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.