Xeloda joint and muscle pain/arthritis

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ktwmn
Posts: 336
Joined: Tue Aug 02, 2011 9:41 am

Xeloda joint and muscle pain/arthritis

Postby ktwmn » Wed Jun 07, 2017 2:19 pm

To those of you who have taken xeloda (capecitabine), have you had significant muscular and joint pain?

I've been taking xeloda since October. After exercise the pain is particularly noticeable, much moreso than usual muscle fatigue, in knees, hips, elbows, back. Even after sitting in a meeting too long my butt will get sore. For the first few months of taking xeloda the pain would decrease during the week off, usually after a few days of peeing frequently (I attributed it to fluid retention while taking xeloda, I figured that was causing the joint pain). Due to other problems (diarrhea) I've had the dosage lowered to 1000 mg twice a day, and one week on/one week off. However, the joint and muscle pain now seems to not go away during the off week.

I also gained 15 pounds since October, possibly another side effect (it's not ascites according to scans), perhaps arthritis due to having to carry around 15 extra lbs.?

How common is this? Will I have to feel like an 85 year old as long as I continue to take this?

Any input, observations, etc. welcomed!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

Beckster
Posts: 176
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Xeloda joint and muscle pain/arthritis

Postby Beckster » Wed Jun 07, 2017 2:25 pm

I have been on Xeloda since January 2nd, 3000 mg a day (3 pills in the morning and 3 pills in the evening). Yes, I do have some joint pain, especially after resting for a period of time of when I get out of bed first thing in the morning. In addition, I gained 10 pounds! My tongue has a burning feeling and I have hand/foot.
I am finished my 8th cycle in 2 days!

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
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D

rp1954
Posts: 1192
Joined: Mon Jun 13, 2011 1:13 am

Re: Xeloda joint and muscle pain/arthritis

Postby rp1954 » Wed Jun 07, 2017 2:52 pm

A lot of 5FU related tissue breakdown and pain, including joints, is overcome with supplements. Big (IV) C, D3, K2, glucosamine, fish oil, boswellia, curcumin, and a good basic orthomolecular supplement formula are things I would be asking my natural internal medicine doctor about if you're on xeloda alone. My wife used to have these problems before chemo and then added chemo...

Of course there are all those controversies... However, done right, they should help chemo kill cancer cells and yet protect or improve the rest of your body. The problem I see for most people with supplements are fractional measures and wrong molecules.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

michelle c
Posts: 1845
Joined: Wed Dec 02, 2009 3:58 am

Re: Xeloda joint and muscle pain/arthritis

Postby michelle c » Sat Jun 10, 2017 3:36 am

I was on FOLFIRI and I developed joint pain and stiffness - I'm sure that it was from chemo
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

Bryher
Posts: 2
Joined: Sun Jun 11, 2017 12:52 am

Re: Xeloda joint and muscle pain/arthritis

Postby Bryher » Sun Jun 11, 2017 1:34 am

Hi there.
Just joined today! Am British living in Holland. Had rectal cancer 2016, spent one month in hospital as had leakage and colostomy. Lots of pain but found out about Astym Treatment in the States and am having this here - really wonderful treatment and am pain free from surgical scars - maybe it is worth looking at for you - in is just a special massage treatment of tissues. Very good luck.

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spinnz
Posts: 68
Joined: Sat Dec 05, 2015 4:19 pm
Facebook Username: Diana Wiseley

Re: Xeloda joint and muscle pain/arthritis

Postby spinnz » Mon Jun 12, 2017 3:12 pm

Hi there, I had mild osteoarthritis before my treatment and now it's much worse. I've also been diagnosed with fibromyalgia. I'm treating both with yoga and by taking advantage of the new law passed in Ohio regarding medical cannabis. I notice symptoms most when I'm sedentary for too long.
Dx age 53 10/8/15
Lap/robotic converted to open sigmoid colectomy, partial small-bowel resection and right salpingo-oophorectomy 10-9-15
CRC stage 3b, T3N1aM0
Margins clear of malignancy
1/27 lymph nodes
Well differentiated
CAT / MRI's indicate NED
dual lumen power port placement 11-4-15, removed 1/16, too big!
FOLFOX + Neulasta- 2 rounds 11/15
5-FU/Lev+ Neulasta 1 round 12/15, liver enzymes high
Xeloda, 1 week on 1 week off 1/16- 5/16
Pre chemo CEA 7
1/5/16 CEA 1.0, 5/16, 1.0
Factor 13-bleeding disorder

behconsult
Posts: 218
Joined: Fri Jul 04, 2014 4:53 pm

Re: Xeloda joint and muscle pain/arthritis

Postby behconsult » Thu Jun 15, 2017 8:01 pm

At my age it is hard to tell if it is genetics or chemo however my joints hurt like hell and walk funny most of the time. I believe the chemo is beating my body up.
Stage 3B Age 52
T4; 2/16; spot on perit
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 three spots- Collapsed lung/chest tube 5/17. One more spot to go.

User avatar
ktwmn
Posts: 336
Joined: Tue Aug 02, 2011 9:41 am

Re: Xeloda joint and muscle pain/arthritis

Postby ktwmn » Fri Jun 16, 2017 8:42 pm

Thanks for all your replies, it's good to know others have experienced similar! There seems to be a correlation with constipation/fluid retention cycles while taking this. And some cycles are worse than others. Right now the joint pain has lessened after 24 hrs of peeing and pooping frequently (the last xeloda this time around was on Wednesday). Who knows? Everyone reacts a bit differently to these drugs!
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

B in Canada
Posts: 17
Joined: Sun Dec 07, 2014 12:29 pm

Re: Xeloda joint and muscle pain/arthritis

Postby B in Canada » Sun Jun 18, 2017 12:36 pm

Hi ktwmn, Sorry for the late reply. I had significant joint/athritic pain while I took Xeloda. Below is what I posted about my Xeloda experience which I started the end of Dec.2014. Because I was Colon 2A, it was up to me if I wanted to do 8 cycles Xeloda or not(I forget my dosage: 5 pills in total: ?4/3 big, 1/2 little?)- so I thought I would try. My onc said an exercise/CARDIO regimen would be very good and I thought I could do both when on Xeloda.

" First cycle went fairly well. Felt like I was getting poisoned, with occl stabbing pain in abdomen, nausea, HFS starting. (I was really hoping I would be one of the lucky ones who only has minor problems.) Second cycle: terrible knife-like stabbing pains in abdomen, nausea worse, HFS way worse (the no fingerprints thing was interesting!), nocturnal diarrhea last few nights of cycle/off, all joints of body very sore/achey,could barely function. Went to Onc after second cycle and she said she could put me on 75% dose; I asked if that would make the abdominal pains go away=she said no. (I think she said the pains were bowel spasms.) So then I said I would like to quit Xeloda as I could not function at all; barely make myself swallow the last 3 days of pills in that 2nd cycle. By April my joints were still wonky-went to a Physio and she said talk to my GP about the problem. ANA test high titre and speckled pattern. Guess I got an inflammatory immune response (like an arthritis); Rheumatologist said it is probably from Xeloda and will hopefully go away in time."

I still have arthritic'y problems but not nearly as bad as then. I don't know if I was eventually going to get arthritis in so many joints as I got old, but maybe the Xeloda "triggered" the condition.

Maia posted this when I was considering whether or not to do the Xeloda and I wonder if I had done it together with the Celebrex IF it would also have helped prevent all the joint problems:

"B, since you have decided to take capecitabine (Xeloda), I feel like mentioning two issues.
1. There is an experimental combination of Xeloda plus a NSAID (an anti-arthritic medication: celecoxib (Celebrex)) in Phase II trial, with the idea of try and keep NED status (it's tried also on Stage IV patients). Everything about it has been posted in all the pages in this thread: XCEL-ADAPT trial Phase II -OPEN viewtopic.php?f=1&t=39924 (all the pages)
2. Also, if not for the previous, there is certain literature about the fact that celecoxib (Celebrex) may help to ameliorate an usual side-effect of capecitabine (Xeloda) -hand-foot syndrome."

Also I have read about the increased folate found in flour here in Canada perhaps affecting when on Xeloda & ?5FU. I certainly ate a lot of bread, crackers, etc. when I was feeling nauseous.
Drink LOTS of water and liquids to flush it out as I think towards my last cycle that I could barely finish, I was feeling so sick I was not drinking nearly enough. Also keep active/exercise when you can!!
I hope the rest of your Xeloda/combo chemo goes smoothly with as few side-effects as possible!! Take care.
Positive FIT test Spring 2013(intermittent blood=of course thought it was hemorrhoid) & finally got appt with colo-rectal surgeon Dec.2013 & then colonoscopy Aug. 2014
Sigmoid resection (laparoscopic) Nov. 2014 T3N0M0=colon 2A Female 53 yrs. old
Choice of to take Capecitabine(Xeloda) or not: did 2 rounds and then had to quit due to many side-effects(still have auto-immune/drug-induced arthritis problems)
Colonoscopy Fall 2015(few polyps), Jan 2017(couple polyps); all scans/CEA/monitoring good :D

Beckster
Posts: 176
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Xeloda joint and muscle pain/arthritis

Postby Beckster » Sun Jun 18, 2017 2:58 pm

ktwmn wrote:Thanks for all your replies, it's good to know others have experienced similar! There seems to be a correlation with constipation/fluid retention cycles while taking this. And some cycles are worse than others. Right now the joint pain has lessened after 24 hrs of peeing and pooping frequently (the last xeloda this time around was on Wednesday). Who knows? Everyone reacts a bit differently to these drugs!


You will learn how your body reacts while on and during your off week of Xeldoa. for me, mild constipation when I first start a cycle and by day 10, it turns to frequent bowel movements. During my week off, I will have multiple bowel movements until 2 days before I start the next. I found that back pain, joint pain and feet pain were worse during my week off.

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
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D


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