeloda once, and explained that it was normal, and happens to most everyone.

Don't know if you're feeling up to any exercise, butt (FYI, not a mis-spelling, just Colon Talk humor). in my case that helped quite a bit. Walking helps with your mood, not sitting around moping and feeling sorry for yourself. It can also help to mitigate side effects like fatigue. Another link if you're interested. https://www.mdanderson.org/publications ... tment.html

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

ocgross10
Posts: 4
Joined: Sun May 13, 2018 1:26 pm

Re: New member with Xeloda question for Stage II

Postby ocgross10 » Tue May 15, 2018 9:11 am

Dear all...this is such a great group of folks to learn from...I have appt with onc on Wednesday..will report back...my
weight is 168lbs....my risk factors for chemo are T3, oncotype score of 26 and MSI-low stable... not sure if that all really matter in big scheme of things..so 2500mg of Xeloda hopefully, is sufficient..I will share that I spoke with pharmacist and she said lots of folks go down to 2500mg...oh well, one day at the time! Best wishes to you all...

rp1954
Posts: 1325
Joined: Mon Jun 13, 2011 1:13 am

Re: New member with Xeloda question for Stage II

Postby rp1954 » Tue May 15, 2018 7:34 pm

Here are some possibilities.
- It's possible that you have DPD inhibition (genetic or chemically induced) which makes 5FU more potent, where lower doses act like higher doses in other people.
- It is possible that you have toxicity associated with folic acid or some drugs. Toxicity means it harms you, often much more than it harms the cancer. Many americans are exposed to high (any) amounts of folic acid that they process poorly (vs natural type folates) and that extraneous folic acid really bites them with 5FU drugs.

There are common drugs and nutrients that may enhance the performance of 5FU drugs, particularly of people with associated characteristics or markers, often common in CRC patients or the general population.

The nutrients may also have benefits that ameliorate the side effects of chemo and/or cancer.

My wife took cimetidine for many years based on her CA199 and CSLEX1 markers. Although aspirin has a cancer marker, we just applied it baby aspirin style. Enriched flours/supplement borne folic acid almost knocked her off chemo; natural folates (and other nutrients) in liver (spread) helps, -ed her a lot while on chemo. Based on various clinical and research papers, lab tests and markers, I believe the menatetrenone human form vitamin K2, vitamin D3, IV vitamin C, PSK and WGP both improved her general health and improved her cancer inhibition. These have companion or targetable markers. Sometimes they may need companion nutrients for common deficiencies or optimization.

We improved her chemo intensity enough to avoid other chemo drugs beyond a 5FU prodrug. We reduced her oral chemo's toxicity enough to use it daily for almost 8 solid years, without most of the common side effects.

The overall trend of papers that I have read with respect to stage 2 and 3 colon cancer patients is that some form of (personalized and especially useful) chemo intensity matters most, rather than long duration.

Conversely, after chemo, some nutrients or supplements may be useful long term to avoid or minimize conditions that encourage cancer cells growth, survival or induction.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Teddybear
Posts: 29
Joined: Sun Feb 11, 2018 3:23 pm

Re: New member with Xeloda question for Stage II

Postby Teddybear » Wed May 16, 2018 5:14 pm

Another stage 2 trying to manage/understand dosage of Xeloda. I have posted a few times here and received great advice from the kindest people. Because stage two is a gray area we are told there is no real database for us. Leaving us to decide treatment based on the assumption you should be cured after surgery, but maybe not. After hearing this you ask the oncologist what should I do and the usual answer is they just don’t know.
For support, I propose we become our own non scientific reference group to answer the question I think most 2’s and some 3’s want to know.
1. What was your risk factors, did you take treatment, what kind, dose, duration and have you had a recurrence?

I am NOT suggesting this to act as medical advice, just support only. I know we have a few posters that are stage 2 on this site and they are Awesome! Always generous with their time to respond. Just trying to include more !

My story so far is short. Screening colonoscopy found cc tumor in sigmoid area. Removed with Laproscopic surgery with no complications. No high risk features and ct scan clear. I did oncogene dx testing as score was 14. Stats in signature. I decided to take Xeloda for 6 months.

Finished cycle 1of 8 /Xeloda 4000mg, on day 9 of cycle 2 oncologist stopped treatment until next week because of hand and foot.

Looking forward to hearing your story.
DX CC Feb 2018
Feb 2018 Lap sigmoind resection
2A
T3N0M0/G2
0/14 nodes
no invasion
Margins clear
MSS
April-June 2018 Xeloda

ocgross10
Posts: 4
Joined: Sun May 13, 2018 1:26 pm

Re: New member with Xeloda question for Stage II

Postby ocgross10 » Fri May 25, 2018 5:06 pm

Thanks all for such wonderful info and advice...my colon cancer was right sided, found relatively early, I'm told but T3 and MSS made Xeloda decision....I've eliminated multiple vitamins with Folic...and have increased B12 to 2000mcg daily..helps with neuropathy...I want to share what my Oncologist said about reduced dosage...I have to remain at that dosage due to blood clots but she said anything above 2000mg is ok..lets continue to support each other with information...Stage 2 is different!

Beckster
Posts: 257
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New member with Xeloda question for Stage II

Postby Beckster » Fri May 25, 2018 5:59 pm

ocgross10 wrote:Thanks all for such wonderful info and advice...my colon cancer was right sided, found relatively early, I'm told but T3 and MSS made Xeloda decision....I've eliminated multiple vitamins with Folic...and have increased B12 to 2000mcg daily..helps with neuropathy...I want to share what my Oncologist said about reduced dosage...I have to remain at that dosage due to blood clots but she said anything above 2000mg is ok..lets continue to support each other with information...Stage 2 is different!



Yes..Stage 2 is the forgotten child! They do not know what to do with us :D ! Being your "right sided" twin....let me know if you have any questions or concerns while on Xeloda. It took until my 4th cycle for it to become my new "normal". Hang in there!

Beckster
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 (pre-op)
TNM: T3N0M0/IIA
lymph nodes: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
Clear Colonoscopy 10/17 :D

teachpdx
Posts: 608
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: New member with Xeloda question for Stage II

Postby teachpdx » Mon May 28, 2018 6:27 pm

I had a bad case of HFS. It was so painful to touch and walk. I wore cotton gloves to protect my hands and soft wool socks on my feet. Lotions did nothing for my HFS & in fact made my feet feel hotter.

Everyone experiences chemo differently. My HFS (neuropathy - dr's words) took 3 years to go away implying that nerves were damaged & regrowing.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

Beckster
Posts: 257
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: New member with Xeloda question for Stage II

Postby Beckster » Mon May 28, 2018 6:42 pm

teachpdx wrote:I had a bad case of HFS. It was so painful to touch and walk. I wore cotton gloves to protect my hands and soft wool socks on my feet. Lotions did nothing for my HFS & in fact made my feet feel hotter.

Everyone experiences chemo differently. My HFS (neuropathy - dr's words) took 3 years to go away implying that nerves were damaged & regrowing.


This is very interesting.... I had HFS really bad too. My hands and feet turned very dark and the bottom of my feet peeled. I am 1 year out of chemo and still experience burning at the bottom of my feet sometimes, especially if they get hot. The palms of my hands sometimes become sensitive too. I am glad to know that I am not the only one. I thought that something was wrong and was ready to go to the foot dr.
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 (pre-op)
TNM: T3N0M0/IIA
lymph nodes: 0/24
LVI present
Surgical margins: clear
MSS
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17, 12/12/17, 6/18/17 CT Scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8 12/17-2.8, 3/17-3.1, 6/17-3.0
Clear Colonoscopy 10/17 :D

ocgross10
Posts: 4
Joined: Sun May 13, 2018 1:26 pm

Re: New member with Xeloda question for Stage II

Postby ocgross10 » Tue May 29, 2018 9:27 pm

I think Stage 2 CC patients need to really be informed...the neuropathy is bad but thanks, Beckster for your reply.....glad to know it may go away, makes me feel better... have any of you Stage 2 folks like me, had the Oncotype testing done...mine was 26 and that helped determine need for Xeloda..according to my Oncologist....I've read much about the real validity of this test...will be interested in hearing any of your inputs...as always, thanks all...this is so overwhelming and the uncertainty very unsettling to say the least!


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