All about Xeloda
Comments
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Well, I guess I screwed up on my pill count again even using the pill box.....today is day 12 of the 2nd cycle and I should have two extra since I put them all in one bottle and had the two left from the last time when I must have forgotten. BUT I am going to have exactly enough to be finished on Wed. PM so that means I must have overdosed one of the days. I guess I need one of those keepers like they have in and assisted living places who dole out the pills in the little paper cups. So this morning my fingers look sort of puffy, light red down to the lst digit (counting from the tips of the fingers so maybe it is the last diget, but the one on the end I am talking about) and lines and finger prints are very pronounced, but no peeling. The one finger is a little sensitive since I have been typing all morning and my thumb nails are tender to touch, but that is about it. No diarrhea and no other SEs. Muscle cramps seem to have gone away and I hope they stay away. Because of the bag balm, my hands are super soft.....one friend said OMG, just like a baby's bottom.
K-Lo I forget if I told you, but INR went down to just 2. from 5 after being off warfarin for just two days.....so it is definitely erratic. I started back on it Friday and am now taking 5 mg daily and will have it check on Wed. I see my cardiologist and if she will go to bat for me maybe I can get on that other pill.....if not I hope I can get my own little machine. Since I am going to be on vacation for over two weeks, if I don't get a machine, I am going to take a RX with me so I can go to a lab and be checked while I am away. I was so hoping to just have one margarita with the gals, but don't think that is going to happen.
I am certainly not gaining weight on this.....have lost about 4 lbs since starting and I am eating anything I want and still can eat a lot when I eat, but I am not really hungry like I have been in the past so I only eat when I think I should.....it's like Oh, it's dinner time, I better eat something, but the desire isn't all that strong......highly unusual for me since I am normally a foodie. Maybe it's the fact I no longer get steroids in a premed as I was doing for a long time.
So did anyone do anything fun this weekend? I went to my Dad's, but came back yesterday since I have an ailing cat. Today is is downright chilly here so I may put on a sweater and go out and work in the yard for awhile. The big fireworks display is here tonight, but I never go because parking and the traffic are always a mess.
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Yup, had great fun this weekend. Went to Phillie, stayed in a nice B&B, ate a whole Phillie cheese steak (!), rode "The Ducks", put my poor red feet up on a pillow and read British mystery. Tomorrow back to real life - hope everyone had a nice holiday too. SUE
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Re: extreme pain with HFS. It's kinda like porn -- you'll know it when you see it LOL.
You know you got severe HFS when...
you count the steps from your bed to the bathroom.... and limit your liquid intake so you don't have to walk that far that often.
You only shop stores that have the scooter carts.
You've got at least 5 different types of skin cream, one for daytime, one for nightime, one where you skin is bleeding, one where the skin is just bright red.
You can't turn the key in your front door lock, or open a can with a manual can opener.
You soak your feet in the coldest water possible, because the cold numbs the nerves.
You take vicodin or vicoprofen before any outing involving walking.
You cry loading the dishwasher
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Oh MJLToday: I really feel for you. My miseries not so bad as those you describe, but definately share in some of the aggrevations and pain, especially when I try to turn a doorknob. Have you spoken to your doc about adjusting the meds a little bit? I was on 14 days on/7 days off, and the doctor moved me to 7 days on/7 days off, and H/F stuff is a bit better. Wishing you the best.....SUE
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Marybe, amazing drop in INR. Doyou have to break a pill to take 5mg? I take 4/6alterante every other day. DH helps me keep track. OH and I had an odd leftover amount of pills, so maybe its possible the pharamcy miscounts or sends extra in case you drop some?
MJL: that aint right! Its supposed to quality of life, not torture! It sounds like my doxil experience: severe toxicity. Something surely can be done! How long can you stay like that?
NOW, ME:
Fun in the form of birding (we found a crazy spot here), napping, eating, napping, rearranging house (small things), and snarking down fried chicken as we assumed our power would be out forever and we deserved comfort food But we have power! 0 -
FYI: Health tip, Hersheys kisses in large amounts do not, i repeat DO NOT cause more SE's.
Marybe, I have enjoyed virgin margaritas and virgin everything else with friends makes me feel like a grown up just like them!
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Fun weekend stuff - went to DC and hit up the museums. Ate too much, drank a little more than I should have, but also walked a ton!
I think I exacerbated my feet a bit, actually, had some minor blistering and peeling, but probably due to all the walking. I stopped my Xeloda a day earlier because I wanted to feel better on my trip. I'm on a 2-week break this time, so I'm going to enjoy it!
I seem to be getting the less common side effects - my joints are really killing me, especially my wrists and neck, and I have the depression also.
K-Lo - I like your tip. In fact, I'll go a step further and say that they help alleviate SE's when eaten in proper quantities!
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Do any of you have a "pressure" feeling under the boobs? It's a wierd feeling like I have my bra on and it's tight. LOLOLOL , but I am serious, it's happened ever since I started Xeloda.
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Wow...as someone has said before, this can be a fast-moving thread!! Will try and catch up - hope I have not overlooked anyone...
RetrieverMom: I'm sure you know more about this than me since you've been doing this over a year (congrats on that!!!) but I thought avoiding heat was one of the tips -- wouldn't using the plastic bags keep heat in? I could be way off, but just didn't want you suffering if you could avoid it. Have you tried it without the bags?
Apple: Where are you flying to??
Jeanieb: I hope I'm on it a long time!
Mustang: It is gross to me too to wear socks to bed - and gloves - that's why I have never made it an entire night. Somewhere in the night they get removed. I figure at least some is better than none!! I hope you feel better now. I will keep the hydration tip in mind. I need to drink more water anyway!
ArmyAnn: Welcome!! I was on Femara for 5 years. I miss it so!
Blondie: Sand! What a great excuse to go to the beach!! Seriously though, how do you "use" it...just rub your feet in it?
Marybe: I hear ya on the pill thing. I'm going to have to get another pill sorter so I can do 2 weeks at a time I think. I KNOW that I took all my pills...remember I even freaked out thinking I had missed a dose one night...I do not forget. I sort them out every Sunday for the week. When I went to sort this week, I should have only had enough for Sun-Tues. I have FIVE extra days worth - 20 extra pills!! WTH? Next time I am going to count them as soon as I get home. I swear they HAD to have given me way too many pills this time!! There is NO WAY I forgot that many!!
Renee: No, I don't have that one...at least not yet. Hope you feel better soon!
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my feet are itching like crazy. I'll have to soak my feet and watch tv all nite..
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Rene,. Could it be acid reflux, or Gerd or any of those other digestive problems? I never had heart burn in my life and always had a cast-iron stomach and could eat anything, but I foget what chemo it was that started acid reflux with me, but it never went away.. The first time I had it, it felt like I had this really tight rubber band going around my chest...it has since progressed to feeling like I have an elephant sitting on my chest. Protonics worked for a long time, but then I progressed to nexium.
Today was day 13 and I took my morning dose with a bagel with peanut butter on it since today was an early day at work....(.I can't believe people want to have their teeth cleaned at 7AM, but those appts are always full) ...and I wanted to get something in me fast so I could take the pills. I was going to take my doxtcycline and HCTZ , but for some reason did not take them all together and had them on the counter by the coffee pot so I would not forget......well, I was all the way to work when I remembered the other pills, and I do not recall taking them. So I waited until about 8:30 to call home and asked my husband if he saw them anywhere and he did not. So I still don't know if I took them or not, but am sure the cat or dogs would not eat them. Just another one of life's little mysteries. I take another doxycline in the evening along with my nexium and my warfarin and just took those.
I was having muscle spasms at work today in both my fingers and my toes. More annoying than painful.
K-lo....my warfarin comes in 5 mg tablets....they look like little orange footballs. When I am taking 7 1/2, I take one 5mg and half of another one. But now I am on 5 mg daily until I get it tested again tomorrow. Saw the cardiologist tonight and she gave me a Rx so I can go to a lab when I am on vacation. She explained why that other pill is not for me....it sounds good, but she said the downside is that once you blood is thin on that one, it stays thin for a long time.....so they are only using it on older people with A-fib. I like the new avitar.
The socks don't bother me....I am one who always wore socks to bed....also cannot sleep unless I have on underpants.....just a one of my idiosyncrasies I guess. Now the gloves, they do feel strange to me, but there was only one night I woke up and I had taken them off....odd thing is I had taken off my rings also.
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Rene,
I usually never have Heart burn or anything like that but one fay last week I did get a weird burnimg pressure type pain in ,y chest whicj I assume was heart burn ncause it wemt away agyer awhile. Could that be the pressure you are feelimg?
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sorry i am on my IPad and this keyboard makes me nuts!! Sorry for all the errors!
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Judie - they say if the first and last letter are correct that we have no problem reading them. (anyone else got that email?). So I did not notice the errors except for one word, had to go back and read it again to see them.
Marybe - is that an extension of the admonitions from our mothers? (always wear clean underwear, you never know when you are going to end up in the ER ...)0 -
good morning, Big D. Immodium, tea, toast ...........
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Hey K-Lo, I can relate. It's such a pain doing the balancing act with the Big D vs. Plugged up. I take anti-diarrheal pills which work fine but if I'm not careful, I won't go to the bathroom for days and that doesn't feel good either.
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Sppon, I say PLUG IT! I can go out with constipation, not the trots. We were birding the other day, i had to potty in the woods which is liberating, but if it was the Big D, ick!
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Hey Kathy...love your new avatar!!
I agree with you....give me constipation any day over diarhhea. While it can be painful too (like this morning for me...sorry TMI), at least I can continue on with my day. Hope yours resolves soon!
Today starts my off week! Yay! Scans on Friday....I'm anxious for the results already!
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I just had my pet-scan. Now onto the inevitable scanxiety. UGH! But that's part of the deal with Stage 4, right? I just walked 3 city blocks back to work in slippers, yup I'm a tough guy, but my feet started hurting 2 days ago and shoes and sneakers hurt to put on. I pray to God the Xeloda is working. I will be soaking these bad boyz in Johnson's Foot Soak tonight. My feet feel great after using it, it is so creamy and so relaxing.
Marybe,
I do have Gerd. But it isn't the same feeling. Who knows it could be some other strange s/e. But the more I read your reply, the more it applies to me. hmmmmmmmmmmmmmmmmmm
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Renee: When do you get the results of your PET scan? I hope it is great news for you! I'm going to have to look up tat foot soak!
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I can get them tomorrow if I look them up. I work at the hpospital where I get my treatment. But I no longer do that. Soooooooooooooooooooooo I will wait until next Wednesday. Try the foot soak Lynn, you will love it.
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I don't know how you keep from not looking!! If I had access, I'd HAVE to look! I get my scan results next Tuesday - we can have scanxiety together! ;-)
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I know!!!!!!!!!!!!!!!!But I have gotten bad news and had to endure the wait for my Onc's plan. So I rather get everything at once. Yep we can be scan buddies!
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Hello everyone!!
Enjoying my week off. TM's jumped up a bit this week, but my Onc is not worried, so neither am I. Talked with him about all the wierd muscle spasms I had last week, said it can certainly be a random side effect and is not terribly concerned as it happened in multiple spots (biceps, toes, back, neck, shoulder, sides..you name it - it traveled!) One more cycle (starts Saturday - boo!) and then scans on September 27th (Pet/CT) with results on September 28th. At that time, we will decide if it's more Xeloda or switch to the AI (Femara and Xgeva).
Still no HFS - so sorry so many of you are having issues with that. I guess my random heartburn, muscle spasmy thing is my sort of Xeloda torture.
I can't remember who said it about the appetite (this thread does move quickly), but I agree - somedays, I have to remind myself it's time to eat. Haven't lost any weight per se (I lose while I'm on and then gain it back on my week off), but am stable there, so that's good.
Renne and Lynn - Thinking of you as you await the results to your scans over the next couple of weeks. Scanxiety sucks - thank god for Xanax.
K-lo - Ugh on the big D - I tend to go the other way like lynn - off and on constipation. Hope you feel better soon and I agree - love the new pic!
Judie - that pain you are describing sounds like the way what I'm calling my muscle spasm thing felt when it was on the sides - top of rib cage, side of my foob right where my bra sits.
Marybe - I had extra pills this time too (more than my skipped dose), wierd. This should be last day for you, right? Enjoy your week off!
To anyone I missed - hope you are all doing well.
Mustang (still hate socks at night and won't wear them) Sally
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Renee: I understand, but I'm too impatient - I'd look anyway!
Like when I go for my MRI tomorrow, I will get a copy of the scan on CD before I leave and I'll go home and compare it to the last one. I would really prefer to know in advance so I can have time to let it sink in and think of questions to ask. When he tells me right there, I get so upset and all that I always think of so many things after I leave!!Mustang: I hope you can switch to the Femara soon! I was on it for 5 years and miss it so! You are right, we all have different ways that X "tortures" us!
I have also not lost any weight (although I'd love to).
So this morning a very large piece of skin came off my heel. Yikes! It is like a sunburn peel, but thicker. Now that area is rather sore and raw feeling.
Does anyone know if I should do anything when these very large areas come off? I've been just running some hydrogen peroxide over it to make sure it dosn't get infected, put on a little Neosporin to hopefully help heal, and then slather on lotion. I'm wearing socks today with Keds tennis shoes (and really pushing the dress code here at work!). I thought maybe I should put some gauze or something over that area to "protect" it, but then I decided not to. I don't know!! What do you all think? Thanks!!
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of utmost importance...........
i too ALWAYS wear socks and underwear to bed.
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For the record...while I won't do the socks - I, too, always were underwear to bed.
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Renee - I'm with Lynn, I'd be looking
. My MO is great though, she calls me either the night of or the day after ANY test, regardless of good or bad. I told her I'd rather get bad news at home, where I had support and could deal with it any way I wanted. Lynn - hmmm... if the newly exposed skin isn't tender, I'd probably just do what you are doing, a little hydrogen peroxide, a little Neosporin, and treat it nicely. Maybe ask your doctor the next time you guys talk?
Mustang - LMAO! Yup, GOTTA wear underwear, heh. But I don't do socks either. I was surprised when the gloves stayed on the whole night!
Enjoying my extended break, although I'm trying to step-down my Ativan dose and dealing with SE's from that, so still off. Blech. I finally caved and bought a wrist brace for my right hand, and that has really helped with the joint pain there. But it is definitely awkward. And with my left arm LE sleeve, my right wrist brace, and my hobbled walk, I look like the oldest 42 year old out there!!
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Where do you all find these docs who call you so quickly?! I'm so jealous!! Mine insists on seeing me in person to give the resutls, and if I have to wait till he's back from vacation or whatever then that's just the way it is. This time I get to wait alllll weekend! Bah!! If I had my way, I'd get the results as soon as I popped out of the machine!! Maybe I need to talk to him this time and ask again if there is any way I can get the results sooner. As many of these tests as I've had, I can read the reports just as well as he can!
The new skin IS tender - feels "raw". I did end up placing some gauze over it today and the extra "cushion" does seem to help some. I am determined not to let this mess up my new walking program though. Guess I'll just have to add more padding before I go. I will ask next week what he suggests as far as treating these areas.
I hear ya on the wrist brace Suze! I had to wear one for awhile when I sprained my wrist and while it did help, it took forever for me to get used to wearing it. Typing was especially hard!
Oh and Suze, you and I are the same age too!!
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Reneepals,
I have had that feeling under my boobs since I was diagnosed. Doc said it was my tumor causing it. I never wear a bra, except when I go out. But many nights I tell myself I need to get this bra off and I am not wearing one. I can't blame the pressure feeling on Xeloda because I had this pressure feeling way before. It comes and goes. Not constant but it sure feels like you have on a bra 2 sizes too small.
Gigi
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