All about Xeloda
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Thanks so much @threetree and yes, this was my 1st time posting. They started me in September 2022 on Ibrance, so I was on that for 7-8 months before switching to Xeloda since the Ibrance kept making me neutropenic. A scan after 1 year on Xeloda revealed NED (I had to look up that abbreviation this morning), so I had 2 years of remission with just Exemestane every day. A June 2026 scan showed 2 tumors back in the original spot on my ribcage. (The original original was in my left breast in 2018).
It's helpful to know the fatigue is not in my head, so I'm glad I landed here! I look forward to hearing if the muscle & joint pain subsides.
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@annieliz63 welcome to this group. We don’t want to be here I know but in our positions it’s a really good place to be. The information here from the women commenting gets me through some crazy stuff! Sorry to hear you are in the fatigue club. It is really hard sometimes. Don’t let anyone or yourself get you down on napping and taking breaks. It has nothing to do with laziness! Did you have tge same s/e when on X in the past? On the HFS I use Utterly Smooth daily and this s/e is very manageable fir me. I hope to be in this X for as long as possible. It is my third line of treatment. Unless I am forgetting one….chemo brain. I get really foggy sometimes. But overall I am grateful. So
if you have any questions or just want to share thoughts just jump in here!2 -
@annieliz63 welcome to Xeloda land. I get that fatigue and feel guilty about not doing much. Some days I do great and some not so much.
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hi Xeloda ladies. I think I’ve seen some of you say that you get a rash on X? I don’t see it listed as a side effect but I feel like I’ve seen some of you say that you’ve gotten a rash. If so, what is it like and what works to get rid of it?
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@marcials1 hi I did have a rash on my arms caused by not wearing sunscreen during the very sunny hot weather. It took a little to disappear but I now cover my arms and all is ok.
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I have a question about heartburn. I've read that Xeloda can cause heartburn, and I'm wondering if I have it. Several doctors have suggested to me over the years that temporary issues I've had were heartburn, but I've never been able to "connect" with that; it's never jived with me or what I've felt. Lately, I've been having a lot of chest pain and more (I do not think it is heart related), and am wondering about heartburn again. I just don't know what it's like to have it, so can't pinpoint my symptoms. About two years ago and ENT told me he thought I had "silent reflux" or "LPR". None of the over the counter or prescription stuff has ever made much, if any, of a difference in my symptoms. Do any of you have heartburn that you might think is especially Xeloda related? Thanks.
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@threetree I had a very short bout of heartburn a few weeks ago. Before I got put on my new schedule. I was going back-and-forth between nausea meds (Zofran) and heartburn/antacid (Prilosec). Between taking the two I ended up causing a big problem for my stomach. Lots of stomach pain for about a week. So I quit them both. I will only take either of them if I absolutely need to and so far I have not needed to.Mine was definitely in center of chest and esophagus. It was definitely more painful than any heartburn I’d had in the past before being on X. Is your chest pain in center? Please follow up on this!
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@marcials1 , my oncologist told me not to take Prilosec because it reduces the effectiveness of Xeloda. Take Pepcid instead. I get heartburn and gastric reflux from Xeloda and it seems to help.
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wow @aj interesting! Thank you for that. I actually take omeprazole which apparently is just the prescription form of the over-the-counter Prilosec. I did look up interactions of medications when I first was prescribed this med and it said it did interfere mildly with X. I am sort of pissed off at my oncologist now.
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@marcials1 and @aj - Thank you both for your heartburn information. I tried Pepcid and it didn't really help, but my oncologist is thinking now that acid reflux isn't my likely problem. I don't think I could ever do Omeprazole/Prilosec type drugs. My job used to involve checking on people in nursing homes, adult family homes, etc., and I just saw too much omeprazole! I don't want to go into a lot of detail about my job here, but that drug just wouldn't be for me, but apparently it does help many, so I will let it be at that. I told my oncologist what was going on and now he's thinking that reflux might not be my issue, although I will say I've noticed more stomach queasiness since taking this drug, and I understand it does cause heartburn.
I'm still dealing with all my muscle pain (upper back, shoulders, neck, etc., causing headaches and lightheadedness. Saw my oncologist on Thursday and he wants an "urgent" brain MRI! I'm going to get it tomorrow afternoon, because that was the only available time until October - sheesh! He says he doesn't really expect to see anything, but wants to rule out any brain problems, and that it is the lightheadedness that has him concerned. My personal guess is still that it is a muslce, maybe pinced nerve kind of thing, or musles and my old spinal fractures acting up. My labs were good, so this one doesn't look like electrolytes. I understand that the drug can cause all this stiffness and soreness in muscles, and aggravate some nerves in the process. I just hope that whatever is going on, it doesn't mean I have to quit the Xeloda. Just like @aj I do not want to do IV chemo, but would give it an initial try if that was all that was left.
And @aj I am sorry to hear that you've got some progression. Slow is a "plus" however, and just maybe some radiation will do the trick and you can keep on with things as they otherwise are. My progression with the Verzenio/Fulvestrant was very slow, and the oncologist said that was good and that usually when things go slowly, they stay that way (as a broad and general rule).
Fingers crossed 🤞 that the radiation and some time is all you need!
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@threetree I’m glad that your doc ordered a brain MRI. Let us know how it goes. I get them every 3 months and have gotten quite used to them. And yes, I think my cancer in general is slow growing.
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@aj - Thanks for your support. I will be sure and report how things go. I've only ever had one other brain MRI, back in the fall of 2018 when I was diagnosed and there was nothing there. I like to think that the same thing will happen with this one tomorrow, and that at least brain problems can be ruled out. Wow, you get these every 3 months and actually feel like your used to them. That's amazing. I'm not too bad with MRI's if they have headphones and can play 60's Motown.
@marcials1 - Yes, the pain I get also includes center chest and esophogus area. Just kind of mid torso, front and back, and then up the neck and onto my shoulders; causing headaches and lightheadedness. It seems like there are a lot of things that bring on those kinds of symptoms. I'm even wondering about my sleeping now. My pillow is really old, and when I think about it, it started to get real soft and flat and limp, around the same time I started the drug. I've been looking at pillows online and I see that the reviews often include people mentioning that same pain syndrome of chest, upper back, neck, and shoulders. One of the bigges things I hate about this cancer business is not being able to sort out just what is causing what. It drives me crazy!
Well I'm hoping for the best tomorrow but now have more scanxiety of course. Ugh!
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@threetree Thinking of you hope all goes smoothly with MR and all is quiet 🤞🏻❤️
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@cookie54 - Thanks so much for the good thoughts. I'm going a little later this morning (Pacific time). Frankly, I will be shocked if they do see anything. My regular CT and bone scans last month were fine and my labs from last Thursday were all fine too. Everything has been stable. Looking down at one's phone and computer in excess can also apparently bring on all these same symptoms too - so even one more possibility. I'd been working with PT on that basis, but I had to cancel my last PT appointment, because I couldn't even begin to do any of the exercises, because of these already super sore muscles. My muscles just don't seem to want to recover after being exercised, they just stay sore. I have read where the drug can be involved with something like that; causing very slow muscle recovery, so who knows? (There's all my scanxiety rearing it's head.)
Thanks again, Cookie 😊,and I will get back with everyone later.
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I am so far behind here with so much to read. Just wanted to mention that Prilosec was a definite NO with Xeloda. This came from my oncologist, PCP and specialty pharmacist.
So I am on Famotidine.
I have had sores on my tongue for about 5 months and my onc lowered my Xeloda to 2000 a day at 7/7. And my tongue is better. Kind of scares me though, to take such a low dose.
More later….need to catch up.
Denise
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Got my brain MRI results back last night, and they indicate that there is no evidence at all of any cancer in my brain, so very, very happy for that of course. They said they just saw "normal aging" signs, i.e. some brain cell loss.
Here's to a good day for all!
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@threetree having a NED brain scan result is such wonderful news. I do hope this gives you some relief and a boost going in to the new season.
I also hope that you @eleanora are finding that the lower dose is working for you.
As always good to see you @denny back posting and sharing your great knowledge with us.
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@threetree Awesome news on your CT! Now we need your muscles to feel a bit better soon🤞
@denny123 Ugh the mouth sores can be brutal glad you're getting relief. I agree I was scared to go on such a low dose also. It took a couple good scans to feel a bit more comfortable. Wishing you continued success with X.
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@threetree - yay for good results from your MRI ! Brain mets are one of my biggest fears.
@cookie54 - thanks! I have a CT scan coming in a few weeks, so I will be very anxious to see the results.
I have had my Cpap machine for almost a year and that can dry out my mouth. So that probably doesn't help with the mouth sores. I hate the machine with a passion, but it's better than having a stroke or heart attack. I only use it for the prescribed 4 hours a night though. My dr said that if I lose 20 pounds, I might not need the machine anymore. But that would take me down to my weight in my 20's, and I have lost any will power that I used to have.
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@chico - Thanks so much for the congrats re the clean brain MRI; and yes, it definitely gives me a boost for the coming season. My understanding was that the oncologist ordered it more to rule any possibility of brain trouble out, more than because he actually thought there was something there. It's great news either way!
@cookie54 - I appreciate the good thoughts re this brain MRI - it was scary! Yes, now for the muscles and joints. I do really think there is a weather component to that, because we are experiencing some real low pressure these last few days, and a big change into fall, and I swear every joint in my body is hurting - still just need to see if the drug is making this so much worse than normal. Hope things are going really well for you, and that you too are enjoying some of these "signs of the season" and the shift into fall.
@denny123 - Nice to see you back here, and thanks for the good wishes. I totally agree that brain mets are a huge fear, and I was really freaked out that the oncologist saw any reason at all to check for them. Both you and Cookie are brave to have tried the 2000 mg level. I don't know if I could go that low or not, no matter what kinds of side effects I might be having, but you two are both a big inspiration in that regard. I sure hope you can get those mouth sores under control - sending positive thoughts your way for that issue for sure.
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Hello everyone. Wanted to get your input in managing hand-foot syndrome from Xeloda.
My hands start to become more red, sensitive to touch, itchy, and feeling “thick”. I have been limiting folate-rich foods intake and been moisturizing (probably not often as I should). I have been prescribed with Voltaren cream, which I have not used yet.
Any other ways you have found helpful? Thanks a lot!
EL
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@vajra13 Sorry you're starting to feel the side effects associated with X. Here are the products I have used over the years:
Udderly Smooth, Aquaphor, Bag Balm, Neutrogena Norwegian Swiss Hand Formula I also had a short stint with Voltaren but I didn't really see a great improvement. Everyone is different so you will see what works for you. Aquaphor and Bag Balm are very greasy so I use them when I have socks on or white cotton gloves on at night.The other two absorb well so they are my favorite's for daily use.Hope you find something that gives you relief.
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Hi Everyone. This is my first post but I started Xeloda in July so of course looking for any tidbits and information that can help my journey. A little about me I was diagnosed in 2018 De Novo with MBC. What a terrible shock. I had very extensive bone mets to almost my entire skeletal system. That hasn't changed but throughout the years the bone mets vary from sclerotic to lytic. I always seem to have a fair amount of lytic(active) so have learned to live with a certain amount of pain. I had great success with Ibrance and Femara for 5 years and it was a wonderfully easy treatment for me. Then Everolimus and Exemestane for 2 1/2 years followed by Truqap for 8 months and now Xeloda. I live in Canada so many drug options that come onboard aren't available to me as we have a Government funded healthcare which means cancer drugs are free but limited. Until July of this year I stayed bone only mets and was shocked by the PET scan results in July that showed I then had 3 liver lesions. So then Xeloda was the drug of choice. After having the bloodwork to check for the DPD enzyme deficiency again I was shocked to discover that I indeed had the partial deficiency. With this in mind my oncologist started me on a low dose of 850mg twice daily, 7 days on/7 days off. In the first cycle(month) my only side effect was heartburn which was not normal for me. My oncologist said that the PPI's on the market can interfere with the effectiveness of Xeloda so instead started me on Famotidine which has worked wonders. I stopped my multivitamin as my oncologist said to avoid anything that had added folic acid. After the first cycle she increased my dose up to 950mg twice daily 7/7 and I just finished my first cycle of that with no added side effects. I am diligent with moisturizing my hands and feet using Voltaren/Udderly Smooth with Urea on my feet at night with cotton socks and various creams multiple times throughout the day to my hands. So far no HFS. I started at the beginning of this post and read many of them which was very informative. Thought it was time for me to jump in and introduce myself. I had a bone scan this past Friday which showed stable results and my tumor marker dropped 50 points so hopefully that is a sign the treatment is working. Of course being on such a low dose makes my brain wonder if it is working. My next PET scan is in October so I will be quite anxiously awaiting those results. Thanks for stating this dedicated post to Xeloda. It's the last oral treatment option available to me so I really want it to work for a long time. I'll see my oncologist next week and she likely will increase my dose up to 1000mg twice daily 7/7. She is very cautious at increasing with my enzyme deficiency so I am thankful for that. SH
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Hi @girlsptz, welcome to Breastcancer.org the Xeloda discussion! Thank you for sharing your story and all the details about your experience so far. It’s great to hear that you’re tolerating the Xeloda well and that your bone scan is stable and tumor marker has dropped. We hope you’ll continue to share updates as you go, especially after your October PET scan. Wishing you the very best with this treatment! 🤗
The Mods
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