All about Xeloda

Well, after 6 months of having no real hand/foot trouble, aside from a little redness and occasional "burning", I experienced some more serious stuff the last couple of days. It's been warmer here, but I still wear shoes and socks; sometimes compression socks, when I go for walks. My last three walks seemed to get increasingly difficult for my feet and they became increasingly sore, and finally yesterday evening I was pretty miserable re my feet, and even discovered an actual blister. That got me real concerned, so I put a little alcohol on it to prevent infection, and then tried immediately to "air out" my feet by wearing no shoes or socks, and opening my bedroom window to get a cooler breeze. I suspected the heat might have something to do with it, so I started reading a bit. Sure enough, it looks like heat combined with shoes and socks, and especially compression socks, create conditions that allow more fluid to leak out of your capillaries and into the surrounding tissue, causing more intense problems. It's my understanding that the leaking fluid contains some of the drug. It is the drug leakage that causes the hand/foot problem, and heat just seems to exacerbate it. We've been warmer here, but we rarely get super warm, so I never worry too much about anything like that. I'm including heat now, in addition to the folate problem, as a factor to be careful of when trying to avoid the hand/foot problem. I didn't walk today and have just been barefoot with flip flops on, and so far at least, the daily increasing redness, pain, etc. has stopped getting worse, and I'm just left with the problems I developed previously. Hopefully, I can keep this under control. I am still experiencing and learning so much new about this drug, even after 6 months!

@threetree I haven't been able to go for walks since I started on Xeloda. The first 2 years were miserable since I didn't heed the folic acid warnings. Now my feet don't burn and get infected but I get out of breath too easily to go for walks. Maybe you can eventually accomplish walks and I hope so!

@vajra13 Folic acid in supplements and food interact with Xeloda and you could Google for a detailed explanation. The chemo goes to the smallest capillaries, which are in your hands and feet. I have been on Xeloda for 8.5 years and eat those foods only in moderation and it sure helps.

I saw my oncologist a few days ago and he has cut my dose of 2,500 a day at 7/7 to 2,000 a day. This was because I have had sores on my tongue for 4 months. I do use the Magic mouthwash, but since I am supposed to drink a lot of water, that defeats the mouthwash benefits. My red cells and platelets are always at the lowest possible levels, too. So maybe this will help. My CT scan still shows me as being at NED.

@denny123 - Thanks for describing what you've experienced re walks. Are you saying that even with your dose reductions you can't do walks? I was fine until the weather warmed up a bit and caused my routine seasonal swelling. I have had some of the running out of breath experiences too, but they have been brief and if I just stop for a minute on my walk, I can pretty easily catch my breath again. I did manage a couple more walks over the last few days, but they were shorter, wore me out more, and they didn't make my feet worse, but they didn't help either. This is huge disappointment, as walks have been my true "happy place" during cancer treatments and I can't imagine not being able to take walks. I'm continuing to experiment with different lotion, shoes, socks, and techniques that will make good long walks possible.

@vajra13 - As @chico mentioned, I too avoid any supplements and read labels carefully for any added B9/folate. It's primarily in processed bread, grains, and cereals. I avoid high folate greens like spinach, but I've been relatively OK with lower folate level greens like kale and chard. A local natural foods store here sells a green salad I've bought for years, that is primarily comprised of kale and chard, and initially I thought I'd have to give it up. Then I googled folate levels in various greens, and there are some that are not too bad, and can be fine occasionally. Denny's suggestion of googling for more information is a good one. I frequently google folate levels of various foods to help me make decisions about what I might eat at any given time.

@aj - Has your walking trouble improved? Did you find a way to manage your blisters, etc.? Didn't you get some specialized shoes or something? Are you still on the 3000 mg dose? I know you like to walk too and am hoping that all is well with you in that department.

@denny - That is so unfortunate about your paralyzed nerve that goes to your diaphragm. I think I get breathless because lately I've been trying to add more protein to my diet, so meals are a bit larger than they were, and I'm thinking now, too large. I've been reading that large meals in general, don't go well with capecitabine. For some reason, I'm also having trouble with a bra band. I haven't gained any weight and have no other explanation, but for some reason, as soon as I put on my bra I get sore all around my rib cage, and some of those breathless times also occur. It could again, be these larger meals. Part of my reading says that not only are large meals not good with capecitabine, but also apparently protein digestion can come with a lot of excess bloat. This has been happening since the protein additions to my meals began. I'll just start toying around again with different possibilities I guess. I was convinced that I must have gained weight, but the scale this morning says otherwise.

I'm not surprised that you really enjoyed your walking. It is absolutely the best thing I have going for me since this cancer business started. I wonder if the lightheadedness you experience isn't also from the drug. Even on my outdoor walks, I too get some lightheadedness, but so far it hasn't gotten so bad that I don't think I can manage it. With a treadmill, isn't there usually a bar in front of you that you could hang on to? I could be totally off here, but that could help possibly?

@vajra13 I started by googling the foods that are highest in folic acid, so I eat those only in moderation. For example, iceberg lettuce is fine for salads. And since I grow other kinds of lettuce, I throw some of those leaves in. The dark greens are the worse-spinach, broccoli, etc.

@threetree yeah I can’t walk as much as I used to. Since I’ve slowed down and made many modifications, I haven’t had too much trouble with hfs. I can walk up to 3 miles, sometimes more. It’s not just the hfs but overall fatigue. I go really slowly. I used to love hiking in the mountains but haven’t done that lately. I went to a running shoe store and they fitted me with a better pair but not special shoes. I was also dealing with plantar fasciitis. And feetures socks help the blister thing.

My oncology team said no food is off limits but I did stop taking a multivitamin because of the folic acid. But looking at the list, I don’t over indulge in those foods anyway. Since I took a vacation in February, when I took a three week break, I haven’t had blisters or skin cracks. I moisturize regularly to stay ahead of it. I think we all develop our own systems.

@threetree funny you should mention it, but I went out last night with a friend and seafood. My stomach was not happy.

Cross posting on Mel's and the Xeloda thread: I had scans and blood work done on Thursday and results showed that all is stable with no new lesions at all. Bone sites show "scars" forever, so they still show up, but the liver site that had 10 lesions on it, continues to show nothing at this point. I did have some low sodium and chloride, so they had me go in late yesterday afternoon for an IV drip. Glad I was able to get it done, even though a late "rush job" yesterday afternoon, as the options available over the week-end or on Monday weren't as good. I sure appreciate my trusty friend who was ready and willing to accompany me at the drop of a hat. So far (6 months now) this Xeloda/capecitabine is really doing it's job. Just hope it keeps on for a long, long, long, long time!

Good Saturday morning and best to all!

Hi ladies, I have not been communicating much because X was kicking my ass. Always tired, always nauseas, foggy brain, no energy, etc.

I just wanted to add to the talk about these side effects being all over the place. I started with just a little nausea and being tired. Then I progressed to the hand foot syndrome. And that comes and goes. I’ve had to give up my walking for now because of the foot thing and no energy. I miss it a lot - like you all said it was part of my sanity. I’m going try to work back up to it by starting on my treadmill. I did have this past week for the first time in my three months on X, severe stomach pain. I ate a lot last weekend when I had family in town and I went a little bit crazy and now I think I paid for it the entire past week. I now notice anytime I eat, I get a little bit of a stomach ache even when I have small meals. So I’ll ask my Onc about that next week. I go for all my scans on Tuesday and I’m really curious to see how this drug has worked for me. Does anyone else have a hard time getting sufficient water into their bodies? I can barely get in a few glasses! Any suggestions? I know before my CT I need tons of water or the contrast dye injection is super painful.

I am happy to hear that you are all doing well. As much as we can be! Other than the side effects being do random and unpredictable I do hope to stay on X. Hoping for a dose reduction or 7/7 instead if 14/7.
Anyway just wanted to check in and let you all know I read your posts all the time and you all give me so much information as well as hope and inspiration.

@soldanella Thank you for your kind words. I am hoping for 7/7 too. If more than half of my time on this earth is spent being miserable, I don’t see a point in continuing it. Sorry that does sound really morbid but I can’t help but feel that way when all I do is sleep and feel like a walking blob of nothing. But then again, as we all know, the randomness of the side effects is crazy. I might feel really good in a couple days! Thanks for the good wishes on my scans tomorrow. I used to drink that amount of water as well. Now I can barely get half a liter in my body all day long. Today I took an antacid med that I have been holding off on and it does seem to be helping a lot with both the stomach pain and the ability to drink more water. Thanks for that suggestion! I guess the results from the scans will be a factor in my deciding on what to do next. And then I meet with my oncologist on Friday and that will also have an influence. Or I’m hoping it does at least. Thanks again.

@denny123 - Sorry to read about your toes. Yes, I don't think the folate is the only thing that aggravates the hand/foot issue. I think heat and friction also are risk factors, and that might be what you experienced during your gardening. I had no troubles with hand/foot syndrome during the winter, when I started this drug, or during the spring. Now that summer has come and with it the heat, I'm having some notable hand/foot problems; especially when I take walks on warm days. Just wearing shoes and socks seems to contribute to the problem. All of this, and I don't eat much folate at all. No different from winter and spring in that regard.

On another note, I would be interested in hearing any dose reduction stories anyone would care to share. I am especially interested in how much of a difference it made for people, how long they were on a given dose before a reduction, and any progression information after a dose reduction. I've read where some say their dose reduction didn't make all that much difference, some have said it seemed to help the hand/foot problem, but didn't do much for the fatigue, while yet others say it helped a lot on all fronts, etc. I also read where someone said they went from 3000 mg a day down to 2500 and then progressed in about 2 months. They then went back up to 3000 and re-stabilized and had remained that way for a while.

I saw my onc for a follow-up last week and he is offering a dose reduction, but I actually declined, much as I would have loved to have tried it, primarily out of fear that it might not work as well. I am on 3000 mg a day, and I'm not sure how much of a reduction he was thinking of, but I assume 2500. He said there was a fairly recent study that showed just as much efficacy with the dose he was considering, as there is with 3000 mg, but an ease in side effects. I told him that for now, I'd just stay with what was working, as it wasn't absolutely intolerable, and that maybe we could wait and see another 3 or 6 months. He was fine with that, but now that I'm in the middle of my "on week" again, I'm feeling pretty lousy (super fatigue, brain fog, hand/foot issues), so I'm wondering if I shouldn't have taken him up on his offer.

Anyway and again, I would love to hear about any dose reduction stories that anyone here can share, either personal or about someone else you knew or heard about.,

It's a beautiful day here in the PNW, so please everyone wherever you are, have a really good and pleasant day too!

Good morning everyone. I have followed this thread closely, as my MO mentioned quite a while ago that Xeloda was in her plan for me when progression occurred. I have also followed @threetree on other threads. I felt a companionship as we both had extensive bone mets and were prescribed CDK4/6 drugs at our first progression. I have found hope in @denny123 's posts showing that longevity on this medication is not only possible, but frequently very tolerable. @soldanella's consistent calm and encouragement have been soothing. I haven't posted, as I had no experience to offer with Xeloda. I have also been working through physically and emotionally exhausting family developments which have fortunately resolved well for those concerned except for me with new progression.

After 4+ years on Kisquali and Faslodex, my most recent bone scan showed quite a few new mets as well as activity in formerly sclerotic areas. My MO has prescribed Xeloda at 2500/day - 1500 morning and 1000 evening, 14 days on and 7 days off. She gave me a memo of recommendations to follow during treatment with ABSOLUTELY NO MENTION OF FOLATE! It also said not to use garden tools, kitchen knives or anything else that would require me to press with my hands. Going barefoot in the house, which is something I always do, was also prohibited. Received a phone call yesterday from a young woman (she sounded as though she was in high school) who said she was from the "specialty pharmacy" and calling to advise me on treatment. She repeated all of the admonitions from my MO, but again, not a word about folate. I am overwhelmingly grateful for the wisdom of this group.

I begin taking the pills on 8/7. I have a new tube of voltaren and several moisturizers to try. I've ordered cotton gloves from Amazon and have quite a few pair of cotton socks. Like many of you, I have always found calm and solace in walking outside and have some shoes designed for that which I hope will let me continue that activity which I hope to continue. I look forward to tips and recommendations you can offer as to how to deal with this in the real world.

Eleanora

@denny123

I have no desire to test the folate impact. I absolutely believe you and was horrified that neither my MO in her comments nor in the memo nor the pharmacist mentioned folate. My treatment is at a large cancer center. So glad I have all of you for second opinions! One other unexpected thing I learned is that Xeloda is covered by Medicare Part B rather than my prescription plan.

Hope your toes are healing. I'm a gardener, walker and knitter. All of these activities have offered calm during this horror show. Hope I don't have to give them all up.

Hi all, I have been reading lots of comments this morning. I think one thing we can all agree on is our side effects are all over the place and inconsistent. Some months, bad feet and hands, some times fatigue, sometimes better, sometimes brain fog, other times feeling normal. And also random when they occur or don’t occur. I think the only thing I can control is the the limited folate duet and some of the moisturizing for the hand/foot syndrome. My oncologist and PA was surprised or acted surprised when I mentioned the Folate in the diet. They said they had never heard of that being an issue! What can you do! I try so hard to trust them, but sometimes I just wonder. I just had scans and an MRI on the brain done. They told me my CT scan on bones and abdomen is stable. It is not. I read it. And they told me my brain MRI is negative. It is not. I read it! So, I will just remain, until my next follow up, which is at the end of August. @denny123 I large cancer center as well. I used to feel so comfortable there and trusting. But they have huge. I feel like we’re all treated like cattle just herded through. I just went on Medicare and not one single person could answer if Xelota was covered under part B or part D. So thank you for that information.

I did just change in the timing of my meds. I still take 3000 a day but I go onto the 7/7 plan versus the 14/7 plan. I’m so relieved. I was having such a hard time with the 14 days. After reading everybody’s schedules & dosage I kind of wonder why we are all over the place with this drug. Does anyone else have metastasis outside of their bones? If so where & what is your schedule & dosage? Just trying to put some rationale of this! All in all, I’m just happy that everybody is managing. @soldanella we have similar metastasis and were both on the 14/7 and high dose. And I am on my third line of treatment in 2.5 years and have lasted a year+ on Verzenio, then 6 months on Everolimus now on Xeloda 3 months. Hoping I stay for awhile. @eleanora I’m hoping for the best for you on Xeloda. We’re all here for you.
I’m rambling. Best to you all and thank you for the valuable information.

My team hadn’t said that folate is a problem. I stopped my multivitamin but don’t pay attention to food intake. I’m not currently having too much trouble with my hfs. I think it’s different for everyone.