The Colon Club

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!

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

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.

I was on FOLFIRI and I developed joint pain and stiffness - I'm sure that it was from chemo

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.

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.

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.

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!

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.

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