All about Xeloda
Comments
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Apple, I thin it means morning "constitutional" at 1:38 AM ???? Been there, just try to not look at any clocks.
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Hi everybody,
I don't get time to post very often but I do try to keep up with everyone but things move so rapidly on this thread, sometimes it is hard to keep up; but I do think about each of you and hope for the best outcome for all.
I have just finished my 9th round of X last Friday and am enjoying my week off . I do 2 on and 1 off at 3000mg a day. Compared to some of the trials many of you have been through--I have had it easy. I have found that each cycle is different--sometimes I am a bit constipated and others a bit loose but never the big D. I can always count on tender feet and I have had some skin peeling and am about to lose the nail on my big toe and three lesser toes have dark nails which I guess will pop off. My hands are a wreck with thick hard cuticles and peeling skin on my fingers despite being slathered in bag balm most of the time and I wear gloves for dishes & household cleaning and ranch activities.
One cycle I am exhausted and have to sleep all the time; but then, other cyclest I feel like there is a spring inside me wound up tight and I can only sleep about 6 hours and have taken on major projects I have trouble finishing going thru stuff so DH & the kids won't have to do it after I am gone since the my liver is chock full of tumors and my TM's are bouncing all over the ceiling so the X may not be working anymore--will know when scans are done on the 20th.
I just don't want all the newbies to be afraid of X because for some of us it is doable and I am so sorry about all those who have major side effects, it is so disheartening.
Thanks everyone for letting me share and being there for everyone when we need it the most!
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my 'new' soon to come Xeloda shoes
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Apple: those look WARM! Enjoy!!
Good news today! I was doing my pre-registration for the scans tomorrow morning and they asked if I had any questions. I asked again about the no-carb thing because one time they say one thing and the next time it's something different. So they gave me the number supposedly to the main buidling there -- oops, they gave me the number DIRECTLY to the PET scan!! I'm saving that number for sure!! Anyway, I got to talk directly to the tech who does the PET scans. I told him that I keep getting conflicting info and what was the real deal here?! He said since I am not diabetic, it really does not matter what you eat the day before....if you fast after midnight your body will have long since processed everything by the time you get to scan place. That is what I always thought -- 8+ hours later, there can't be much left in there ya know?! I'm a happy girl today though with this news!! Now lets' hope the good news continues on Friday!!
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Love those apple colored boots.
Yes Big D visits me at 130 am sometimes. Have to agree.with Maryann; no predictable pattern for on off here either.
Lynn way to rejoice for every positive bit of luck.
I won a big drawn out thing with my rx insurance today. Its not a lot of money, but I stuck to my guns and at least got an apology.
Next is the bra store that is charging more copay than the bra is worth..........
Latest sx are asthma-like. Pushed docs for you pulmonary function test tomorrow. They expect me to live with unnecessary symptoms? Not if I can help it!0 -
Oooooh I love those boots, Apple!!! I started wearing Uggs during my Diva days and never stopped. Well, cheap knock-off Uggs but the real ones are on my Xmas list.
You ladies are wonderful, so funny despite the miseries that come with the big X. Happy Holidays to all.
And Lynn, fingers crossed for Friday! Maybe a midnight snack too?
xoxo
Rose.
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Xeloda is X rated..
sometimes it's good and sometimes it's bad.
working for me but it's a big pain in the X rated booty i have.
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X as in Xtra LARGE
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love those boots, I have fake ones also, that I bought at k-mart a couple of years ago for 10.00 and i bought 2, love them....but yours are awesome...love the color,...
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Glad you got one for each foot ("I bought two"), it sucks to have one foot cold and one foot warm. LOL
I LOVE my Rocket Dogs!0 -
My furry Xeloda shoes that I posted pic of a couple pages back are Rocket Dogs! I love them!
Well, I am sorry to read of se's and high tumor markers and neuropathy and big d and peeling feet and hands and....
Will have 5 more rounds of X after radiation is finished on 12/19. Can't say I am looking forward to it..
Wishing all good rest and sweet dreams
Sue
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Sue, that is why I bought them! (because of your pic)
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my shoes are made by OLD FRIEND a competitor of UGGS. and verylightly used so the price was right.
I am feeling great finally but today is Day One.. yuk. off to take some of those pretty pink tablets as soon as I am finished with my cheerios.
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Hi - I have gone through 2 cycles of Xeloda and my side effects are real bad, alot of dirreahea, tiredness, no appetite, I see my Dr tomorrow and I am not going to go back on it, I can't work because I can't stay awake longer than 2 hours..
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Oooo bella, I feel ya. Have you considered all the ways to fight diarrhea and fatigue? Just making sure you know about immodium and ritalin. However, I still would not make it through an 8 hour day. <<<<disability queen here. Enjoying the time I have.
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i have now joined the ranks of Xeloda! Started it on Tuesday - so far so good, have been applying bag balm to feet and hands religiously to prevent H&F syndrome. Is there anything else i should be doing? how long does it take for the side effects to kick in and most importantly- in your honest opinion do you ladies think this is better than infusion chemo? thanks so much!
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Deep, at first i didn't like it and was scared to treat from home. I still feel funny not getting checked by nurses like they did with infusion.
BUT now I love it! And I do believe it may work better because it is a steadier dose to your body than every the others with 1=3 weeks getting hit really hard.
I think I will need to come off in January but it has been a real vacation for me to use the X.
Fortunately, I did not get the HFS extremely horrible for me with Doxil. I have fatigue and diarrhea which i control very easily with immodium, lortab, tea, bananas, lots of great stoppers check it for me.
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Lynn - I am glad you got to talk to the PET scan people and found you did not have to eat differently the day before. I will be awaiting good news from your scan.
I have had some of the Hand Foot Syndrome but I have found that if I wear shoes and socks it is worse so I go barefoot around the house and just wear sandals when I go out somewhere, the only problem with that is the temps are getting in the teens and 20s and soon lower than that, so I am going to have to start wearing shoes and socks when I go out. Has anyone else noticed it is worse when you wear socks or shoes or both? The first time I noticed anything I used the bag balm and everything but I could not sleep with the socks on so took them off and my feet actually felt better the next day without anything on them.
The only other side effects that seems to bother me is nausea the whole week I am on X and about 5 days on my off week. I take Zofran regularly and it helps some, plus I am gaining weight but not eating that much, what is the deal with that? Of course the fatigue is there one day and maybe not the next. I have started to keep a journal to see if I can figure out what days are going to be good to go do my Christmas shopping or other outings I want to do, but reading some of the other posts it seems like there is no regularity to it. I do consider myself one of the lucky ones though because the SE I do have I can live with, so no complaints, just wondering if there are others out there experiencing the same things.
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Hi jeanieb2
We all react differently to treatments! I find my hand and foot syndrome much worse if I don't wear shoes. I use the soft topped diabetic socks as they have a padded sole, absolute bliss! At least I can walk without the OUCH in every step. Like you the seasons will affect me, we're heading into a hot summer and I'm searching for padded sandals etc. I'm on the 14 days on, 7 days off treatment at 3,500 mg per day and I'm just starting cycle 6.
I'm also gaining weight because I've now got my taste and appetite back after FEC and Taxotere.
With love from Australia
Joy K
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Deep - it is a bit of a tough regime but being able to keep your hair is priceless. My hand foot syndrome is getting kind of bothersome.. like ouch ouch ouch. They are not falling off yet so I'll keep plodding on. I am on cycle 13 and have done very well SE so far so don't be scared.
Do moisterize and drink plenty of liquids.. and don't be scared. It's a good drug for many many people.
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Today I felt like crap. I'm sure its partly from coming back to reality after a great TG week. But I decided that robbing myself of carbs (for trying to lose the pretzel- tastycake- bloating) wasn't helping. So pizza to the rescue.
Asked for a pulmonary function test to see if the difficulty breathing and harsh coughing would show up. The lungs were at 144% of predicted capacity. So it must be bronchitis with slow healing. Gosh its exhausting being my own diagnostician. Maybe I should let the doctors do all the work. .:*)
Someone tell me that they look for trouble too. Waiting for the shoe to drop. Or not wanting anything to sneak up and catch us unaware? Scared?0 -
K-Lo hon, don't know what else to say to you except sorry that you are feeling low. A secondary problem, like bronchitis, can surely sneak some depression or anxiety into the formula. Hope it works out OK. And BTW, good for you for being your own diagnostician - sometimes "they" are on it, and sometimes not, as you know - vigilence pays off! Be better soon - SUE
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Re-joining the ranks of the Xelodaers! i was on Xeloda and Tykerb for a year and loved it. Other than the hand/foot stuff I felt great. I went off it almost a year ago until just recently. I just finished my first 2 week cycle, and I feel like crap. I don't think it is the Xeloda though.....pretty sure it is the cancer. I am so tired, all the time, no matter how much sleep I get. I never feel good anymore. I have days that are better than others certainly, and I don't lay in bed all day long, but I just don't have any energy. I keep thinking my energy will come back, but I guess I have to realize that I have been in constant treatment for the last 28 months so maybe my body is just too tired to bounce back. Of course the pleural effusions on both lungs making me short of breath are not helping my fatigue. I am 35 and feel 90. I sailed through the first 20 months or so of this stage IV cancer stuff. Not sure what I expected would eventually happen!
Hate to be a downer, so who has the magic cure for fatigue and crapiness?!! hahaha. I am happy to still be alive so I need to shut it with the complaints!
Take care, ladies!!
Lori
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Okay Ladies here some good news that X DOES work! I had a cat and bone scan couple days ago. Both showed stable disease!! Good old Xeloda is holding the line and enabling my dance with the Stanle Boy!!
Judie0 -
Im sorry you dont feel good, Lori. Maybe being back on X will help?
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I haven't posted lately but have just started Xeloda, 14 on, 7 off, 3000 mg daily. I have finished my first 14 days and I'm currently on my 7 days off. The only SE I've had is nausea which lasts from the time I take my morning pills to bedtime. I have some Zofran but I'm not sure when I should take it. For those on Zofran, do you take it before the Xeloda? I took two Zofran during the first 14 days but took them after I started feeling nauseated. I saw my onc yesterday and he gave me Compazine to try. He said if I want to try Zofran again to take it 30 minutes before Xeloda. I have to find some relief from this constant "queasy" stomach. I start my 2nd cycle next week. This is the first chemo I've had since 1986 when I was first diagnosed with breast cancer. I was diagnosed with mets in 1998 but have only had hormone therapy until now. Any suggestions for nausea?
Debbie
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Debbie.
I have only done one cycle of Xeloda and am currently on a Xeloda hiatus while I get rads. BUT, I had horrible nausea as well. I took Zofran every 8 hours whether I was nauseated or not--and then took compazine for breakthrough nausea. Hope things improve for you!!
Sue
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dzj2003 - When I take Zofran I take it every six hours round the clock so it is always in my system. My onco told me to start taking it a day ahead of when I am going to start my 7 days on. I have found it helps me quite a bit to take it every 6 hours and if I miss a dose I can tell it and it takes a day or more for me to start feeling better so I am very religious about taking it at 6 hour intervals. I also take it for about 4 days after I finish the X because I am nauseated that long and it does help then also.
K-Lo - I am sorry you are not feeling so good but I am glad you did take matters into your own hands and have the tests done because we never know unless we have them done. Sometimes we think it is nothing and just wait but then wish we had done something about it. I also think everytime I have a little ache or pain that the shoe is going to drop, and then wonder why I go looking for trouble, it can find me without me always looking for it
. I am scared sometimes but that is usually at night when I go to bed and can not sleep when my mind starts wondering, if I could only switch it off like a radio I would be much better off. Take care and get better soon.JoyK - I am on 3500 mg a day also but I do the 7 days on and 7 off and will start my 7th cycle Sunday. I went to a craft show with a friend today and had to wear socks and shoes and my feet hurt now. I have some of the really soft socks with shea in them but even that does not see to help as much as just going barefoot. I just wear Birkenstock sandals with out any padding and they do not seem to bother me. They are much better than socks and shoes, guess we are all different, that is what makes the world go round. So you are headed into the hot weather and we are going to have 5 to 7 inches of snow tomorrow so no sandals outside for me for a while
.Hope everyone has a great weekend.
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Go, Judie, Go! Great great news about the scans, and "keep on taking the tablets" - I'm gonna. Love'n my X! Best to you - SUE
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Great news, Judie!!
Lori
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