All about Xeloda
Comments
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Hi Ronnie. Welcome to the Xeloda club. Sounds like you've had a good run so far so be encouraged.
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As for keeping track of your schedule, the best advice from this thread is to take your Xeloda 12-hours apart. Kind of a no brainer there. I'm up for work pretty early in the morning so I take my anti-nausea about 4:30-5:00 a.m., eat breakfast followed by the Xeloda a 1/2 hour later. 12-hours later, I repeat the process. Some good advice as well is to take your anti-nausea 1/2 hour before the Xeloda with food. DON'T take the Xeloda on an empty stomach. Eat something and then do the Xeloda within a 1/2 hour of the anti-nausea.
I also take a lot of supplements. I wait about 2-hours after the Xeloda to take anything. I eat a little something like a bagel and then take my pills. I don't know about the other drugs you're taking. I would think that whatever schedule you've been on with those, just take them a little bit later after the Xeloda. You may want to ask your doctor about drug interactions and how long to wait before taking them after the Xeloda.
I also like the 7/7 schedule. I too started on a Saturday morning, ending the following Friday. It's kind of nice because I always have the weekend to look forward to when I'm off of it.
Wishing you good results with the Xeloda!
Sue
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RonnieH - I have a desk calendar that I keep with the start date and the end date. I write down what time I take the X so that I remember to take it. I take Nexium on a daily basis and thyroid medication so I take them when I get up, usually 7 or after, I also take Zofran on a regular basis when I am taking the Xeloda, which my doctor said to take every 6 hours so I keep that marked on the calendar also so that I remember what time to take it. By taking it on a regular basis I usually do not have much of a problem with nausea. I know most people on here say to take the Xeloda 12 hours apart. I take mine at 8 or 8:30, either during my breakfast or after and then at supper, usually at 6 or a little after, the 12 hours does not seem to work out for me and I have never been told it has to be 12 hours, but I try to keep it at least 10 hours or more. I have also kept a journal of how I felt everyday while on Xeloda and then when I have my week off. I found it helpful, but I do not keep it anymore as I have been on it for 2 years and kind of know what to expect. I do have to say the desk calendar has helped me a lot in that I mark down the weeks off and on, that way if we are invited to something or plan on going somewhere I can look ahead several months to see if it would be a good time for me or if I would have to decline. Hope this is helpful.
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Did you get a starter kit with your X? If not, visit this website and I believe you can order one for free @ www.xeloda.com. I got one from my onc office. It has a planner and lots of helpful info along with a 2 week pill box. I use my pill box faithfully as I take other meds along with the x. I'm also on 7/7. I fill up my 2 weeks (sat thru sun with a b ox for each day). I take the one week, go 7 days without, then take the next 7 days. I also try to take them 10 to 12 hours apart.
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Hi RonnieH. I too have to take other meds. My schedule is . 8am Ibandronic acid for bone mets. 8.30 Antacid tablet. 9am breakfast. 9.30 am Xeloda. I take Rivaxoban for blood thinning late afternoon and have my evening meal at 7pm. 2nd lot of Xeloda at 7.30. I am 2500mg twice daily and on 8th day of second cycle. No side effects as yet. My bloods are spot on and my immune system is really good. I eat plenty of fresh fruit and veg and my onc says she thinks that because i take Xeloda right after my meal it has kept sickness at bay. I use Aloe vera and vitamin E lotion not cream as I think this is absorbed quicker and leaves hands and feet cool. Trick is not to rub in too hard and if possible keep feet and hands cool. Cheers. I hope this helps.
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Well ladies, the Xeloda has failed me, progression in the liver
. I've only been on it for 4 months and onc doesn't want to give it more time, so on to something else, maybe. Get a port later this week and from what I understand, the insur. company dictates what they will approve next. This would be my first IV chemo and I'm not sure I want to go there ... thinking about it. 0 -
SyrMom, so so sorry to hear this news. It really rocks you back on your butt when you get progression. Once you've digested this news and reconciled it, you'll have the strength to do what comes next. Sending you a gentle hug
Linda
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Thanks, Linda, appreciate it.
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SyrMom- I am sorry that your world has been rocked once again. Hugs to you. I know that there are many more drugs out there that can work so I am wishing you the best possible on your new journey. Keep us posted. For now, konw you are in my thoughts and I am praying for you.
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Thanks, Leftfootforward.
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Saskie & SophieJean, milk is a deinite NO while on Xeloda, first instruction from my MO. Can consume other dairy products, especially saltfree cheese & plain yoghurt but without other protein (meat, eggs, etc) in the same meal as it prevents iron consumption in the liver. Xeloda's main process is in the liver explained MO.
SyrMom, good luck with the next chemo.
hugs, Ebru
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Stagefree thanks so much for that if did not know that one just had my first major se from x an infected thumb do to a ingrown thumb nail hand Dr said it was from the x better now yeah see onc on thurs for some reason i'm nervous don't know why i'm usually not. sending everyone light and blessings on this path
chris
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Chris, hope it's not a major problem & over soon.
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Thanks Ebru!
It's interesting that our oncologists here don't talk bout compatible and incompatible foods. Always good though to find out its not my imagination though!
I've just taken a two week break from X ( took a holiday and wanted to travel without SE worries) Sure resenting I have to start up again even though I know it's "good" ...well actually necessary for me.
Blah.....had a wonderful holiday and remembered briefly what my life before had been like... I'm actually a bit more angry than I usually am....blah, blah😛
Done whining now though.....
Time to be grateful again...
Best,
Sophie0 -
Sophie, this news is especially to motivate you. Yesterday I got TM results back. Not only TM's down to 44,50 from 57 ina month, daily dosage is decreased to 2000mg/ day 14/7, now hopeful for less SE. Hang in there lady!!! ☺ btw, how awesome is that to have a small break from the cancerland...happy for you.
Hugs,
Ebru0 -
Just got home from 3 nights in the hospital with Xeloda/BKM120 rash. I think it's the sun sensitivity that really set it off but I've had an awful rash down my arms and around my torso-it follows the lines of my bra and pants so its like the rash flares up wherever the sun shines through my clothes. Anyway, feel like a beached whale pumped with saline and steroids for 3 days. Just thought I'd share my experience. Don't know now if I'll be taken off the trial and what my next step will be but the Xeloda, while seeming to work on my brain mets, caused me feet and skin problems that were too severe. Anyway, on we go to the next thing right?
Curious to know if anyone else has had similar rash or sun sensitivity?
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Yes, I was exposed to sun for half an hour a couple of weeks ago. The next day my face, scalp & neck especially and my arms were covered in rash. Normally I avoid the sun as much as I can. The facial rash is there anyway as a SE, but the sun just blew it up!
Was glad it recovered without any more medication than my previously prescribed Bepanthol in a couple of days.
Since the instructions strictly underline no sun with Xeloda, I am doing fine as long as I obey this.
Hugs,
Ebru0 -
Has anyone experienced what I would call a rebound headache on Xeloda? I have been so lucky, with very minimal SE's for these first 2 cycles, but both times, a day or 2 into my "break" week, I spend about 36 hours just crushed by a headache/verging on migraine. I know the drug info says headache is possible, but I'm finding it odd that it's not a problem until I'm not taking the pills anymore. Anyone else?
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Thanks Ebru-I'm finding that there are a lot more quirks you have to pay attention to with Xeloda-wish my Dr would have pointed those things out but I guess everyone responds differently. I wear SPF shirts/sunscreen and can still get burned. I'm wondering if I can adjust dose and be ok or not. You seem to have it dialed in!
Thanks, Gail
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Thanks Ebru - my onc said she hadn't heard about anyone having problems with milk. I have resigned that I just do the milk products on my week off and I guess that is one of the new norms for me. Will finish this round of pills today and yeah onc agreed to two weeks off so i can join a bunch of survivors in Vegas for a few days and not worry about all the SE's.
My latest one is how bad my lips crack by the second week of Xeloda. Have had allergic reactions to chap stick so have to be very careful what I use on them. Always something. Hugs girls
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Hi. I have had same problem with sun. My rash was made up of tiny blisters that have now crusted over. Im on day 12 if 2nd cycle (14/7) and have just started with hfs problems. Do the hfs symptoms get a bit better on week off? Hope so. Going away for few days. Thanks Ebru for info on milk.
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How about Bepanthol cream on lips ladies, and wait! The info came from a professional make-up artist friend. One day on a visit to cover up my facial rashes ( the event was very chic), I saw a tube on his makeup table and asked. He said he used it as base for lip make-up!!!! Now my already prescribed Bepanthol goes right on the lips & it works wonders in just a few minutes. And my lips shine so beautifully I don't always wear lipstick on !!! 😊 Always welcome, for the tips. MO has been very strict on the milk issue, so I am confident with that one indeed.
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Kebab on the week off we do have the chemo in our bodies. In fact, since MO asks for bloodwork by the end of the week off, I grasp it is when X has actually finished working on that cycle. So maybe not be so suprised about it after all??
Ebru0 -
I just started my 8th or 9th round, not sure which and am feeling so wore out. Like I don't have much fight left in me. Is this just the xeloda cummulative effect. Did this happen to anyone else and did you cut back on the x or take a break from it and did that help? I'm having PET scans next wed. I just don't feel good overall, so many aches and pains, and exhausted. I won't be surpised to see progression but you know how it is worrying when you don't feel well. I'm going to a fair tonight with my DD and her hubby. Just got dressed at 6 pm. Hopefully this will make me feel better.
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RangerMom, my 14/7 tx is:
1-6 cycles : 3000 mg/day
7-9 cycles : 2500 mg / day
10. cycle: 2000 mg/ day
The cumulative effect is a challange, just on my second day today & I feel fatigue, sleepy, achy, etc. So lower dosage hasn't helped me with less SEs. But still happy it's working so far. My DS & DH are the reason I keep going. And not having the classic chemo look makes me motivated. All chemos have SEs so better of the worst so far for me.
Lowering the dosage was due to my TMs dropping quickly, rather than me suffering badly from SEs. Of course I do suffer from SEs, but comparing other chemos I have been following online, my SWOT analysis led me to accept & hush about them on MO appointments.
I even take painkillers before some appointments, so that I don't lie during examination when she asks "do you feel pain here?" He he..
Hugs, Ebru0 -
Thanks Ebru you are a Dear, I will wait this out because I know it will pass. I know I'm just at a low spot right now and I WILL feel better. I have my first grandbaby to hold coming around the first of November. I think once the scans are done and I get the results the next day my anxiety level will go down just in knowing what's going on. I could be pleasantly surprised and I have good news, wouldn't that be great.
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November babies are cool, I am a scorpio / lion myself, born in November! 😎Best of luck with scans. Oh how wonderful the baby smell is, best therapy for sure 😃.
Hugs
Ebru0 -
RangerMom, I think you're experiencing the cumuluative effect. I just started round four (7/7) and was feeling really dragged out yesterday. I have days like that on and off but nothing that a good nap won't cure. Still messing with the hip pain that now the Aleve isn't working. Hoping it's the chemo doing it's thing. No other side-effects so far - keeping my fingers crossed! Sue
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thanks Sue and Ebru. I went for a walk today and the fresh air and last night being out with my daughter helped bring my spirits up. I think I've got scanxeity right now too on top of the cumulative effect. My doc said I could take a break from the X but I'm afraid to till I find out what the scans say. If there's progression, i will come off the X anyway to go onto something else.
I hope you don't get side effects too, would be awesome if you could sail through it without too much problem.
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Hi Mutherflush-I'm just curious if you're fair complected like me? I'm a redhead and I wonder if that has anything to do with how hypersensitive I am. Ebru and others-I'm so thankful for all the tips on here-makes me think I should keep on trying with X as long as I follow all them.
Hugs to you all, Gail
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Rangermom, we are almost at the same point in tx with X. I too am experiencing more fatique, and to top it off, I pulled my back last night for the first time. Don't know if its spinal (disk) or muscular but i'm in alot of pain from that.
I'm to the point that by the end of work, i'm exhausted and can not cook , clean , or help the kids with homework.(physics takes a lot of brain power). I see my MO again on wednesday, and hopefully she can let me know if the spot in my neck is indeed progression.
I wonder how many of you are still working full time. I'm on my feet all day and use my hands constantly with letters, postage and money. counting money is the worse, painful and slow. by the time i come home, i'm exhausted. I'm thinking of going out on disability retirement as I have 28 yrs in the postal service. I have mixed emotions, i never was a quitter, and this somehow feels like quitting. My DH says I shouldn't feel that way, that if its a matter of work or family life, family should come first, besides the fact that we both know of many people milkimg the system of disability when they are fully capable of working. I'm only 50, and I really don't know how many yrs I have left. I'm somewhat of an abnormality with the way my bc has progressed so rapidly, and even the dr's don't know if meds will work or not. 1, 2, 10. or 15 yrs??? no one can predict. I would hate to have spent my final yrs only working, but i don't want to have these be my final yrs. I still feel like I have many yrs left.
Sorry if this seems down. It's really not, i'm just trying to figure out what the best is for me and my family. I'm somewhat pragmatic (and controlling) so this decision is huge for me. I've looked forward to retirement for so long (5 1/2 yrs to go) that it would be a shame if I never got to experience it.
I hope all of you on X are coping well with the se's. this round, fingers seem to be the worst.
One last question... so far i have mets only to chest wall, so they're calling it local/regional recurrence. When further mets are confirmed, how did you first realize it? Any pains, odd ocurrences, or subtle hints that it was progressing before scans confirmed it. With every ache and pain, my mind goes to that dark place (although it's probably just old age creeping in).
Thanks for your imput.
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