All about Xeloda
Comments
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Stang, I can't say food is weird. I have been savoring some of my favorite things lately, so seems intact. Are you taking any other routine med's?
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I take Lexapro and Protonix daily. Today seems better - maybe it was the cold that was trying to take hold. I've slept so much in the last two days, I think I've headed it off at the pass. Don't feel quite so lethargic and tired today. Thank God! I was afraid I was going to be sleeping until Friday when this cycle ends.
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Supportive care doc says, if your body needs the extra sleep, get it
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i am on my 11th cycle of xelda and just began with left heel pain.... alot of fatigue, minor peeling in hands, let me know how you do
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K-lo, I take Provigil which is a long acting stimulant and use ritalin as needed like today when I went out with Susan the Super Girl (my 3 yo), DH and a friend. I was still wiped Shawn we got home, but I think the Ritalin helped me do more for longer.
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Hello Divas
My latest scan revealed that Falsodex is not the one for me.....phooey. I tried the Xeloda/Ixempra combo in early 2010, and never finished a full dose of Xeloda because of the side effects I was experiencing. Unfortunately, we don't know if it was Ixempra or Xeloda giving me the grief. So, I started Xeloda as a single agent on Friday and will scan again in 8 weeks. I have my bag balm ready, my ritalin on hand, and compazine too.
I have read through this thread (WOW) and look forward to joining in on the discussion. I see some familiar faces as well!!
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K-Lo,
Took your doc at his word and slep round the clock today. Funny (sad) thing is, Its 8pm and Im ready to sac out again after a rousing 2 hrs awake. Lets hear it for DH taking care of the baby today!
Wings - I hope this round is very easy and sucessful for you. Welcome to the Diva Lounge.
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Sorry for all thhe SEs and tiredness....I wish it was better. Hurray for sleeping round the clock and heading off a cold.
I am having my sternal met removed (part of the sternum will be removed) on Wednesday at 9:15. I am READY!
THEN....rads maybe and almost for sure I get to be a Xeloda diva!
Much love to all of you
Sue
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Welcome, Dana!! These Diva's are outstanding! LivingIt - glad you got some rest today. Mungie - welcome - wow, 11 cycles! Sorry about the heal pain and peeling hands - I hear ya on the fatigue. If I really get to switch to my Femara after my four rounds, can I still be a DIVA?
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Welcome and best of luck Dana and probably, Sue.
Zoh, thank you for treating yourself fairly. Hubby is a good guy. I will look provigil up. Have titrated (taken smaller doses over time) the Ritalin, so maybe that's what my body needs, slower distribution. Taking it all at 9 am makes me very productive....until 6, then I am done.0 -
Welcome Dana
No the Zometa I have no idea what the deal is for that, that is for the bones will see..Can't seem to get these SE's out of my system, eyes still watering and still peeling of the feet and they hurt....nausous omg so sick of this, haven't been on this stupid medicine since the 9th.....all i did was sleep all day yesterday.....going to the drs. next week hopefully the Xeloda will be completely out of my system and then we will figure something out!!'
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Sue, do you wanna talk about the surgery or anything? Is this the thoracic and plastic team?
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Hey Divas!!
Mungie: Welcome! Wow, 11 cycles and just now having side effects!! That is great, but sorry they finally caught up with you.
Dana: Welcome Diva!! I'm so sorry Faslodex did not work for you. I had such high hopes for that one myself and I think it failed faster than any of the hormones did.
Sue: Good luck on your surgery on Wednesday! Please check in when you feel up to it and let us know how it went.
I am still enjoying my break. I still have this entire week!! I don't start again until Saturday morning. I can't beleive the difference in just a week or so!! My feet look almost normal -- very little redness and hardly any peeling. Still a little sore/tender, but MUCH better. I even went to the local county fair with some girlfriends over the weekend. I had a back-up plan in place (someone to come get me) in case my feet hurt or I got too tired or something, but we hooped it up and had silly girl time for hours!! I know this is morbid, but everytime I'm able to do things like this, I just soak up every single minute of it -- the sights, sounds, smells, everything -- because in the back of my mind I'm always wondering if this is the last time I'll be able to do it.
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MORBID? I think its wonderful. That's the time when i feel well, hmmm, it is sort of a gift to be able to appreciate things fully. A lousy gift, sure. I do feel that way though, I'm getting to go see the Phillies up close in Atlanta. DH said, you can get tix for $5 up in the bleachers I said, well, that's not too much for a bucket list item..... Of course, you have to pick those carefully. I also want to go to Hawaii.
Scan results weird. Some stuff smaller, some stuff bigger, some new stuff. But she says as long as I feel Okay, I can stay on X. Lynn, I thought of you as my face started forming an extreme smile at no one in particular. There's a strange unspoken dynamic between us; she knows that i will refuse rough chemo. But she really played down the CT report. Ive never had ground glass or T12 lesions before, but she just asked me how I feel. Its just weird to have her dance around me. Next time Ill go alone and ask her to spit it out.
We have to come up with a song parody for Xeloda.......
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Sounds wonderful, Lynn. I completely understand - I appreciate so many things on so many new levels every single day. Keep soaking it up - taking it all in! Does a body good. Enjoy the rest of your much needed break!!
Sue - good luck with the surgery. I missed it here - let us know how everything goes.
Blondie - so sorry you are still having so many problems. I hope they can figure out a way to get you some relief and still remain on X.
K-loh - I like the some things smaller thing. Not so excited about the some new things - but it's early on X. Someone previously said it took awhile, so I'm glad you get to stay on it. Just have to tell you that I am no joining you in the Big D club. Holy cow - I have five days left of hopefully my last cycle for now and the Big D has reared it's lovely head. Everything I eat, comes right out within minutes. Trying just to keep hydrated and counting off the days until Friday. If scans come out good next week, I will transition to hormonal treatment only and come back to X down the road if needed.
Have a good week everyone!
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Stang: Sorry about the rotten SE. I hope you make it through to the end of this cycle OK.
Lynn1: You sound good. Im glad you are healing up.
K-Lo: WTF? I hate when they do that. Anyhow, its good that you are still among the Divalicious.
Im feeling like doo doo today. Further, I had a quick phone chat to my radiologist and he said he was on vacation when I had my MRI and PET/CT read. He looked again and said he didn't see any new spine mets and generally seemed to say that there was no progression on whatever damn hormonal I just finished and cant think of the damn name right now. OH. Tamoxifen.. sigh..
yeah, so my feet hurt, mouth sores start. Cant stay awake more than 90 minutes.. I will have to complain about any misreadings that may have happened.
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Zoh, no new mets, no progression? Ding ding ding hurray.
Hey just realized I had an old L1 lesion, probably benign. T12 is right next tom it, I'm thinking different doctor, different impression!
Keep resting darling0 -
Hey Zoh, Glad to see you back on the boards, sending good karma your way. Huzzah! for no new mets and no progression! Sleep well. Kathy - a song parody for xeloda - fantastic! Let's do it. SUE
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I'm sorry to no longer be a Diva
. I hope Xeloda continues to bring you all success and NED!0 -
Suze, I would like to declare that once a diva, always a diva. I was afraid id have to leave and didnt want to. So what do you say, Divas? Life time tenure? Once youve taken it, you alwasy have something to offer others and you may come back.
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i was out of town for the 'week off'. I was out of my element and didn't bring my creams, socks, gloves etc... What a mistake. My hands and feet hurt like hell when i got back (cycle9). A nite or two of soothing creams and I'm about back to normal.. I'll starte xeloda again tomorrow or Thurs. sigh.. so glad it seems to be working. not much appetite, but nothing worrisome. I took hydrocodone and the constipating action counteracts the diarrhea so that is good... and those little long pills really do take the edge off.
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Oh Apple, I'm so glad the lortab kills two symptoms with one pill. Hope your hands settle down fast.
When am I going to lose MY appetite? Everything tastes so good! No desire for alcohol, though, and must force myself to take enough protein as meat turns me of....... Still feel really lucky!0 -
Suze - I agree with K-Lo. You will always have something to help us "newbies" out.
K-Lo - What are lortabs? Are they for nausea? I have a prescription for Zofran but it does not seem to help a whole lot. This is my week off and I still feel nauseated. I am only taking 3500mg of Xeloda for 7 days and then off 7 but I still feel yucky and wondered if something else works better for some people. I go see my onco on Thursday so will run it by him also. It certainly helps when other people have taken something that works for them because we are all willing to try whatever can make this easier. I also agree meat seems to be the worst offender and I usually love chicken and turkey but to even think about it, well, yuck........
Lynn1 - I am so glad you are feeling better and had a chance to go do something fun like the fair. It can take us back to our childhood when we had no cares, and that is just what we need right now. I also know exactly what you are feeling when you wonder if we will do something again, but we can not think like that, we just need to say, "the next time I am going to do this or that", I know it can be hard at times but I still maintain, attitude helps us get through the rough times, it may not be a good attitude but that is ok, as long as you have attitude you are still here.
Livingit - I am so sorry you are having such terrible side effects. I feel guilty for even saying anything about being nauseated when you are dealing with so much right now. I hope you get to feeling better or at least maybe adjust to the medication, if that is even possible. I keep telling myself that is all I need to do is adjust to it. Take care of yourself and rest whenever you get the chance.
I don't want to sound like I am complaining, but if anyone has any ideas on what to eat that has helped them get by. I have tried the thing about eating every few hours but that did not help and I DO NOT want to gain weight, I just lost 25 pounds and do not want to gain them back. Also, I used the Bag Balm last night and my feet seemed to burn more when I put it on, is this just normal or could I be allergic to it. They sometimes tingle and burn a little but maybe that is just normal. I just want to keep ahead of the game and not have problems in the weeks down the road. I am open to any suggestions on any of this. Thanks everyone.
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Try udderly smooth if you can find it. As far as smooth, my friend bought me alot of crystal light to keep me hydrated and those little fruit cups and puddings to eat. I have lost about 10 lbs cause I have no appetite. I did buy freeze pops hoping they will help, not big ones just big enough to help with the liquids.
The SE's are horrible, and I did it as long as I can my nails are healing but the hands and feet are still peeling and the eyes are still watering, the diarrhea is horrible also, so took Imodium and it made constipated.....I was on 4,000 14 days on 7 days off....thank goodness he took me off, I was really depressed...
hang in there..
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Jeanne, I say Lortabs where Apple said hydrocodone, Lortabs seems easier, more familiar to me.
Do you have anything for nausea such as zofran? I take a half or whole zofran before the X in the morning or anytime my stomach or intestines feel bad. Seems to work. Many people take Prilosec, Zantac, or some other med for symptoms of reflux/acid. Also helpful. Anything to make life worth living!
I have some funky thoughts. Yesterday, Onc reviewed chest CT. Today I called to ask her nurse about the abdominal CT which had not been read yet. Onc calls this afternoon with her careful, pausing speech. Bottom line is that the T12 issue, my lower back, is more of an issue than she thought. I have had an L1 spot forever and they believed it was benign, now, this thing they call T12, is really the L1 or an extension of it and is bigger. Getting bone scan. She ended the call with the voice of compassion, you know? Hate that voice
So I emailed her and said if she has a strong feeling about it, to tell me. I can take what she tells me, not what is left hanging! ............ya know?0 -
Jeanieb2: Compazine can help when zofran doesnt. I have been on both at the same time when I had bad nausea.
K-lo. Bad news I must say. My doc always Zaps bad spine mets with rads. I have to say, even though the word is that rads are for pain relief, I havent had any further or new growth once the spine tumors were radiated. Maybe this is an idea for you?
I HATE the voice of sadness. It is so much worse than any news that my doc gives me. I find myself telling him to cheer up sometimes. Are you having back pain dear? I have some ideas for that if you wanna hear em. Love you dear.
I must appologize for my big drama post about my side effects. The fact is that my SE's are very mild. Yes, I have a mouth sore, but its only one and it is the size of a grain of rice and has healed as of today. So, ya know. I really was just moping.
I was planning on going in to speak with the radiologist today to get clear on what is going on with my last scans. Is there progression? Do I need to go back to tamoxifen or did I need to get off of it? I dropped my son off at school at 8:30, came home and played with my daughter until about 10:30 and between one breath and another started to feel like I had just taken major sleeping pills. So i planned on taking an hour or two nap and then going into town to talk to the doc. My alarm went off, my husband came in to wake me, but I slept until 5:30 anyway. sigh.. So, I am up now and feeling great.. shees! Feeling sleepy and being able to crash whenever I want just isnt the end of the world. Further I got my provigil rx refilled today so tomorrow Im sure I will be up and about.
No worries here my lovely Divas. Live is good.
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Zoh, you want the facts though, don't ya? You can deal with the facts. :-)
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Off to surgery...will post when I can. Thanks for good thoughts and yes this is the thoracic and plastics team. Much love to all of you!
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Livingit.. your post is just adorable.. so positive.
Jeannieb2 my favorite foods to eat are rich and bland.. i only want to swallow so many times (and don't take that out of context). i haven't really lost any weight altho I am on the low end of my parameters.
cottage cheese
scrambled eggs with cheese..a little milk added to make them a big creamy
cream of wheat (yum) with butter
rice or tapioca pudding (i'll actually make these they taste so good)
avacado
jello
cheerios
sour cream (just a bit on anything to make it smooth)
yogurt smoothies altho they are a bit of trouble
peaches and cream
I wish i liked bananas.
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Wish I liked to eat cause I like some of those things, can't stand oatmeal....do eat eggs though, gonna try french toast in a couple and have zometa today who knows what tomorrow will bring. Wish I could smell and taste, really takes the fun out of it.
Livingit, we do what we have to don't we.....have compazine and zofran like the latter better, but the ole loranzapam works for me better.
Gonna rain here for the next couple of days, homecoming is this weekend, love football!!!
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