All about Xeloda
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Happy Birthday, Chickadee! I hope you had a nice day.
Warning - vent to follow: So, I survived our four days out-of-town visiting family, and it was quite enlightening, too. It hadn't occurred to me that I had kind of been living a shelter life at home and there would be a lot more obstacles away from home. I had figured sleeping in another bed and the actual travel in a car would be an issue, but I hadn't considered things like stairs, lots of walking, getting in and out of a low car multiple times, and no consideration at all from anyone for my limitations (including my husband). Now, I know where he gets it from. It's every man/woman/child for him/herself. And, they are the loveliest people, but there isn't a nurturing bone in their bodies. And, I'm so used to being independent, it's hard for me to ask for help, but there are times when I have no choice now. But, it makes me angry when my husband is surprised that I can't walk up 3 flights of stairs to where our car is parked and there's no elevator in sight. He's treating me as if everything is perfectly fine, but he must see how much pain I'm in. I don't hide it and he knows I take pain meds. Sigh. I had to add Tramadol every morning to the 800mg of Advil I take just to function, but it didn't occur to me to do so until I finally woke up one day and could barely get out of bed. I'm such a idiot, but I least I thought to bring the Tramadol. I don't encounter more than one or two stairs in my daily life apparently because I had no idea my knee joints would hurt so badly, not to mention my hips. What does everyone else do about stairs? My nephew's living space is on the second floor so once I'd make it up there, I wouldn't leave for anything until it was the final time to leave.
I'm seriously thinking about getting the handicapped placard because my ability to walk is very unpredictable. Since starting X, I've noticed a lot more achiness, especially in my hands and hips, but I don't remember that listed as a side effect. The advil and Tramadol aren't helping it. Most of what I notice is the GI issue of feeling like I need to eat. The hotel we stayed at had a wonderful continental breakfast so it was easy to eat before taking my pills, but it's a little more challenging now that I'm on my own. I had a piece of toast with peanut butter and jam this morning, but it ended up not being enough and I've been snacking to try and ward off the awful feeling in my stomach. I'll need to do better tomorrow.
Sorry for the rant all. We really did have a great time. It was just the first time I was out of my element with this stupid disease and around people who hadn't seen me in years and it was hard for me to handle emotionally (and for some of them, too). More fun with MBC..
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I'm wondering, is anyone on xeloda AND an ai? It just seems that the side that is only 2% Er+/pr- has almost disappeared while the side that is 95%er+/50%pr+ is hard to tell if there has been a change at all. Something I may ask my onc next week.
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Thanks, Twistedsteel. I hope this is the end of the chemo line for you! And thanks for the tip on getting the copays reduced - I'll check with the pharmacy once my first batch arrives. As for my hair, well that's one thing that has definitely gone well. It's a big batch of curls, but it's hair and I'm not complaining at all.
Has anyone actually lost her hair completely on Xeloda, or it is just thinning? I think I read it's a 15-20% side effect.
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I've been shedding for quite awhile. Constantly flicking hairs off my arm, out of my face. Shaking out my clothes. Poor dogs are ingesting hairs..........ok this is icky.......they poop but sometimes a poo is hanging from their butt because the hair is stuck. Have to chase them around with a paper towel.
I swear I vacuum often but poor puggies. They get the hairy end of it.0 -
jeanieb2-about the time off. I have been on the 14/7 and the week off are my worst days. By the end of the second week pff I wasn't needing naps and by the end of the 3rd week my hands and feet had healed. By the end of the fourth week I spread 3 truckloads of mulch just like the old days--siiiigh!!!! And I could tell there was still some residual drugs in my sytem becasue my pee still smelled chemical and when I started sweating I could smell it. Hope that wasn't TMI for anybody. I will not regret those great days in May no matter what the scans say in July.
Cynthia-sorry about your non-nurtuting people but I am well aqauinted with the type.. As far as the stairs I have found if I go down sideways 1 step at a time it hurts way way less. I also then can hold the handrail with both hands. That would be for going down the stairs-they hurt me way more going down than climbing. I also take an anti-inflammatory from an orthopedicc doc that way outpaces the Aleve or Advil. I don;t take it all the time because it is hard on the liver but if I know I am going somewhere I load up for a couple of days ahead. Hope this helps. I would defin itely get a handicap sticker-you are struggling so why not take advantage of something that will help you.
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lilylady - Thanks for the info. I also feel worse on my week off but thought it was my imagination, it is like it has finally caught up to me and it is not a real good week. Just about the time my feet kind of start to feel better and I get a little energy, I am on my third day of treatment and it starts all over. I am glad to hear that within 3 weeks you could tell the difference. That is what I wanted to hear because if it took any longer I was going to go off sooner but this should work out just fine. Thank you.
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LuvRVing -- I have not seen many posts about people losing hair on X. For me, I can't tell any difference at all. My hair is growing back like crazy - thick too! Funny....the other day I met a friend for dinner who I have not seen in several months. The first thing she said was "your hair is getting so long" -- I guess "long" is a relative term because it's sure not what most people would call long. LOL!
Jeanie -- I think you will do really well with your break and should feel pretty good for your trip - hope so anyway!! Hope you have an AWESOME time!!
))Sometimes I wish I didn't have the week off....I mean I really enjoy that week not having to keep up with the pills, but every time when I start back, I get the funny tummy stuff for a day or so. Sometimes I think that if it were continuous I woudln't have that se, but that's not a good option either.....stuck in a catch 22!! :-\
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Hi everyone! I'm in the midst of my second cycle of xeloda (14/7), and know I'm supposed to take it with food, but the nausea has had me in its grips and I actually feel better when I take it without food, like the tykerb. Does it not work as well without the food? I have an appointment on Friday, but I thought someone here might have the info...thanks!
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Hi mauimom (cute name btw!), I haven't heard that it doesn't work as well without food, just that it is more likely to cause stomach issues if you take it on an empty stomach. But if you do better without food, well then I'd keep doing what you're doing!! Let us know what your onc says on Friday.
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I actually feel better on the X. It's probably psychological (and definitely a result of, so far, few SE). But now at the end of my "off week" I'm feeling what I call "twinges" on the side of the bad booby - not painful but just moment when I am conscious of areas (like under my armpit or by my clavicle) that I think correspond to the nodes and other bad areas. I felt these before I started the X but during the on weeks I didn't feel it at all. So I've been reminding myself "You go back tomorrow". But after only one round I don't know for sure if it's really something or just my mind playing tricks on me ("the meds are leaving your body - the cancer has nothing holding it back now so it can spread again").
My bad booby doesn't feel as heavy as before and I don't feel my primary tumor as much as I could a few weeks ago so I remind myself that's something. (I guess the auto-correct on my tablet has delicate sensibilities because it sure did change "b-o-o-b" to "booby". I haven't used that word since I was a little kid!)
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Lilylady - thanks for the info. I'm going to see my gp soon and discuss better/different pain meds. I have a harder time going up stairs, than down, but there must be someway to compensate like you do when you go down. I'll need to try different techniques sometime when I don't have an audience.
Dormouse72 - that's great you feel better on X. It's funny how differently it effects all of us.
Mauimom - sorry to hear about the nausea...I hope your dr can give you something for that.
I'm on Day 5 1/2 of Week 1. The funny tummy is more a gaggy feeling with some queasiness now. Food isn't sounding quite as good anymore and I even lost my taste for chocolate. Definitely more tired today and "weak" feeling in the legs. No signs of HFS yet - I've been very good about keeping my hands clean and using lotion, but I'm neglecting my feet because I'm lazy and they're harder to reach. I've noticed a burning sensation in my various mets so I'm going to assume that means it's working on those little buggers. I had my blood taken today to test my tumor markers, but it's probably too soon to see any response. Tomorrow is my last day of pills until my break and I'm hoping it doesn't take long to feel better, but I know from reading some of your experiences that it's possible to continue to have side effects. I've told the kids that we just need to be flexible and go with the flow because I'll never know how I'll feel and they're being really good about it.
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thanks! I'll keep you posted...in the meantime, apples are my food friend
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Still at the onc - waiting for my Herceptin drip. My doc agreed that my bad boob DOES feel softer so it's not my imagination. That with the few side effects I've had is keeping me on my current low dose of 2000 mg, 14/7 for at least this next round. The "twinges" may not be my imagination either - it could be that once the meds are out of my system, the cancer does creep back but each time it should creep back less and less but this is why she's still looking at possibly increasing. I have ad some loose stools (sorry if TMI) but not the full "D" and she's worried that it might become "D" with an increase so if we get good results with this, she wants to leave it like this as long as she can.
This is my first "30 minute" Herceptin drip - I have to take the train back to work so I'm hoping it goes as smoothly as the 90 minute initial.
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Tail end of 1st cycle week off with mininal SE's during my 2 weeks on (but I thought this may be due to the fact that I was on brain-mets related stroids which I stopped 2 days ago)
Now I'm full of aches. Had some chest pain last night (not crushing or anything- just aware of while I was trying to get to sleep) but my chest is clear and my HR & BP fine.
The one thing I have noticed big time over the last 2 nights is leg cramp - you know the overwhelming 'AAARGH' painful type where you wake up with your calves on fire and you know you have to stretch them out but that makes it worse before it gets better. Haven't had that since pregnancy (13 years ago!) and was wondering if that's anything anyone else has had?
Laurie
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I'm Starting my second day off after my first two weeks. The last two days I had a chest pain that felt sort of like a stich. Nothing serious but could feel it when taking in deep breath. It's gone now. The last day of my 14 days on, I broke out in a horrible rash on the side of my neck. The skin felt so raw it hurt to touch and drove me almost mad feeling itchy. The rawness subsided yesterday but it still itched. I've been putting steroid cream on it and took an allergy pill last night. It's still there this morning but a bit less red
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My last off day. Tomorrow we'll see if my feet and hands start feeling tight and tingly again.
No leg cramps or rashes here. Thankful for escaping any SE.0 -
Laurie - today, is the first day of my first cycle week off (7/7) and as soon as I woke up and stretched, my foot cramped. This was the first time on X that it's happened. I do sort of ache all over. It's not too bad, but definitely new. And, this morning, I noticed that it hurts to sleep in just about every position, which is new.
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Laurie and Cynthia -- My mom has been getting cramps, too, more-so on her week off of 14on/7off. She's had them in her stomach or side muscles when laughing, jaw muscles sort of clamping down, and neck when she craned her head around once. We mentioned it to the oncologists in our hometown and at MDA, and neither seemed familliar with muscle cramps as a side-effect, but looks like it happens!
We got good news yesterday at her onc appointment to review this week's scans. Things are stable! Sticking with X and Tykerb for 3 more months.
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That's great news karmakittie!
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Karmakittie - Stable is great news. Thanks for the info. on the cramps.
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I have pain in shoulders. I think from x. Strange how different we all r
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Good for your mom Karma! Thanks for the info
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KarmaKittie: Great news!!
This talk about cramps is very interesting - particularly about the jaw muscles. I have a bad habit of clenching my teeth. I don't grind, just clench. I've tried to stop, but not much luck. Anyway, it seems like it has got worse since being on X. I even get headaches now and I know it's from clenching. Hmmm....the things you learn on this board! I wonder if there is anything we could do to counteract stuff like this?
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Lynn1- I use to do that. It got so bat that I knocked my jaw out of joint and had to take muscle relaxers. Your dentist can make a mouth guard that you wear on your lower teeth at night. It keeps you from clench too bad while you sleep. It has really helped me
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Lynn - I'm a clencher, too. I've tried various mouth guards over the years, but I just take them out when I'm asleep so they don't help. Fortunately, I don't do it all the time anymore...maybe, I'm not sweating the "small" stuff anymore. lol I sure hope the X doesn't make it worse because when I do it a lot my teeth become sensitive to cold and ache at random. So far, just my legs have been crampy but I've only done a week.
Frapp - Good to know that muscle relaxers help.
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I have a question about prescription. My onc at a major cancer center only prescribes 14 pills then on my week off I go in for visit and she gives me new prescription. It seems like it would be a lot easier on my picket if I could get 21 pills (a months worth). How did your docs write your prescription for xeloda?
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Since I use Medco the prescription is for 3 months supply but they deliver one months supply at a time. They call and schedule a UPS drop off and I have to sign for it. Maybe she wants to see how you tolerate it in case she has to adjust.
Are you only taking one pill a day.......or did you mean 14 days worth of pills? On edit: I looked back, you are on the same dosage as me. 4000mg a day.
I take 4 500 mg pills in the morning and the evening. Day one of ON week, so far no HFS tingling. Crossing my fingers0 -
I meant 14 days worth. I take 8 pills a day (4000 mg). Sounds like we are on the same dose except mine is for 14 days.
Glad to hear you're not plagued with the hf. I had some rash that stated on the last day. I'm on my first break day 3. The rash has gone.....yay! Some diarrhea last night but I think that was due to some greasy wings I ate for dinner. Otherwise, I'm feeling fine. I'm going to like this if it stays this way.0 -
I like it over anything else I've been stuck with. I had a bad big D day on my 5 th day off. Go figure. I guess it's still in your system. So far on off days it's random fatigue and sleepiness to a big D day. Manageable, not always predictable.
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Frapp: Thanks, but my problem is I don't do it at night (never wake up with sore jaw or headache, etc.) - I only do it during the day. By the time I realize I'm doing it, my jaw is already sore or I have a headache. I know it's just a matter of breaking the habit and I'm trying but I have more success some days than others....not sure why. I really don't FEEL any more stressed out so I have no idea what is causing it...that's why I was so intrigued to hear it could be the X.
I get my pills from the pharmacy at the onc's office, and I can only get one cycle at a time. It's just like getting any other chemo -- have to make sure your counts, etc. are good and all before you get more.
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