All about Xeloda

@intolight - Hi, I had mentioned to @marcials1 that I was told to have more salt (due to low electrolytes), and that that was a rare thing, as most are told to lighten up on the salt. I mentioned that I had noticed that you too, were told to consume more salt (for a different reason, I know), and that it was an interesting thing again, since most are told to lessen their salt intake. That's why she brought your situation up here. Here's hoping we both benefit from the increase!

hi @intolight good to hear from you! How many weeks total are you on Taxol? I hope it is kind to you and works for you.

Yeah the sodium issue is strange. I had minor heart issues a few years ago. Thought to be related to seizures I was having. I have been on seizure meds for about 3 years and the heart issues are under control. Interesting about what you found about Salt helping the body absorb water. That makes sense. My low sodium issue seems to not be a big deal…low but my oncologist has never addressed it. I do use a lot more salt now and I hope it helps my water intake. I was taking Colace for awhile but I think I have it under control. For now! Best of luck to you going forward.

Hi @marcials1 My Taxol dosage is 2 weeks on and 1 week off. I will be on it until it stops working unless God performs a miracle as I am Stage IV. I started it in January. Right now the only thing that lights up is my liver although they are watching a few bone spots that currently don't show any activity. I haven't got things under control yet either with Colace or salt although I can get things to move. I know I don't eat enough roughage so I am working on adding that too. The past few days I have been dealing with a lot of gut pain. Zofran helps but I also sometimes take Pepto Bismal which I keep in my purse.

Just saw my orthopedist and my leg is healing well. I can slowly stop wearing the brace and don't need it in bed anymore. She said it would take me three or four months to completely heal so I just need to be careful. I can see the new bone growth on the x-rays which is a good sign. I have enough good movement she doubts I will need PT although she will keep watching it.

@intolight Ok I wasn’t sure if you had a set time you would be on Taxol. I am stage IV also; thinking most of us here are. Guessing.
I am off Colace right now but I do not count on that being the case forever. Regarding Zofran I took it for a week or two as needed and it helped with nausea but then I had really bad stomach pain. Was guessing from Zofran. I’m not sure. I also read on here somewhere that Zofran is not meant for our MBC type of stomach issues. I am not sure at this point but I think anything that helps any of us as individuals is what we need to go with.
Great news on your leg healing! Please be careful!

@marcials1 hi I am starting cycle 4 on Thursday and am on 7/7. The last couple of weeks I have had good energy and no fatigue which of course is great. @threetree hi no I haven’t experienced the muscle thing but then again besides walking I am not doing any other exercise. I do still have tingly slightly puffy feet. I hope you are doing a bit better now.

@chico thanks for the info. And so happy that you’re having good energy!

Good Wednesday morning and thanks so much to all of you for offering your experiences re muscle and joint pain on Xeloda. I'm having probably the worst "week off" I've had yet, and it's mostly all this muscle and joint soreness that's so bad, I can't seem to do my PT exercises. I only briefly mentioned muscle soreness to my onc a couple of months ago, and he said that Xeloda has no "direct" effect on muscles. He's real technical however, and I think he was being super technical then, and that the drug does have at least "indirect" effects on muscles and joints. I read somewhere online that the drug hampers some kind of mitochondria from making proteins that help muscles recover after being used and sore. I also found this AI overview when I posed the question about can Xeloda cause all these problems I've been having this week:

During the off week of a Xeloda (capecitabine) cycle, residual joint and muscle stiffness can range from mild discomfort to significant, heavy body aches. While the off week is meant for recovery and many acute symptoms start to clear, cumulative fatigue and lingering inflammatory responses can make your body feel notably stiff, heavy, or sore, particularly during the first few days of the break. [1, 2, 3]What to Expect During the Off Week

• Lingering Aches: Joint pain (arthralgia) and muscle stiffness (myalgia) can persist or even feel more prominent as the drug clears and your body attempts to repair. [1, 2, 3]
• Delayed Peak Effects: Side effects do not always switch off instantly; cumulative strain from the active week often peaks right as the break begins. [1, 2]
• Hand-Foot Realities: Skin tightness or soreness on the palms and soles can remain tender, limiting smooth movement or stretching early in the off

Like @cookie54 has said, I just can't tell what's causing what. I don't know if this is just part of the general fatigue, or if it's truly a less common, but real, side effect of the drug - the wildfire smoke and warmer and more humid weather might be contributing also. Some of what I've been experiencing is also real similar to what I get when I'm low on electrolytes, so I've been eating a lot of sodium and potassium rich food, along with having some electrolyte drinks. I'm seeing the onc next week and will bring all this up with him again. I did message his office about just how much of a dose reduction he had been considering and they say he was thinking of having me go from 3000 mg a day down to 2700 mg a day. I haven't seen anyone here who went from 3000 to 2700. Most seem to have gone directly to 2500. @chico, you seem to have gone to 2600. Just how much of a difference does a reduction at this level help? I want to do something to help with the fatigue and muscle soreness, but don't want to compromise the efficacy.

I'm supposed to see the PT tomorrow, and I'm going to have to tell him I haven't been able to do anything meaningul all week. I'm going to ask him if he has seen anything similar in his work.

Well, I'm sorry I haven't gotten back to so many of you individually - I've just been so wiped out this week. I hope all of you are feeling reasonably well and continuing to enjoy the nicer and more pleasant aspects of life in the summer.

@chico - Thank you very much for your information and advice. I'm glad to hear that the reduction for you made such a big difference. I've read where some say it didn't make much difference at all. I'm thinking about giving it a try now though, after what I've been through this week; although this could be a "one off" and never happen again. I also have to remember how many things I read says that the "off week" can be worse than the "on week". It's sure been that way for me this week, but isn't usually. I appreciate your recommendation that I take the reduction. Apparently there's no difference in effectiveness with the 3000 mg a day switch to 2700 mg a day, so maybe I could just start with that, and see how it goes.

Hi is anyone here taking Zometa infusions? I had started and then quit about a year ago. My PA yesterday told me, which I had never been told before by my oncologist, not only does Zometa help strengthen bones, but it also works to fight the spread of the cancer within the bones that are metastatic active. News to me. Any thoughts? Thanks…..

@marcials1 Yes, my original onc in California and my new one here in Colorado both told me zometa also helps fight the spread also. I have been on it for 10 years, since orignal dx, although now I only get it every six months. I broke my leg on July 9th, had a dexa scan the following week (already scheduled) and the scan reported as normal so perhaps it works as I am also stable with bone mets. I just fell really hard.

@marcials1 - First, I want to congratulate you on stable scans and the lower tumor markers! That's always such a good sight to see!

Yes, this has been a weird week and got me concerned. Glad you found the info I posted re muscle/joint soreness interesting. I do wonder about the weather and was hoping to wait until fall to decide about a dose reduction, but I've got too many negatives going on right now, and had to go ahead and do it now. Re the electrolytes, I had wondered if that was my problem, but electrolytes don't cause big time joint pain, and the muscle pain is more crampy and twitchy. This is real strong on joint pain, and my muscles haven't been cramping, just sore with lots of general fatigue. Still, I'm having more electrolyte drinks than usual. It's actually hard to initially tell the difference between the electrolyte issue and this muscle/joint thing. I've also wondered if it isn't both. I get another blood draw toward the end of next week. Maybe that will show something.

Like @chico, I will be on 2600 mg a day with this reduction. The onc had said 2700, but they don't seem to have pills to get that combination. A courier is bringing some 150's to add to my 500's sometime this morning, so this will be my first day on the lowered dose. Fingers crossed!

Re the Zometa, I did it for about 2 years (stopped about a year ago now), and it was my understanding that it could slow bone progression in addition to strengthening bones. Odd though, one of the reasons my onc stopped it (it's on hold for possible future use), was because I had bone progression while on it. I would think that might not have been unusual since they say it "slows" progression, not "stops" progression in bones. I assumed it was "slow progression" and that's what the onc called it. He also pulled it because I had bothersome side effects. That was also the last run I had on the Verzenio and Faslodex; made the switch to Xeloda in January.

@aj so sorry you are facing all these scans. I know most of us have to go through this regularly so we really get where you are at. Like you I won’t do iv chemo so for me this 4th line could be my last line however it is worth looking out for trials. My 1st line was on a trial and it was wonderful as you are so well looked after. There were lots of exciting things happening in the USA so it may be worth researching now. Thinking of you 🤞🏻

@aj I too am sorry to hear about tumor markers going up. Are you being checked for a mutation? Both times I have had to switch to new meds it has been because of a mutation. Maybe that is always the case for all of us? I need to look into that. Also, when I went onto X, my oncologist told me there there are still other treatments after this, before going to IV chemo . I also said I would never do it either, but I think I would give it a try before I absolutely rule it out. Also, as mentioned, have you asked about any clinical trials? Do you have sny new symptoms tgat you have noticed? My numbers were skyrocketing after my last line of treatment but have now gone down on X, so whatever your next treatment may be, those numbers may go down drastically. Please keep a positive attitude with your scans coming up. Will be thinking of you. Big hugs.

Yes, I have been tested for mutations and I have none. I don’t want IV chemo but I’d try it anyway. I also have a referral to Fred Hutch cancer center (where threetree gets treatment) that I can take advantage of if I want. My oncologist encouraged it. And here I am worrying about stuff that hasn’t happened yet! I’m just going to try to hold off until I get the scan results. Maybe it’s all ok.

@threetree If I am reading this forum correctly, I'm sorry no one responded to you since June! I just stumbled onto this and your post resonated with me, so thank you for sending the message out to the ether! I just started back up on Xeloda in July. I was on it for 1 year - July 2023-August 2024. I'm ER-, HR+ with tumors in the intercostal ribcage - metastatic DX in 2022.

After a spring scan showed 2 tumors back in the original spot on my ribs, I started back on Xeloda in a 7/7 cycle - just finished 3rd round @ 3000mg/day. I have been experiencing the same fatigue you are feeling, but without the migraines…just regular headaches, not debilitating. So far, my worst days are days 6-9 where I feel someone just turned up the dial to increase gravitational force.

Cycle 1 I was tired and just meh. Cycle 2 brought the depression. Cycle 3 seems a little better, although now the HFS is starting to manifest itself. I made a conscious effort to exercise more and that seems to help. Gentle exercise. I have also been watching my thoughts. So far, I have noticed that I imagine that other people are criticizing my laziness. Yesterday I told my husband that I was going to take it easy since it was day #7. He was sweet and asked what he could do for me. I reminded myself that I was projecting these the judgments and that it is none of my business what other people think of me! That worked for a bit, but then by the afternoon I was feeling really anxious, like I was forgetting a deadline. I got on my recumbent bike in the basement for 35 minutes of really gentle movement, pushing my HR to 110 max (vigorous for me should be in the 130's). I followed that with 15 minutes of stretching and that helped. I just wrote a reminder for myself 2 weeks from now that this fatigue is real and it is the body's message that it's working extra hard behind-the-scenes to wipe out these tumors.

As far as the crying goes and missing those who are gone, I especially think of my mom and her love. I miss her so much, but feel so fortunate I can tap into those memories for comfort.

Please don't apologize for the lengthy post! I am right there with you with the foggy brain & difficulty in focusing to make a point.

Healing hugs and energy to you! —Anne