All about Xeloda
Comments
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I am so glad so many of you are doing well on Xeloda. I started a thread about my new treatment called Between the devil and the deep blue sea...... he told me there is a 20-30% chance for this one so I sure am hoping I am in the %.
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That is sweet, JJ. Marybe, you can take on that devil. I feel sorry for it, really. Youll just dust your hands off and say,"next?"
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Hi X Gals,
Lol, didn't even realize I was on Xeloda till this week. All my packaging and the DR calls it Capecitabine except the actual pill pac foil.. which I never read until this week. I'm 14/7 at 1650 mg twice a day. I'm 125 pounds so I'm guessing the dose is weight related. Onc said I have room to take a higher dose still but are leaving it at this until my first CT scan (Dec 20). I'm currently halfway through cycle 4. Would have been nice to have realized this was the drug I was on from the beginning, but I'm doing ok on it compared to all the other chemo's.
I definitely am dealing with fatigue & hair thinning along with loss of appetite, a bit of nausea and just a bit of feet issues so far (dry feet, a bit rough with the occasional hot feet flashes) But really its all tolerable. I think the fatigue for me is the worst, but I'm also on Clodranate/Clasteon (might be a different name in the US) which also causes fatigue & loss of appetite/nausea.
I'm really hoping this is working, the fluid that they drain from my Pleur X drain has gone from 800 mils twice a week to 460 mils each time. If it keeps up I will be able to have it drained just once a week (ahhhh freedom) I also think the cluster of tumors at the base of my throat are shrinking... They don't seem to be quite as visible, as I used to be able to actually see the bump in the mirror and now I have to feel for them. Crossing my fingers that its not my imagination
Hugs Suz
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Questions for all you wonderful women -- I am in my fourth cycle of Xeloda (3000/day) for liver and bone mets. Recent scans show that the med. is working -- great --- but I am experiencing what I hope are just expected side effects and I wanted to check them out with you all. I do have some hand and foot but I am coping with that okay but I am puzzled by the weird lapses in memory (I had to call my husband the other day to remind me of what my SS number was - that was weird), bouts of tearfulness and episodes of intense hunger that I seem to be experiencing. I haven't said anything to the onc. about these things because I am a bit embarrased and in reality, I am moving on like "normal". Have any of you experienced these things while on Xeloda? Thanks much, Joani
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Hey, Divas...I've been MIA since finishing my four rounds of X back in September, but I pop in periodically to check on the divas. Just a quick update - had three month scans this week, second scan since stopping X and I'm still NED! Still rockin' the Femara and hope to be for a long time. Have a very Happy Holidays to all of you!
Mustang Sally
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Tearfulness, oh yeah. I was mega-depressed on the old X. I don't recall memory issues any more than your usual chemo-brain, but you might mention it to your onco.
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Hey, Stang, what great news. Thx.
I agree that the X is unpredictable. Knock on wood, no hfs here.
Then again when your medication list is a page long, who knows wtf causes what. Decadron might push me over the edge with mood and energy swings.
Also don't know for sure if memory problem is meds or the deep disturbance of it all.
Exercise though really does help. Get me to Y somebody.0 -
Hi Joani, I'd mention the aide effects to your onc. No embarassment neceasary. Anything is possible on these drugs and perhaps he can jelp you with the side effects.
Very good news Mustang Sally! Great to be NED!
Suz: I hope the Xeloda works great for you too. Would be nice not to have to be drained, Im sure.
Marybe: we are all wishing you the best. Thinking of you.
Judie0 -
At JH conference the doctor couldn't explain chemo brain but said it is real. You have to wonder about the state of your mind every time this rather serious condition resurfaces in your thinking. I keep it closed away as much as possible but it is rather a big deal! Why wouldn't we be loopy and distracted?
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Loopy and distracted is me on a GOOD day, K....and I'm not even doing X right now, just the crawling-in-gravel relentlessness of one's last few rads. My skin is still okay knock on wood, but have pain deep in breast mounds where the radiation is going in from the sides and also in left armpit where I had positive nodes (2) at initial diagnosis (and they are radiating it again). Am wearing compression sleeve preventively and doing some massage when I lie down for the night. So far, no problems. My goal this week is to GET OFF MY BUTT and resume getting some regular exercise. I am going to walk my dogs for 30 minutes in the morning and 30 minutes in the evening. I may have to work up to this but maybe not. I just think it will really help with the depression, which I am trying NOT to treat with the anti-ds this time. I have seen a counselor once and will be continuing weekly visits with him, he's nice. The Christmas Play was tonight, it was really good. The whole day was like a love letter from God, everywhere I went I was surrounded by people who have been volunteering their time for weeks to bring this into existence. They literally would not let me lift a finger to do any physical work. I felt bathed in the love and support of my community, I felt like this is the way it is supposed to work and I am going to never forget it. The kids were great, these are a very fine group. It was a joy! BUT I am SO GLAD IT's OVER because now I can squeeze in a trip to Montreal to meet Nolan my new grandbaby. I leave on Friday after my rad and they gave me a later appointment on Monday. Tuesday is my last one!!!
Thanks for letting me ramble. Much love to all of you. Marybe, stay close. We love you.
Sue
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Sue you are going for positives! I wanna do that I don't wanna give in to misery! Keep it up. I too think that at least walking is making life better. If I say exercise its more involvement in my mind. But walk....walk a little more....oh yeah walk over there....easier.
Way to get to that baby!0 -
Hello Divas, Hope everyone is doing well. I only read this page since I don't have a lot of time before,jumping into the shower....Did I say jumping, I mean slowly meandering.....nothing I do is fast these days since I got the Adriamycin last week. I honestly do not even know if fatigue is a SE from it or if they overdid it with the premeds, but I have been sleeping sleeping sleeping.....bet I got more time in this past weekend than I had for a month since I always got by on very little sleep. Sally, That is really great news....so glad the faslodex is working for you....do you get the double dose? Joani, Chemo brain most definietely does exit....how can it not? When you stop to think of what the meds are doing to the cancer cells and we all know for a fact even though they are working on it, they are not giving us drugs yet that only affect the cancer cells, how can they not affect our brain. I have found it is worse on some chemos that others, but it happened to some extent with all of them for me.....failure to come up with a name or a number that I had known for years, not being able to remember where I put something. losing my appt card or ticket to the parking garage before I even got to the car, and the very worst was one time when I was in the car and thought I have no idea how to get where I want to go....this was because I was going a different route and I actually had to go back home and start over because I knew how to get where I wanted to go from there. Scary? Heck, yes. I actually asked to be tested for Alzheimers.
Suz, the onco I consult with at MDA always uses the actual names, onco here uses the more familiar ones.....the names can be confusing.
KLo and Judie....thanks for the good wishes and faith that this one will work for me. Other than being tired I have not had any SEs, but I have only had one dose. Tomorrow I get my 2nd and we will continue weekly until we do scans again.
MJL, Nice to see you....how is the new treatment going?
Sue, Have fun in Montreal......I want to go to Canada one of these days and use that passport I finally renewed this year.
I am still managing to work, but only because I have bosses who are willing to work with me and I have subs who will fill in when I am not up to it. Although I have been talking about it for years, I am finally going to cut down, way down and go on SS in Feb since my birthday, the big 62, is at the end of this month.
Have a good day everyone.
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Have drs. appt tomorrow and zometa the next day, really want either another bone scan or a PET scan which I have never had done, did have a bone scan but my back (spine) has been hurting and I know it is my neck and that hurts also, also my pelvis....I like to know what is going on....
Marybe 62 good for you!!!
7 days off, love that!!!
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Day 14, just took my last batch of pills for cycle 4. The se's are definately more aggressive this week. My fatigue is way up there today & hfs is becoming much more noticable, worse on the feet, but my hands are starting to feel kinda numb & tingling. I also am noticing a few brown spots on the bottom of my feet and one showed up today on the palm of my hand.. dont know if this is a se or not??
Guess Im going to have to start hunting for all the creams I was using for rads & taxol. I know there around here somewhere. I used a foot therapy cream thats for dry cracking heels this morning, but I think its got too many irritating ingredients in it.
I get my ct on the 20th so if they continue me on this I might ask about the 7/7. The difference between cycle 3 & cycle 4 was really noticable.
Hugs Suz
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i'm going to hide my little whine in this here thread.
as some of you may know I am a church musician and have been trying to quit my volunteer (awesome) job to get a paying one which be easy enough. My playing is not what it used to be with these Xeloda brain farts, stiff hands, peeling fingers and fatigue.. Still, i have to prepare 20 pieces for Christmas.. why am I staying? and why won't they just pay me 100 bucks or something? I'm going to cry. They can't replace me with a volunteer, and the budget is the budget.. and they will eventually find some one and pay him.. so much work and so little time.
2 more days of xeloda then i get a break.
waaaah.
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That must really sting, not to get paid at all when you put so much into it, when you've frankly got enough on! Its horrible when people take you for granted. Do they know you're in pain? Reasonable whine imo. Kind soothing appreciative thoughts coming at ya!
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I am paid elsewhere.. and early on agreed to build this group.. Sometimes it pisses me off tho. I've built this group and it is absolutely awesome now..IT is huge, with 30 singers, 8 instruments and director from hell that I hired.. i love her tho. she's just about my best friend. (a former military seargent i might add and has a doctorate in choral conducting.. she got my money)
... i must say. it kind of hurts to leave it.. it's stressing me out way too much.. but you know.. gotta do what you gotta do.
"you better kiss me
because you'll miss me when I'm gone".. that's a song.
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Suz-I can totally relate. I am on day 11 of cycle 2, and I woke up today to some very sore feet. I have been using tons of udder cream, so my feet are silky soft but so hot and red and sore! I see the doc Thursay, so I guess I will limp along until then.
Apple- that's a tough one because it sound like you love the unpaid job but are feeling unappreciated. Sorry.
Cancer. Ugh.0 -
Apple we take everything someone like you will give. Glad you're gonna take a stand. After a huge Xmas. :-/
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Doing 7/7 but still using udderly smooth all the time on my hands, which are red but not peeling. The dr. asked me today how it was and said red...showed him....haven't checked the feet tho....am on the 3rd round of 7/7 and wondering if it will come back after a while!!!
Have to get a bone scan, my neck which it is already in is hurting but spine is now also....cancer sucks!
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indeed/.. it sux
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Sisters I'm stopping in to reassert how lucky i feel to be on X. My new little beasts showing up are treatable while on Xeloda, whereas they would have to stop some others in order to proceed with Rads.... and having to check into infusion tx for port access, waiting slow chemo tx would really add too much stress and fatigue.
Counting my blessings, hope you get some too.
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But I cant stop pigging out. I stuffed so much pizza it hurts now im on chocolate. could be decadron but i also doit when anxious and cannot admit it.
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New and wetched side effect of the xeloda - the tips of my fingers are split and bleeding everywhere! It's like having a deep papercut on each finger tip - what a pain in the butt! And I've got little red drops on everything I own - enter the bleach pen. Extremely painful. I'm assuming that this new development is related to the cold weather than has finally set in here in Baltimore. The world seems to be designed for hand dexterity - opening medicine bottles, food packages, typing on the keyboard, putting in the earrings and so on. Trimming the xmas tree (pine needles) was particularly infuriating. Apple, I hear you - playing the organ and piano must be such a struggle. I guess even more creaming of the hands is in order - oh well. Onward! SUE
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Oh sue I had that. I'd use EMLA to numb it gloves to protect still horrid. Dose decrease asap? B6?
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sue.. i go thru a jar of aquaphor about every 3 weeks.. a big jar. I'd order those nylon inspector gloves and wear them all the time when possible.. the cream washes and comes off so easily. I had a really bad week when i was visiting my sis.. totally out of my routine. But my hands re vived themselves after a week of pampering.
i want to stay on Xeloda as long as possible.. it seems to be working for me.. side effects can be managed and ignored.. not so with cancer. Sometimes a nap is the only way for me to ignore that hand and foot pain..
(Oddly 'playing' does not hurt them.. I practice with gloves and only take them off for the public. They are a bit stiff but oh well.. only mydirector from the military notices. Actually i am quitting my hard job.. too much stress (that'll teach her) and taking on more delightful children students. teaching is a blast.)
Sue,., i have blood drops all over my sheets. (well, in some places.. i apparently scraped my elbow and never noticed even tho i cut my hands at the same time.. a clumsy fall on the gravel). I really need to wash them but would rather take a nap (or teach). I better get out the SHOUT.
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Sue, Im really sorry, that sounds aweful!
K-Lo, EMLA is it a prescription... I have Lidocaine
would that work (just in case the red burning feet & hands get worse next cycle) trying to be prepared now.Im 2 days off X and am feeling so much better, but am starting to worry about tues scan... really hope this is working! Hopefully they wont make me wait through the holidays for the results.
Hugs Suz
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Hey Suz yes EMLA is rx. I'm worth it! I use it before port access have even had to use it in my mouth. Doubt lidocaine is as lasting or penetrating but certainly can numb.
Apple your work change makes me so happy.0 -
Hi There Divas! As many of you may remember, Ive been off X for some time, but once a Diva....
I am wondering if my dry hands/feet/body are long holdovers from X or if they are releated to something else Im on... I use aquaphor or even bag balm on my entire body at least daily. Its intense and pretty painful at times. Just curious on your take.
Zoh
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Sue and K-Lo and Apple: I am so sorry that you are having such a bad time with the hand foot thing. It sounds SO painful and awful. I wish you all could get some relief.
Zoh: I think I have read on here about some women having the hand foot for some time after X. but not certain on HOW long. Others maybe can tell you that. Hope it clears up soon.
Marybe: Glad to see you posting. I recall that The Red Devil really knocked me out. I had it when first diagnosed, so got it once every three weeks. I was exhausted from it. Its a tough drug but a good cancer killer. I am so hoping and praying it is killing your cancer but good! GO RED DEVIL!!!
Judie0
