All about Xeloda
Comments
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Well, I definitely have HFS and the pharmacist I originally talked to who said it was not painful just cosmetic is an idiot. I can barely see the redness on my hands and feet, but I definitely feel it. It hasn't stopped me from still doing housework and gardening, but I'm sure it will eventually. It would be awesome if I could afford a housekeeper and a gardener, but I can't so someone has to do it. My kids are getting more competent each day with helping me so that's a relief, but they hate gardening. I don't blame them, even in the evenings it's like a billion degrees out there. lol When I have time, I'll review all the suggestions for dealing with HFS. Lotions doesn't seem to be making a difference at this point.
I have noticed that my eyes are funny...not runny exactly, but different feeling. It's not a problem yet.
Oh, what are you doing about bloating? I am seriously running out of clothes that fit my belly!!! I'm so frustrated. My weight is not going up, just my belly size. Is it air or fluid? I take anti-gas to help, but I'm not sure what else I can do. I've never dealt with bloating before and have no idea what to do about it. I drink plenty of water during the day so I don't retain water since it's so hot out, but maybe I should drink less or more. No idea. I guess I could google it. I would appreciate any suggestions before I run out of clothes.
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Cynthia, I saw a report the other day questioning the amount of water we are told we need. This Dr said even the 8-8oz glasses aren't necessary as we get much water from our fruits and veggies.
So maybe you are getting more than your body can use.
As for the HFS, during my on week it got quite uncomfortable and stings. My fingertips were very irritated. The effects started to wane immediately first day of my off week. Still redness but the skin irritation faded. Thank heavens
Monthly check with the onc is next week, Im wondering if she'll recommend a slight dosage drop. We shall see. Otherwise this is the most functional I've been in over a year. Thank you Vitamin X.0 -
I have noticed more and more gas problems and my eyes feel funny can't quite explain it. They feel puffy and sleepy but not crusty as some have described. thumb and first2 fingers on right hand feel funny and feet seem to retain water but that's it's so far. This is the best I've felt since last October. I'll take this drug any day.
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Chickadee - so glad to hear the HFS stops quickly once our on week is over. I'm expecting it to get worse over the next two on days, so I'll need it to improve quickly. I'm going to try diffferent lotions, too, and try to be better about using it.
I wonder if I am drinking too much. I drink iced tea all day long, then I switch to water in the evening. Maybe, it's just too much fluid. I'll try to cut back. Thanks for the info.
I'm glad you're doing so well on X. I feel pretty good, too. It's nice to be able to walk well again which I guess goes without saying.
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oh, the gas I had was horrible. i could walk down a hall and have bursts of gas with very step. lol. i am 2 weeks out from my last cycle. my hands and feet have stopped feeling weird. my tongue has stopped swelling so i don't bite it as i sleep. i sleep better, but am still damn tired. i am still pretty sore from the anastrozole. my arm swelling (not quite lymphedema but closely watched) is much better off the X.
all in all, i am happy i took X. I would take it again in a heartbeat if needed.
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Cynthia1962 - I have the HFS and I just kept thinking it was something to just have to deal with and when I would see the onco I said it was not bad. When I went to see him 3 weeks ago he took a look at them and said, no we do not want this, I said they were not bad I just worked around it and he said I should not have to do that and they would continue get worse. I have been on it since September 2011 and I have used all of the creams and lotions I could find and nothing helped. The onco cut my pills down, I was taking 4 in the morning and 4 in the evening, was cut back in December to 3 and 3 and last time I saw him he cut it to 3 in the morning and 2 in the evening, 7 days on and 7 off. I can not believe how much difference it has made, with the feet and the nausea, they are still sore and cracking, hard to walk but are better than they were before. This is my second cycle of 3 and 2, so I think it will continue to get better. You might mention it to your onco and see if they would want to cut your dose a little.
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twistedsteel - It very well could be gas for me and it's just getting trapped. Weirdly enough, I was more gassy my first week on than this one. I can't believe how big my belly is by the end of the day. I look pregnant. I'm going to find out how much anti-gas I can safely take. Thanks for the info.
jeanieb2 - I'm glad your feet have improved on the lower dose. I'm on 3000mg a day in two doses. My onc did ask me about side effects after my first week and he seemed surprised that I had so many after just one week. lol Wait until he hears about my second week. I've been researching how to deal with hfs and I can't believe how many contradictions there are. Some info says to lotion often, other say not to lotion at all during your week on. Hmmmm. I don't think they really know. I've avoided hot water, and rubbing, but I have gardened with tools, although, that doesn't explain my feet. I don't think it was anything I did or didn't do, but I'll keep trying.
Frapp - that's a good description of how my eyes feel...like they're tired and puffy. At first, it was just in one eye and I thought I was getting pink eye, but it didn't look like it. Today, both eyes feel that way, but it's not pink eye. I keep wanting to rub them, but it doesn't help. Oh, well, I can live with it. I'm glad X is helping you to feel better, too.
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One of the reasons I asked to go on the 7/7 schedule was another post further back where an MDA onc told the poster that Gastro SEs seemed to get better with the 7/7. Initially on 14/7 I had all sorts of Gastro problems by the second week.
Cynthia, Perhaps you can ask your onc to OK the 7/7 schedule for you. Maybe it would help.
I'm still on 4000mg a day. This is my off week. Had a visit from big D on my first day off but other than that SEs are ebbing.0 -
Chickadee - I am on the 7/7 schedule that's why my onc was so surprised I was having side effects so quickly. I am just grateful I get to go on my week off about the time I am fed up with the side effects. I am having much less GI issues this week on then my first cycle so that's a relief. Maybe my body just needs time to adjust and run through all the side effects before it behaves.
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I didn't realize we were doing the same. I do feel like I went through all sorts of different stuff the first month on the 14/7. Then things started to calm down but there are still random events. It's a weird med that's for sure
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Cynthia: I did find that after I had been on X for a few cycles, things really calmed down. So I think your statement about your body needing to adjust could be very accurate. For a bit there, I was really worried myself about the se's and how long I would be able to tolerate them, but now after being on it for a while, everything seems to have smoothed out, so to speak. Hope you find that to be the same for you. Hang in there!!! HUGS!!
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Lynn....did you find that you got more energy after being on for a while? This is my second cycle 14/7 and I am finding that I feel constantly wiped out.
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Chickadee & Lynn - I hope things get better for me, too. The side effects really aren't that bad, just inconvenient I guess and a little uncomfortable.
Day 6 of 2nd on cycle: While getting dressed a few minutes ago, I noticed the my back was bright red. I had just scratched it a bit because it was itchy and wow, did it look bad. I had my daughter look at it and she declared it (in her 10 yo expert opinion) definitely a rash. lol It's getting less red now that I quit touching it, but she says there are still small bumps there. I was a little freaked out, but the info I have on Xeloda doesn't mention anything serious concerning a rash, but does say dermatitis is a possible side effect. I did wake up with a night sweat last night so maybe it's a heat rash? I have no idea because I'm not rash prone and I can't really see what it is. I feel fine, otherwise, and I've already taken Benedryl for the allergies this morning, so I'm just going to see how it goes.
My hfs is a bit worse with some on my fingertips today and my feet burn a little more. I'm trying to think of things to do today that don't involve my hands and feet. lol Not an easy task. I'm looking forward to my off week starting Friday.
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I have rash and it Is aside effect. I got the rash on another drug and l oily it's less on this one starts with itchy bumps then turns red. Aergy pills help with the itching
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Thanks, Frapp! It's good to know I don't have to worry that it isn't a typical side effect.
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Frapp: Just chalk this one up to everyone being different I suppose, but I have never really had any fatigue on X. At least not like I did on other chemos (Abraxane, for example, which just totally wiped me out - walking to the mailbox and back required a nap afterwards - hated that!!). I do have some tiredness, but not sure that I can blame X for it all. I know I have read of several who do have that se, so hopefully they will jump in soon with some tips/advice for you. I do know that while it sounds very counterproductive, but I do feel better when I try to exercise - even a little bit helps with my energy levels. You'd think that if you're already tired, doing more would make it worse, but it seems the opposite is true. And I don't mean run a 5K or anything....a stroll through the park or neighborhood is good.
Cynthia: Very interesting you mention this itchy rash. The other day I discovered a small area on my arm that itched like crazy! It was not a mosquito bite....it was almost like several tiny "bites" all in one area. A co-worker suggested maybe ant bites...IDK!! I was not even going to mention this to onc since I didn't think it had anything to do with X, but maybe I should?? It's better now....not as itchy and not as red.
Quick update on me: Had scans yesterday and I'll get the results this Friday. Very anxious to hear if X is still working!! Sure do hope so! **Fingers Crossed**
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Lynn - Well, it's very interesting that you mention individual bite-like areas that itch. I have this, too. Sorry, you have it as well, but I'm so relieved I'm not alone. I noticed them yesterday because they itch so much. I have just a few, but not all in one area. At first, like you, I thought a bug bite, but it wasn't raised enough. Then, I thought, skin damage from sun, but that wouldn't itch. I even considered skin cancer because I was running out of options. lol They are flatish, rough, and itchy and when I scratch them too much they become like an open sore. I'm glad I got the other rash today because now it all seems to fit together. I'm trying not to scratch them anymore.
I hope your scans are good and you are still doing well on X. I'll keep my fingers crossed for you, too!
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I'm guessing if the Xeloda causes irritation to the capillaries in our extremities it's likely it can leech into other areas of our skin and cause irritation.
As for fatigue, there always seems to be one day that I crave sleep all day. No rhyme or reason.
Right now I find stiffness in my joints is ganging up on me. I must look like 90 years old getting out of a chair. But once I get moving I'm ok.0 -
Lynn, hoping you get good scan results.
I am experiencing some fatigue like the rest of you. On my second cycle. My onc. told me exercise has been proven to help. I also have a terrible metallic taste in my mouth.0 -
Chickadee - that explanation makes sense about X leeching out of other areas, too. My joints are a problem, too, but I don't see that mentioned anywhere in regards to X so I wasn't sure what to think.
Swannay - I had one day last cycle where everything tasted awful, but not metallic. Lemon in my water/tea helped a lot and others here have recommended lemonaid, lemon drops, anything lemon. That's all I can remember because that's what worked for me, but I know there were other suggestions as well. I hope that taste goes away quickly for you.
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Lynn - I have to agree with you about exercise helping with fatigue. I was told that also and plan on getting to it as soon as I can get my feet better. I am hoping that cutting one pill a day will help quite a bit, I can tell they are not near as bad as before so I do think it is working. I will go off in a month completely before we leave and then I really have to hit the exercise hard to get in shape for our trip. I will be thinking about you on Friday and praying that you get very good results. You definitely are an inspiration for me, working, exercising, traveling doing what is normal, I know I am hit with fatigue once in a while where I can not get off the couch but that is far and few between and I know what I need to do. Take care and keep up the good work.
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i love this place and all of you just got done with an 18 day festival all went pretty good some hfs but bare able have definitely had the weird taste thing going on. i've had joint pain in my right hip but it comes and goes this weekend it was so bad i could hardly sleep now today its gone. have taxol tomorrow and scans scheduled. Sunday seems to be my crash day slept of and on all day. good luck to all. may today bring energy and goood news
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Cynthia: Sounds very similar to mine - must be the same thing! I now have a small area on my back too - saw that this morning while getting ready for work. So, I will ask the onc about them tomorrow. I'll let you know what he says.
Jeanie: I bet you will be surprised at what a difference cutting out that one pill will make! I bet you are getting super excited about your trip!!
Braids3: Wow, an 18-day festival! Good for you!!
Thanks to all of you for your kind words and well wishes about my scans. You are all so sweet!! At least I have a morning appointment this time so I'll find out soon! I will let you all know what he says.
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Good luck Lynn!
Well I spoke to soon and now have 3 blisters and pretty damn sore feet!
Have been soaking in Epsom as suggested so we'll see how it goes.
I could kick myself because I swapped out of my Crocs and went into a pair of soft slip ons. Guess I'm a Croc gal as long as I stay on Vitamin X!
Also have noticed that my freckles (of which I have a lot) seem to be getting more / darker / joined up. Seem to remember someone saying that they got freckles on the inside of their mouth!
One of my UK pals who is on her 4th cycle of X has had her TM's go down from 6500 to 500 (after 3 cycles). She has liver mets and recently had a CT and her onc is predicting good things.
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wow great news on the tumor markers mine went down too. had my appt today feel like a human pin cushion 5 sticks to get my veins and blood drawn. but it looks loike it could be my last taxol treatment yeah depends on what my scans say i'm sure hopin for that good news. oc said the hip pain was from taxol which i kinda figured hope everyone stays cool today and has some fun some how love ya all!
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Lunn, Cynthia...you are describing my rash to a T. It starts by looking like a small bit. Then others will join it and it will sometimes become bigger. I have several spots on the bottom part of my legs and one at the back of my arm. I'll be thinking about you, Lynn tomorrow. Hope all reports are good.
Alesta, sorry to hear you've been hit in the feet. Great news on your friends TM's!!
I spent the day on Wednesday traveling to Albuquerque and half the day today with grandson at the zoo. I'm whipped!!!! The back of my heels are very tender and I can hear my dogs barking every time I stand up. But it was worth it to spend time with an inquisitive 3 year old and watch the wonder on his face. I think I'll have to spend the rest of the day off my feet. I feel like such a slugg sitting here but I guess we need to learn to pace things.0 -
Frapp - it sounds as if you had a wonderful visit with your grandson, but I can remember how tiring little boys are. I think resting and putting your feet up is a good idea. My feet are much more sore today so when my kids were invited to a playdate, I jumped at the chance. They're swimming and having fun and I'm sitting here with my feet up. I'm hoping that staying off my feet will allow me to be on them this evening.
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Just a quick note--remember the B6 to help with HFS--100 mg. a day helped me IMMENSELY.
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Thanks for the reminder sue, I'll have to try that when I get home.
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I haven't tried that either. Asking Dr on Tues. Think I'll get some anyway. Thanks.
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