All about Xeloda
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Hi all,
I am joining everyone in taking Xeloda. Today was the first day I am taking Xeloda. I'm taking three 500 mg. twice a day, (every 12 hours) I will be two weeks on, one week off, then have lab work, then see my oncol. for results. 21 day cycle. He also mentioned I will take cat scans every 9 weeks. I will see my oncol. every three weeks rather than once a month. Any tips, suggestions would be great.
Thanks!
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My biggest suggestion is, do not skimp on breakfast. Eat enough that your stomach can tolerate the drug. You can reduce the amount you eat in the morning after you know how you will respond, but as one of our members said "Do not send a banana to do an omelette's job." She wasn't kidding!
Good luck on this drug.
*susan*
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Hi NG, hoping Madame X does well by you. But scans every 9 weeks? Seems like a lot to me.
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Hi Susan,
Thanks for your comments regarding breakfast food. I'm really not one to eat anywhere near a large breakfast as I usually only drink Ensure for breakfast. Yesterday and today though, I did the toast thing, today I added Activia and dropped one of the sliced toast. What's getting me is having to wake up no later than 7 a.m. and immediately eat, then wait 10 minutes and take my meds. I'm one of those clockwork people for dinner as I like to eat by 6:00 p.m. So that would put me at about 6:15 pm. to finish dinner, wait a few minues, then take my evening meds. I talked to my speciality pharmacist about this and she said as long as I take the evening pills within the hour, it would be okay. So if I take my morning meds around 7 ish, it would be okay to take the evening meds. with the 6 pm. timeframe. What do others do?
On my second day which is today, I seem to be doing okay. I don't want to jinx myself though, LOL. How have you been?
Hi goldie, thanks, yeap, that is what he said, every nine weeks. He said he wants to be aggressive with this. I have spots in my liver, spine, a few on left ribs, and the usual in my lungs and sternum.
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Hi NG
Welcome and hoping X works it's magic for you
I would suggest taking a probiotic to help avoid stomach issues and lots of lubrication if your hands and feet. Plus buy some sketchers. They're really comfortable!
Babs
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NG, just because the doctor wants you to have scans every 9 weeks, doesn't mean you have to. Not sure what kind of proof there is to the fact that these scans can actually cause cancer. I think I would wait just a bit. Maybe do labs after the first cycle and see what they show. I know they are not always reliable, but at least much easier than a scan. Some girls don't even show any results until being on X for a few cycles. As for eating, my onc told me that every 12 hours isn't critical. I'm not a morning eater and decided to try just a banana or just a yogurt. I didn't have any trouble. So breakfast around 6 am, and dinner was usually between 3-4.
I have been off X for about 6 weeks now. Just doing Xgeva and my RSO. Getting labs today, see onc on Thursday. He may not be too happy with me, for quitting X, but hey....this is my body and my life!
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Hi babs,
Do the hand/foot problems I'm heard about start at the onset? What's the general consensus here on that? Looks like l'm in for some kind of ride with Xeloda. I incorporated Activita this morning.
Goldie, I know. Maybe we can wait and see on that after the first set of scans and lab work that he will have taken every three weeks. My cancer antigen levels really tell the tale on cancer though. They have been going up and up. So maybe if the cancer antigen levels go down, oncol. may adjust his cat scan time frames.. Guess it's all a wait and see kind of thing.
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Wait and see....that is our life as we now know it. H/F is accumulative, and some get it worse than others, some have it worse on their feet, some have it worse on the hands.
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Hi Naturegirl, I take my X roughly at 10am and 8pm. I don't eat until I am at work and have handled the typical morning urgent items at work. I adjust down or up based on when I eat breakfast and dinner. Sometimes I forget to take the morning dose and take it at 1pm or later. I haven't noticed a difference. As long as you are taking the full dose of the medicine and trying to space it apart within reason, you will be fine. No need to adjust when you eat your meals. The food thing is because the X needs food to work optimally. Although some have stomach discomfort, I have never had any. I would be fine taking it in an empty stomach but take it with food so it has the best chance of doing its job.
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NG. The hfs is cumulative. For me the hands are worse than the feet. But that's because I have really great ointments ( RX) that the derm at MSKCC prescribed. It's harder on my hands since they're always in use
Babs
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Cycle 12 begins tomorrow. I have healed a bit this week, and my GI issues have lessened. Time to start eating breakfast and downing some pills! I generally take my pills at about 8am, and the evening ones around 7:30pm, now that the sun is setting earlier. For a while, we were eating dinner at European times since there was so much light. Sadly, Fall is upon us already.
*susan*
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JFL, hi my friend! Good to see you. You are always so very helpful and I thank you for that!
babs, how long did it take before you started with H/FS? Anyone else?
Does everybody get H/F thing or are there some lucky ones who do not? Sounds serious and painful.
I had to go back to my oncol. yesterday so he could check a strange occurrence, raised rash to the left of my sternum. It's been coming and going and now it coming more than going. He said he thought it was inflamed and possibly infected, (possibly cellulitis) so now, to add insult to injury, I am now on a round of antibiotics. Like I need to be adding another med at this time when just starting X on Monday. Arrrrggghhh. This morning my body skin feels rough everywhere. Anyone experience this? It actually hurt to sit.? I rubbed my body down with Eucerin skin calming moisturizing cream.
Susan, good luck. Wow, 12 cycles. Bet you could tell me some stories. Obviously X is working for you. Did you get the H/F/S?
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My wife got the hand foot syndrome very quickly. Pretty much her first cycle her skin started cracking and peeling, and produced a feeling she says was like she was walking on hot sand. I'm going out on a limb here, but I think there are at least two prongs to this hand foot syndrome. There is the damage to the skin, and then there is the neuropathy or whatever is causing the pain and burning. My wife was off xeloda for quite a while, her skin looks near perfect, but she is still getting the burning and pain. Now its giving her trouble sleeping again.
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I honestly don't remember when the hfs came on. Sorry!!!!!
Babs
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Naturegirl, I've been taking Xeloda for 3 years. My initial dose was WAY too high and I developed serious Hand/Foot syndrome in 10 days. I couldn't even complete my 14 days On!
My dose was lowered and the same thing happened only I was able to take Xeloda for 11 days before the foot pain became too bad.
After my third dose reduction I was finally able to withstand the skin damage. It's not just peeling skin and dryness. It's hot pain like fire, open bleeding cracks in the skin, the inability to walk, the inability to write with a pen or button my jeans or open a jar.
I finally complained enough about HFS so that my dosing schedule was changed from 14/7 to 7/7 and that has helped the very most. My skin still cracks and bleeds, my hands and feet seem to be permanently red but I'm in much less pain. I can do this dosing schedule. Finally!
Xeloda is working for me which makes it easier to withstand dealing with the side effects.
Kessala
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kessala. You have been stage IV since 2005? Wow. How inspiring. That rocks !!!
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I also don't worry about the time I take my Xeloda pills. I take the morning pills whenever I eat breakfast which can be as early as 7am or as late as noon and I take my evening pills whenever I eat dinner which can be anywhere from 6pm to 9pm. Sometimes, if I eat out and forget to bring my pills, I eat a piece of toast and take my pills when I get home which can be quite late. I think it's important to take them with food but the exact time is not so important. If I forget a dosage, I just skip it and add the dosage to the end of my cycle. If my HFS gets bad, I take another week off. I've been on Xeloda for almost 2 years. 3,000 mgs/day, 7/7 cycle. I can't imagine a more convenient treatment. Love the freedom of taking pills!
Hugs, Susan
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Hi!
I also don't worry about the time I take the X-I always eat before taking the medication. I think that's the more important part of the equation.
Babs
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I'm another one who takes the pills whenever I get my breakfast and dinner rather than watching the clock and planning meals around it. So far it's working like a charm. I've been on it since December and my tumor markers have been falling pretty steadily and are just barely above normal now.
I guess I'm a little weird with the HFS, it was much worse in the first month or so than it is now for me. My hands are cracked at the joints and my feet are rough and flakey, but it doesn't hurt anymore. My feet did hurt a lot on my "on" week when I was on vacation, but I was walking 20-30,000 steps a day, so that might have been pushing it! But I walk every day and average 10,000 or more steps a day when I'm not on vacation, so not sure where the crossover line is between ok and too much. I use 20% urea cream daily and I noticed a big difference when I started that, although others here say it did nothing for them, so who knows?
I've also thus far avoided intestinal problems and was only nauseous the first week before I started taking daily Prilosec, but now that's fine, too.
I wish I could see more rhyme and reason to the side effects so we could say with confidence, "do this... don't do that..." For me, like some of us, it's been a fairly easy drug to be on. But for others, I know it's been a lot harder.
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i ad a regular scheduled appt with my mo today. Found out I've been taking X wrong since I started back July 1st. Ive been taking 1 tab twice daily for 7 days on and 7 off. Mo said it should have been 3 tabs twice a day. Wth ?? I looked back in my notes and truly he told me 3 twice daily. When I got home I noticed the Rx bottle also said 3. Oops I messed up. No idea how that happened. ! maybe that's why I haven't had any hf issues. I do have mouth sores. The crazy part is I have felt it is working. My hip pain is completely gone and my near constant, debilitating back pain is not completely gone but so very much better. My Tm's continue to drop. So mo said next week when I am back on to increase to 2 tabs twice daily for 1 week then increase to 3. If I have any new se we can discuss going back to 1 or 2 twice daily. Mo said if the smaller doseis working that's OK with him. So I am both excited and nervous. If the small dose is working so well, maybe the increase is going to be even better or maybe the se will make it worse. We will see. I only know for the first time in 3 years I don't have constant pain that keeps me from doing anything. I finally not only want to live but am excited about what the future might hold for my family.
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Patty, that's wonderful that you're feeling better on only 1/3 the dose! Hope the larger dose still feels good, but nice to know you also have options and you can already see improvement on them!
We have so much going on with cancer, I can totally see how you missed it (my last appointment I waited an hour in the waiting room for them to call me back for my Xgeva or Lupron until I finally remembered that no one was calling because every 3rd month I don't have either and it was that month--I sure felt like a moron, but it's stressful and things like that happen!).
Hope Madam X continues to rock thing for you for a long time!
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roses. Lol. Glad to see Ian not the only forgetful person.
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Patty, I am happy to hear X is working and improving your quality of life so much! And at such a low dose to boot!
I can totally understand the dose mixup. When I received my pills, I was so confused. My MO told me one thing, wrote something different in email and neither matched up with the prescription label (which was wrong). It took various calls and emails to sort it out. With multiple pills, taken at mutiple times a day, it can get whacky. Some describe dosing by total daily dose, others by each individual dose, and others by a combo of number of pills/dose per pill.
One warning if you increase your dose, I have had (tolerable) bone and liver flare/healing pain since starting the drug nearly 6 months ago, and so far X has worked very well for me. I assume X is chewing up the BC in my liver in the same painful way it is chewing up my hands and feet. And healing bones are known to hurt. If you start to feel a bit more bone pain, it may be that the drug is doing its job in overdrive (and not progression).
Roses, I must confess I have done the same thing, falsely waiting for an XGeva shot, which I now receive every other appointment. It happens!
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Glad I'm not the only one, I guess that's just life!
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Hi all, thanks so much for everyone's response. I think I will calm down about the timeframe in taking Xeloda due to what I have read from y'all. Thanks for being honest with regard to the hand foot thing too. I now know what to expect. It's good to read Xeloda is working for many of you, some being on X for one, two and even three years. That is quite encouraging. It's dealing with the SE's that may become a problem. I'm thinking positive and hoping for the best! Have a great weekend everyone!
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I work quite hard to keep my dosages 12 hours apart. It works for me since I am up so early in the morning these days. I prefer to take any drug according to the published protocol whenever possible.
*susan*
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Susan, where did you see the protocol that specifies 12 hours? It's not specified on my patient insert and the "Patient Instructions" on the Genentech website are pretty loosely worded ("Take XELODA 2 times a day, 1 time in the morning and 1 time in the evening."), so now you've got me curious! I'd be interested in reading a more detailed protocol if it's available.
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Roses, To be honest, I will never find a copy of the original Trials, but someone once posted it on here. My trial nurse at Dana Farber also emphasized that the 12 hr divide was the best method for taking this drug. Something about time release, level amounts of the drug in the system, and to be honest, I forget the rest. I figure if I am putting my body through all of this, I want to give it the best shot I can at helping it be effective. Sorry to be so imprecise. I just never can find studies or even their abstracts!
*susan*
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I also manage my mealtimes so that my doses are as close to 12 hours apart as possible. Same reasons as Susan. If dinner comes around too early for my dose, I have a piece of toast with butter with my pills later in the evening.
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Thank you, Susan! And, Lulubee, good idea about the snack vs. dinner! With husband, daughters, work, school, activities, etc., dinner and breakfast 12 hours apart sounds challenging, but also sounds like I should probably put in the effort. Pills with snacks would definitely make it more doable.
ETA: I looked for the study, found what I think is the trial referenced http://annonc.oxfordjournals.org/content/14/8/1227.full and the 7/7 dosing trial http://jco.ascopubs.org/content/26/11/1797.full which are interesting although I still can't fine the one that specifies 12 hours, although the reasoning makes sense. To add to the confusion, several NCI sites (Ohio State, Mayo Clinic) state on their Xeloda patient pages to take it 10-12 hours apart, so sounds like it's not all that cut and dried and I may not have been screwing up so far after all. But still, now that this has come up, I'm going to pay more attention to the timing, can't hurt, right?
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