All about Xeloda
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I guess I just lucked out. Take steaming hot showers and put my hands in hot water and I don’t have any issues. I’m just not normal lol.
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yeah, we all have our quirks but the key is to keep on track
My feet do not look tooooo bad today, i think it helps also that i stopped wearing socks to bed, airing out the toes seems like good thing
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I too take steaming hot showers but I don't take them every day. Switched to showering every other day or so. Might make a difference. For certain it keeps the layers of lotion on longer. . .
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Pajim - has your onc said what med is next after this summer? I'm on x holiday for another week while I finish my IV antibiotics. With this much of a stretch, going to London seems ultra-doable. I upgraded my seat with most of my miles and booked Claridges. Planning to see Stonehenge, Cotswolds and a play or two.
I will buy sketchers - seems like the x user shoe. Shetland how are you? Still dancing away? I have to figure out how to take a hot steaming shower with a picc line. lol(()) Claire
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Our talk didn't get that far. We just had the "well, it ain't going down anymore" discussion. He was in a cranky mood. We'll wait to see where I am and what trials are available when it's time to switch.
Getting on an airplane on Day 14 of the cycle has turned out to be a bad idea, but the rest of the time it's been fine. And you're sitting in the front of the plane? Excellent.
Ugh on the iv antibiotics. Sounds like you've had a nasty time of it lately but I'm sure it will get better. Getting rid of the iv line has to improve anyone's life.
Day 1 of cycle 14? coming up.
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morning, lovely day. I got an invite yesterday to a family getogether for my 90 year old uncle. He is last living uncle and always been so nice. I am trying to decide how to get to the party. It is in Pa, roughly 2 hours. I have in the past always been very easy going regarding driving distances. But i am twisted about driving by myself. Do I drag a friend down there with me or can I drive myself as I have done in the past but have not since this new crud has appeared? My cousin who set it all up said on the invite that she saw the posting on line so at least one person knows whats up.
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Denny, I use clippers on my feet to clip off peeling skin. My heels are ok too, but my feet are quite red, not gray. No BP issues for me, other than up and down, but mostly normal range. 16 years of chemo? Good grief girl. Can you share the different ones you have been on? I keep feet hidden too, and my toenails are not so good either. No sandals or flip flops for the girl. The middle of my feet hurt and are cracked, and itch like cray cray sometimes, but don't look as bad as my heels. Feels like I am walking on razor blades.
Pajim, no knee pain for me, just the hands and feet. What dosage are you on? My TM's have been rising for the last 3 months as well.
Proud, my hands and feet continue to peel and the feet are the worst they have been. I've been on X for 3 years. Hoping you can make the drive, I don't have any trouble with that. My onc, every 6 weeks is a 4 hour drive, one way!
DianaRose, I take turmeric. Never asked about taking it with X.
Lilly, I would not be able to handle that large of a dose. I couldn't handle 3500 or even 3000. I might have been able to do the 3000, but I got a very itchy red rash on probably 80% of my body.
And a couple pictures of my feet. Sometimes the redness is like a deep reddish/purple. I found out it's hard to take pictures of your own feet! I have others, but I think this gives a good look at how they are.
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goldie, ooh, your feet certainly show lots of peeling, what sort of cream do you use? I just returnned from the gym and reapplied my current fav cream so that is second application, i will also apply late afternoon maybe but certainly before bed.
Yeah, think i will make the drive to my uncles party, it has been very long time since i have seen that side of the family, I just really do not want to respond to lots of questions
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Proud, I have used all kinds of stuff. Mostly cocnut oil, and put my silicone socks on when I can. Usually before bed or when I am just sitting. When I do at bedtime, I wake up and take them off. The dry cracking hurts if you stretch your foot at all, as it pulls on the skin. So they feel good when I take the silicone socks off, but within an hour or so, they are back to how they were before. Just a temporary relief. Thinking of taking a couple weeks off X and maybe even a month.
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Hello all X ladies,
My heart goes out to all who have feet issues! I've been lucky so far on that front. My palms will flake if they get too dry but I haven't had any soreness with feet this 3rd cycle so far and just some minor soreness last cycle. I switched from Udder Cream with urea to Aquaphor becasue I couldn't stand the white residue that got all over everything with the Udder cream. My biggest complaint is slight nausea/acid reflux, and a heady/dizzy/foggy thinking thing. I am also very very tired some days and there is no dicernible pattern which is frustrating!
Anyoe else experience dizziness?
Also, I'll have my markers checked in two weeks after 3 cycles. Has anyone seen improvement in TM that quickly?
Goldie, I want three years! Where are your mets?
Proud, I think you'll be glad you made the trip. You can always be brief with people's questions and quickly redirect back to the man of honor.
With gratitude for the health I have and the healing to come,
Lisa (who is trying to find a picture for her avatar that is more representative of what she looks like now. But with a wig.
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yeah, i will likely make the trip next month to my uncles party. I could even stay over in a small hotel if the day seems too long.
Just back from nice lunch on the coast where i got to gaze at the bay and had a nice seafood lunch
Crashing now, time to slathet more cream!
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Lisa, my mets are hip, spine and skull. But I have no pain what so ever. There was also a very tiny spot on my liver, but we are just watching that for now. I did not have any symptoms in the beginning either.
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I am on 5 round. So much better with one week on, one week off, compare to before two weeks on, one week off.
Peeling was just first round, stopped, no more peeling, no more red feet or hands. I take Bag Balm, ( actually its for cows) but works amazing. I have little general pain here and there. Not too much, just stupid pain in legs, feet and shoulder. i know its from medication. Its just weird to feel " so old" even if I am only 59 with all those aches and shooting pain.
Do you know what I am talking about ?
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Pam - I am in seat 2A each way so very happy. I will walk as best I can, I'm a little unstable at times due to some foot neuropathy after A-train. I am 7/7 on x when I resume after one more week hiatus. I may drop from 3000 to 2500 per my onc. The IV meds are ok so far, but I do get tired. I'm curious what meds or trial your onc thinks might be next.
Goldie - those feet look painful, but I admire your tenacity to be on this med for so long. Intothewoods - I'm with you on being tired and dizzy at times. (()) C
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well, think i am gonna stick with current creams and keep slathering on. Applying it 3 times or even 4 times per day
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Hi ladies, I haven't been on here for awhile . I want to know if any of you is having a weight issue ? I'm doing great on Xeloda , tumor markers going down . My problem is my weights going down too. I try everything to get up . I'm wondering if this is a Xeloda thing ? HELP!!!!!
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Kimchee, I gained weight on my last treatment and worked to get that off and now it's seems I'm still losing. I think it might be the Xeloda. My appetite is not that great and many foods aren't appealing becasue they don't tast right. We'll see what happens now that I'm not following Weight Watchers and came home from grocery shopping with a box of ice cream sandwiches haha.
Goldie, I hope that little liver spot disappears and for good!
lalady, you will have a great trip. I am convinced it's the best medicine.
For those dealing with watery eyes, I can report that mine have improved now that I'm taking the fish oil and using the Genteal drops for severe dry eyes. I previously had the one for moderate dry eye not knowing there was one for "severe." It's very thick though and I need help getting it in my eye. I'm not walking around with a kleenex in my hand like an old lady. Okay I'm not a youngster but the kleenex in the hand... not a good look at any age.
Lisa
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I cant afford to lose anymore weight . I'm 5'8 and weight 156 , I drink Ensure ,I eat a lot of pasta and still no weight gain . I'm getting worried about it! Time to have a serious talk with my doctor.
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I am having the opposite problem. I’m gaining too much weight. Been careful what I eat lately and gained another pound. I need to be more active
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yeah, i just reviewed my weight, up but i am really not following a good diet
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Thanks Intothewoods, I hope so too! Be gone spot on my liver!
Kimchee, what is wrong with that weight? I am 5'9" and 145. I spiraled up to 160 while on Arimidex. And about 6 months ago I started losing weight for no reason, got down to 130. Now that is too little, I was getting worried. But it came back, with no changes in my eating habits. Very strange! I am trying to maintain 145.
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Goldi-ouch to your foot! My chemos will show at the bottom of this post. I use embroidery snips for the loose skin-they are great and cut close.
Now the middles of my feet are peeling, my heels hurt deep inside, and my right toenail is red and swollen in the skin along the side. So I am using Bacitracin and bandaids on that.
I did polish my toenails and am now wearing memory foam sandals, since my toes hurt too much in shoes.
I use Restasis for my dry eyes, and Alaway when they are itchy from allegies. But after 4 years on Kadcyla with very watery eyes, they are a lot better on X.
Tomorrow is my last day for this cycle #3, and I will get Herceptin IV. Then a week off.
I am gaining weight, which I don't want to do. That is entirely because I like to eat.
Denise
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Dianarose,
Same here....I’ve gained at least 5 pounds since starting X. Am going to start Weight Watchers, as it kind of forces you to eat well
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I do not want to think about weight. Not sure if i have gained. Funny but my scale got funny for some time and had me loosing about 20 pounds. New scale put those pounds right back!
Just back from my occupational therapist, we talked about my prospective drive to visit my family. She wants me to go but is concerned about my nueropathy in my feet, we are going to work on it I am thinking about checking into if there is some place to stay overnight so i do not need to do so much driving in one day. Working on it!
Working on upper body strength and boy am i weak!
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Intothewoods, thank your for sharing your ophthalmologist's recommendations. I will look for the compress you named. My appointment is still a few weeks away.
Mandymoo, thanks for the reminder that sometimes one can go back to a treatment that worked in the past.
Denny — black marks — yeah, I have three toe nails with them now. What's going to happen to me? Will all my nails get black marks? What happens when a nail lifts too much? Is it terrible to lose a nail? The lifted part corresponds to the red areas on the soles and sides of my feet, which wrap around part of the big toes. Maybe that means the lifting will not extend to the whole toe nail?
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Lalady, you asked about creams. For feet I rotate among three: O'Keefe's Healthy Feet (has urea), ShiKai Borage Therapy Foot Cream, and Everyone Lotion 3 in 1 (has coconut oil). These are all unscented and paraben-free, which is a requirement for all my cosmetics. My skin is really in very good shape, though red.
Pajim, could your knee and calf pain be related to moving differently in an effort to avoid the foot pain? What you said about being sad that now, when you are sick, your career reputation is increasing ...I feel the same way about how my dancing is getting so good but I know my dancing days could be over at any time due to treatment side effects if not to cancer. I almost reached a dream goal last year but was denied completing it by bullies who thought I would be unable, but I am NOT disabled. Yet.
Golly, yes, proudtospin. Your onc should have told you to avoid heat, pressure, and friction on your hands and feet. I always finish my warm showers with a cold rinse of feet and hands.
Lillymillie, 4300 sounds like quite a high dose, unless you are a big lady.
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Proudtospin, I am in favor of your going to the party and enjoying your family and your life! I am also in favor of adapting to your tiredness by getting a ride, or an overnight half-way, or whatever solution would work to conserve your energy.
I'd say tiredness is my biggest issue these days. I accomplish little in a day. Physical and mental tiredness. Not depression. I told the liver mets people that I think my onc and I are playing chicken. Who will be the first to say dose reduction? She knows I will want to tough it out since this dose is working, and I know she is all about quality of life. My DH might betray me and tell her how tired I really am. As I am sure you all can see, I have just read several pages and tried to catch up.
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Shetland, i sort of think i could drive to the party and then crash somewhere and drive home next day. My current plan, my occupational therapist is for it I think but concerned about my nueropathy in my feet so will work on it
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Shetland, I have all of that redness and still lifting nails. No black nails tho. The redness is around all of my toes tho, not just the big toe. And SUPER red by the end of the day.
My fatigue is not nearly as bad as when I first started the Madame.
Denny, I see your chemo at the beginning of your treatment. The basic that we all do! And then Herceptin in 04 and Faslodex in 2011. Has Herceptin been your only treatment between 04 and 11? Certainly you weren't on AC & T all that time?
Been a stressful year for me, so wondering if that is why my TM's are rising. Will run that by my onc on the 17th. Doing labs tomorrow, will have results Wednesday. I feel no different that I have a year ago, and longer. I have no pain what so ever, only my feet and hands. But that is from X, and not cancer.
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I have a question ladies. I started Xeloda week ago and my dr told me 3 tablets 2 times a Day morning and afternoon. Week on week off. I went for second opinion and other dr. told me to take same dosage but 2 weeks on one week off. My question is how you guys take it
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