All about Xeloda
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My feet and finger tips started to get very tender yesterday, my second day off. Today are feeling a little more tender and tingly. I think my week off came just in time. My feet are not liking the sandals I wore to work today.
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Frapp - my feet never completely quit hurting and I started the X again today. This could be a problem. lol I hope your HFS goes away quickly.
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i am on my 4th round of 2000 mg. of 7/7...like many of you here i will be having a repeat liver mri in the next few weeks...when i get the courage to make the appointment!
what i have noticed on the last two rounds and i am curious if anyone else is experiencing.....i had a lumpectomy and sentintel node biopsy in 2008 on the left breast, didn't have a good surgeon, had seroma and a lot of pain. then i had partial breast accelerated radiation which made the whole breast even worse...it has basically been rock hard ever since then. in 2010 i had another lumpectomy on the right breast (with a much better surgeon) for dcis, no sentintel nodes...
so these last two times with vit x, when i am taking it, both of the breasts in the areas of the surgery hurt like hell...i can't figure it out. of course i go to the worse possible place...which when i bring up to my onco just looks at me and says "what difference does it make"...meaning we know you have cancer throughout your body so why worry about this....but i guess i like having answers....which in this entire process is definitely a lesson about not having control that i am given just about everyday.
just wondering if anyone else has had the experience? so grateful for this board!
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I have a couple questions that I hope you great ladies can help me with.
I have been on Xeloda for 29 months. 2,000 mils a day, 7 on and 7 off. My biggest SE now is watering eyes. In the morning it pains me to open them. While I sit drinking my coffee it feels like somebody is sticking a fork in my right eye. I recently changed oncs because I did not like him to start with and when I complained about the pain in my eyes in the morning he told me to "roll over and go back to sleep". He had an attitude to me that said your are going to die anyway so quit complaining. I found a new one and I am very happy with her.
Now my other stupid question is: Everytime there is a holiday, my birthday, anniversary I am on my pills. It never fails. Can I have one drink? I never drink while on my pills. I am scared to death to do it but I wonder if any of you ladies drink while taking Xeloda.
Also does the Xeloda depress you?
Thanks for any input you can give me.
Gigi
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Gigi, I am just finishing second cycle. I had a glass of wine last night and was fine. I don't think it would hurt to have one once in a while, as long as labs are ok and it doesn't bother you. I know others who have a drink from time to time while on xeloda, but I plan to ask my onc. when I see him.
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I enjoy an occasional cocktail while on Xeloda. I asked my oncologist if I had any restrictions and the answer was no. I think if your liver function is good and you have no other health issue, enjoying a cocktail is not going to be a problem.
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Just out of paranoia I plan to enjoy a margarita in the middle of my off weeks.
I was on the lower dose this week and my hands like it but my left foot can't decide from one day to the next to be an angry red or swell more than usual. I think I'll make myself soak it in cool water with the Epsom salts a bit more often.0 -
I asked both my onc and the nutritionist (well, the friend who came with me did - she said she knew SHE needed a drink after all this and if she needed one, she figured I'd need one too). The only thing both of them told us was no grapefruit and no multi-vitamins. The nutritionist said she would never tell anyone to drink to excess but she was also not going to tell me that a margarita or two was off-limits even during my on weeks. But I am on a low dose and have lung mets so maybe if I had something in my liver it would be a different story.
I guess you just have to make sure the bartender doesn't give you a drink made with grapefruit juice...and don't use it to wash down a multi-vitamin.
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I will have one cocktail every other Friday or so. My onc said it should be fine.
TXGigi....I am only on my second round but am finding that towards the 14th day on, my eyes get blurry and very sensitive to light. I have never worn sunglasses but had to break down and get a pair yesterday when I was out. The daylight was so bright I couldn't keep my eyes open and they were watering. You might want to try some sunglasses even inside or dim the light in the room and see if that helps.
This is my week off of second round and I am noticing se. My feet have some spots on them that feel like blisters when I walk on them but there are none. I do have a very red round spot in that place of my foot. I have a rash on the outer corner near my left eye and I have had three people ask me how I bruised my elbows. They are not bruised but have darkened in color. Think I'll get off my feet. If i didn't hurt so much I would make a nice chickadee foot soak. Think I'll take some ibuprofen and put my feet up instead. Isn't it funny how the se's seem to show up on the week off?0 -
Saltair - thank you so much for mentioning your pain in your surgery area. Yes, I have this. I just figured I was weird. I've been on different treatments that seem to cause pain on the surgery side, but I haven't felt it in awhile and really notice it on X. My breast and my node area is very tender. It could be due to fluid retention, possibly. I'm not sure what else, but it's probably no big deal.
Gigi - Yes, I have a drink now and again. I've noticed that they don't taste "right" at certain points in my tx weeks, but most of the time it's fine.
And, yes, I was depressed the last few days on X and a couple of days into my "off" week. I'm hoping it doesn't happen more often.
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Chickadee foot soak. LOL.
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I drank while on X, and never had any issues. I would not drink a lot during the "on" weeks though. If I wanted a margarita (or 2!) with the girls, I did that on my off week. My onc was aware and said it was ok.
When I first started, I felt like there was a big callous on the bottom of my feet - like I was walking on a lump, but there was nothing there! Weird! It eventually went away on it's own just as mysteriously as it appeared.
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That's what my right foot feels like, Lynn. Like I'm walking on a lump but o my bing there is a very red spot.
Was up all nite with D. Feeling kind of wipped today. Also clumsy. I broke a VERY expensive vase this morning, so now on top of everything else, now I'm depressed too. Can't wait for my on weeks to start on thursday I feel so much better then.0 -
O my bing???? Hate spellcheck!!
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Frapp - "Can't wait for my on week to start..." LOL - weird isn't it!
Lx
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cynthia1962.....THANK YOU for giving me some affirmation that i am not completely off my rocker!!!! i do notice fluid retention, but i didn't really think about it in that area...which makes sense that it could be because after the surgery i was in the surgeon's office every week for a month with her sticking a needle in my breast to draw out fluid from the seroma.....what is strange is that for as painful as it was yesterday (very!) today it really isn't bothering me...don't know why that is but will be grateful for it!
gigi.......might be able to help a bit with the watering eye problem and light sensitivity.....when i first started i was on abraxane. after my 2nd treatment on that i was sitting at home with the blinds closed and little bits of light coming through and i thought my cornea's were being scorched...never felt anything like it. i had such strange reactions to the abraxane (the light sensitivity being a major one) that my onco called it an "idosyncratic reaction" to abraxane. so i went off of that for about a month and then started X.
i still have very, very sensitive reaction to light...if i am in a doctor's office with those glaring flourescent bulbs i have to have sunglasses on....anyway i also started to notice tearing in my left eye, and pain. i went to see my opthamologist who i adore...thinking well i have scratched my cornea or something....wrong! the official title is "conjunctivochalasis chemosis"....the layman's term...chemo can cause edema in many places and one of those can be the conjuctivitius (white part) of the eye. hence, the tearing and the pain because if you have edema you in essence have something swelling and putting pressure on a nerve. my opthmologist gave me some antibiotic ointment which didn't do much, and she said it was more just to lubricate if the eye felt scratchy....otherwise there wasn't anything that could be done...short of stopping chemo.
i know that doesn't give you a solution, but i find that at least if i know why i deal with the s/e better. hope that helps!
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My hands and feet are pretty red and sore this 3rd cycle. I have 2 more days of pills to go, so I'm worried about how bad this will become. It never went away completely from my 2nd cycle. My feet are also tingly and my toes and fingers are darkening on the tops. The gel inserts in my shoes didn't help, so I'm wearing my slippers a lot. No blisters yet and I'm trying to keep my feet up as much as possible. I'll know tomorrow if my mood will start to tank. This is some crazy stuff.
For those in the U.S., enjoy the 4th! Hang in there everyone!!
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Cynthia, I'm glad you mentioned the darkening of your skin. I just noticed las night that the tops is my fingers have darkened. I thought my hands were dirty.
I had my apt yesterday with onc in Boston. Liver function numbers are up slightly. She said that could be from xeloda or the ibuprofen Ive been taking for pain. If the pain continues, she wants me to call so she can move up scans that are scheduled for end of August. Said that xeloda may be working on breast tumors but maybe not bone. I started getting the bone pain after starting the xeloda and was telling myself it was tumor flare. Keeping my fingers crossed it goes away with the 3rd round that's starting on Thursday. I really want this to work for awhile. I've had to mess with meds every 3 mos since December. I affraid the next step will be the end of my hair and I just don't know how to do the whole scarf thing. I've tried and it always looks terrible plus they just slide off my head. I know I should be worrying about other things is this doesn't work but "those" things are much scarier. Think I'll focus on the scarf issue.
Happy forth to all. I'm going to enjoy my day off and be lazy. Slept late and may go to the local town fair before it gets too hot.0 -
Glad you switched oncs, Gigi. I spent a year on xeloda and personally didn't really notice much difference SE wise to weeks off vs weeks on. I had watery eyes too...but unfortunately not the solution to it.
For what it's worth...I suffered quite a bit with the red burning feet...but not hands. At least for me it seemed random..no rhyme nor reason to when it came and went. Just ignored it as much as possible. Didn't let it stop me from what I wanted to do. Didn't listen to the advice of "no unnecessary walks" etc. Took a three hour hike with a friend...danced up a storm one night. Oddly enough neither of those activities bothered me while I was doing it but after....my feet burned like hell!! Put ice on them and they recovered though...so I still didn't hesitate to do what I wanted to do....knowing I could just ice them after. Point I'm trying to make is..no matter what I did..the redness and burning was temporary..not cumulative...it's not like it got progressively worse and stayed that way...at least not in my case. Was on it for a year..off for about three months
now and feet back to normal.0 -
JillThut - You said you were on Xeloda for a year. You have been off for 3 months, how long after you stopped did your feet get back to normal or semi-normal. My oncologist said that they would get worse so he cut my dose back by one pill a day, I am on 7 on 7 off cycle. We are taking a trip to Alaska in mid August and I am going to go off 1 month before we leave, I want to be able to do a little hiking, is this enough time for them to feel better, do you think? I thought my feet were much better on Saturday so I decided to go to the mall and walked around shopping for about an hour or so, by the time I got home they were so hot and sore and some places were rubbed raw so I have been trying to keep them up and lotioned as much as possible but they are still pretty sore right now. I was just wondering how long it took before you noticed the difference, I would appreciate any input on this. I have noticed that it does not matter if it is my on week or off week as far as my feet go. Thank you.
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You know..it's kind of hard to answer..I would say maybe a week? But while on xeloda mine were very red and raw sometimes but not always. As I said during a long hike they'd feel fine but it was like after I stopped all the nerves would wake up and they'd turn really red and burn. Putting ice on them would sooth it...and within the next couple of days they wouldn't be so red anymore. Then sometimes the redness and soreness would come back even if I wasn't abusing them. I still think within a week or two they were probably fine. I would say after a month without xeloda you should be ok...but of course everyone's different. My toes did blister at some point too..causing the onc to reduce the dose. I started two weeks on and a week off but quickly changed to a week on and a week off....much more tolerable that way.
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Jill - your experience with HFS is interesting. Mine seems to be cummulative, but I wonder if it will continue to be so. I'm staying off my feet as much as possible and wearing slippers when I walk, but they are getting worse each day. My feet are more purple than red. lol My hands are a bit worse, too, but mostly on my thumbs. I'm going to try the ice and see if it helps because nothing else is. Thanks for sharing your experience.
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Cynthia....is the skin in the creases of your fingers cracking too? Purple feet sounds like a pretty bad case of HFS. I had that and my dose was reduced.
I started Xeloda October 2011 with 1650 twice a day 14/7. After December my dose was reduced to 1500 because of awful stomach pains. Then the HFS started getting pretty bad and at one point I could hardly walk. Both feet felt like two big ol' blisters and they were purple. I was at the oncologist's on the day of my last Xeloda day and he told me to quit taking immediately...not even my last evening dose...take a two week break and start taking it 1500 7/7.
Now my hands and feet were no longer purple, but red and cracking all the time. Also the skin on my fingers is so tight that I can't straighten them. I point to things with a crooked, arthritic looking finger...lol. He reduced my dose to 1000 7/7. I am now on my second week of the reduced dose and my skin is no longer cracking, but still gets red on pressure. My fingers are still tight and crooked. I go back to the doc on Tuesday and will see what he thinks. He thinks I might have to quit Xeloda. I'm NED since December and have read a German study that found that HSF is a sign that Xeloda is working.
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I never had any problems with my hands at all...so maybe overall mine was not so severe. I wasn't real careful either..continued to do what I wanted and seldom even bothered with the greasing them up at night..although I did do that sometimes and I think I should have done it more...just don't like the feeling. But any blistering caused the onc to reduce the dose...so I guess she was on top of it preventing any serious damage.
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My nurse said that with HFS one of two things can happen. Either you experience it as cumulative ( in which case they cut the dose) or you get it quite quickly when you start and it gets worse until you stop ( in which case they reduce the frequency - so 7/7 instead of 14/7). I'm currently having an extra 5 days off so my feet can calm down. Also it dropped my neuts to 1.5 which surprised me as I didn't think it was going to affect them so much.
My biggest prob at the moment is bloating and trapped wind which gets worse as the day goes on. I start the day with a waist and come 6pm I look 8 months gone!
Thankfully I have 2 dogs to blame the wind on if we get visitors...0 -
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My worst problem are my eyes....they are so unbelievably dry. I've tried 8 different active ingredient eye drops....none work.
This Xeloda experience is expensive....tried at least 10 lotions.
My white count is low also.
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You're all such a wealth of information. I don't know what I would do without you. Suffer, I suppose. lol
So, I don't have cracking/peeling yet with the HFS - just tenderness, redness, and purpleness. My slippers seem to be all I can wear right now, but at least they are okay. I can still use my hands, but I have to be careful not to put too much pressure on them.
The bloating/wind has improved overall, but the last two days it's kicked into high gear. I take anti-gas pills and they help a bit.
This is my last "on" day this cycle and I'm looking forward to a week off. I've been so sleepy these last two days. I thought maybe it was due to antihistamines for my terrible allergies, but I haven't taken any yet today and I'm ready to go back to bed. I wish I could convince my kids that we all need to hang out in bed today.
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The bloating and wind seem to kick up a notch when I'm on the last couple days of pills. Then lasts all of my off week. I just started back today and am hoping that it leaves. I have not gained any weight but I can't fasten my pants. Not good!! I've bee taking gasX after dinner but I think I'm going to try taking it more often to see if it helps.
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great info from last couple days thank you all. say onc today great news my cat showed no new ones and all other tumors are stable plus i'm officially off taxol yea no more steroids. he's upping my does by a gram so will see what that does to the hfs right now its real infrequent and manageable i just jump in the pool that helps and when they get real hot i use the henna. i really appreciate all of you here i don't feel like i'm going through it alone THANKS blessings
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