All about Xeloda
Comments
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It's amazing what you can do when you are not in pain. You might be having a paradoxical reaction to the Tramadol, but it sounds like you are simply enjoying being pain free. I have the same reaction when I take pain meds during the day - look at all I can do! Vacuuming is fun! Bring that laundry over here!
Pain is sneaky, and robs you of initiative.
That being said, dang girl - you did all that on a X week? Awesome.
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I am no longer on xeloda it failed me after 3 months. My petscan lit up like a Xmas tree and they found a few tiny spots on liver. It really sucks. I am beings with in believe to nabaline I hope I spelled it right. Good luck with xeloda to everyone
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Stella, best of luck with your new treatment.
Leah
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Lynn, I am ahead of you and half way through my third cycle,( 2wk on 1wk off) The first round was the hardest, had lots of peeling and pain. I asked my oncologist to lower the course, but she insisted I continue and I am glad I did. I think it gets easier with time. Right now I only have some pealing skin and no pain, but i do use a lot of cream throughout the day. Also I bought a new pair of shoes, one size big, and inserted these gell packed insoles. I am walking without any pain at all. One thing I think really helps as I mentioned earlier in this thread - Every morning before showering I rub olive oil gently into the feet and hands. Good luck. It is possible that you will not be affected too badly.
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Leah_S, Wow that scares me about the oophorectomy because I'm scheduled to have one on the 20th. Did you have any complications during the surgery?
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The oophorectomy itself was not a problem. It was done laparoscopically so I had no pain - I didn't even have the problem of the gas that many people have (it can cause pain for a day in the shoulder/upper chest area). I was tired and low energy for about 2 weeks. The problem seems to be that I produced weird scar tissue/adhesions. There's no way to predict that.
Best of luck with your surgery. If it's done laparoscopically you might feel fine after a day or so. I felt well enough to go to a wedding the Tuesday after my Thursday surgery. Don't. Do. That. It knocked me flat on my tush. The instructions I received from the hospital when I left were not to return to work for 2 weeks. If you're working, take that advice since it will probably be that long until you feel more-or-less OK.
Leah
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Tigre, I appreciated your report immensely. It gives me some impetus to keep increasing the dose. I know you had a rocky start, so if you can adapt to this, maybe I can, too. : )
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MameMe, This is a doable chemo I have decided. My oncologist says to me I don't have to suffer.. there is always something available for the SEs.. speaking of which it was amusing that she prescribed methotrimeprazine for nausea. After googling it I found out that it is mainly an anti psychotic drug..which explained why I was sleeping so much. needless to say I stopped taking that, and have gone back to domperidone. I have learnt that it helps me to involved in what medication I am taking for the SE.
good luck. You know you can do this.
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I talked MO into decreasing dose to 3000 a day instead of 4000 and also going 7 on 7 off. It has been much better so far. My third tumor marker test still showed an increase though. Figures. Have scans next week to know for sure.
Is anyone else having issues with acne?
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hi everyone!
Tomorrow I start 30th cycle tomorrow!! To all newcomers, please read all pages of this thread, full of all the information you need. Dear Lynn1, who started this thread, passed away (RIP) such a short time after starting this thread.. It looks a lot, but not. As a newbie, I read all threads on the Stage4 forum, knowing I'd need the info sometime anyway.
And that gave me the opportunity to meet many gorgeous women who had already passed away before my arrival here.
That being said, fatigue is worse geometrically with each cycle, but hey I am alive still. That IS a small price to pay. Other SEs are somehow managable. Just remind yourselves you HAVE cancer and NEED these pills. On some days, I feel normal and say do I need these which make me feel horrible. Soon enough, I am reminded by my bone aches! Yep I do.
This is not La-La land for sure, but being alive with our loved ones with managable QOL is worth the therapy, for me at least..
NO DAIRY with OTHER PROTEINS while on X. MILK IS FORBIDDEN TOTALLY.
I remember posting some detailed diet suggestions from my cancer dietician somewhere on the boards.. Please please have a look. Costly info that was indeed
Btw, sex is still Gooood. Interesting, the first two years I was so off, guess it's state of mind. Now enjoying my life more
Hugs
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Ebru, what is the reason that milk is forbidden? I drink it sometimes and so far no problems.
30 cycles! I hope I get to that and beyond. This is a fairly easy tx, and it's PORTABLE!
Leah
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Question X Gals- I'm finding that my hardest time on treatment is the day after I go off X. Anyone else experience this? Anything you do differently that might help the generally yucky malaise? I have planned my schedule to have it be a down day. Any thoughts or suggestions would be appreciated.
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Ebru, That's fantastic that you've been able to stay on X for so long! I just finished my first cycle. So far, no horrible SEs but I hear it builds up with each treatment. Is that what you have found? I would guess not since you have done 30! Did you plateau at some point or has it always been pretty tolerable?
Anyone have cracked lips? So far, my hands and feet are okay but my lips are cracked. Not sure the best way to treat it. Tried cold sore medication but it dried my lips even more. Just tried aloe vera oil and it seemed to help. That's what I put on my hands and feet.
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Well done, Ebru! 30 cycles!
I'm starting cycle 7 (I think) on Tuesday. My biggest complaints are fatigue & sore, cracked red hands.
How does no milk help?
My tumour markers had gone up last time- if they go up again I'll get scans. Hopefully it's all ok because xeloda is ok really. Easier than some chemos I am sure
Hope everyone is doing ok
kt
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Hi!
No milk cause it interferes with X. First thing MO said right at the start. Can't believe you haven't been warned.
Yes, SE's build up and that's not easy. But doable. All chemos have SEs. Trust me, fatigue, the main SE I've had on X so far. is not the worst SE of a chemo.
Some have HFS. I haven't yet. Instead I have been dealing with cracked lips and facial issues. Tried medical stuff MO offered, none of which worked for me. Discovered Sebamed Q10 eye cream works, weird but true. I have no major scars left, using it
The week off is the worst, that's why it's the week off. X is working! Focus on that and feel blessed the battle is on!!
)) Yogurt & cheese are allowed as long as they are consumed alone, not with other protein.
MO is a top notch one here, following all med society news and giving seminars herself. Not drinking milk won't harm.
Hope all see 30 and beyond.. I wasn't expecting this myself. Not easy. But DOABLE, whether it is X or another chemo.
Hugs & love
Ebru
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Starting my 8th cycle, and TMs down to 31 from 500ish.
Ebru: I'm fascinated as to why your MO said no dairy. I've not been doing milk as the milk fat contains bovine estrogens (cows have to have been pregnant to lactate, just like us). But, the Framingham nurse study points to lower BC rates in those ladies who ate fermented dairy products like yogurt and cheese, but higher BC rates in those who drank plain old milk. Maybe the fermentation degrades the estrogen? And your MO is super clever and knows all that already, while MOs here in the states wouldn't dare to step on milk's tail.
I can't eat fat (stupid gallbladder), but I have been using 0% fat milk on my raisin bran. You know how it is, take one anti-emetic and you'll never poo again. Raisin bran to the rescue. I can't stand it dry, and tried all the alternative milks. FYI: Hemp milk honestly tastes like grainy @ss.
Anyway, Xeloda is my new best friend. I barely have any hand/foot nonsense, and the fatigue is only a minor issue in the second week (two weeks on/one off).
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I too try to avoid dairy because of the research showing it's link to tumor growth. In the research I've seen, it's dairy protein that's the culprit, not the fat. According to what I've seen, you're better off eating butter than nonfat milk because the milk protein content is higher in nonfat milk. Check out the documentary "Forks Over Knives". At first, I was completely dairy free but it was such a hassle and I was losing so much weight that I now am okay if something has a little bit of dairy in it, like a cookie but I still avoid drinking milk even in my coffee. My nutritionist concurred that I should avoid dairy but she said small amounts are alright.
Who the heck knows but I drank and ate a LOT of dairy before I was diagnosed.
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I've decided to go ahead and start X instead of waiting until Jan. My tumor markers had risen again. My insurance co approved it today. It was filed under part B. Is this how everyone else's is filed ?0 -
When I told my doctor that I was ready to start X, thanks to you all, I was able to let him know that the easiest dosage was 3000mg daily,7days on and 7 off. He was really impressed, and said that is exactly what I was going to prescribe.0 -
I'm at the end of my first cycle back on the Xeloda. Just about NO HFS - feet are mildly pink and I don't feel any burning or pain. I don't have as much fatigue as I did on the higher dosage though I'm having on weird SE this week. Most days in the late afternoon/evening I start to feel achy and run a low fever. I take ibuprofen and it goes away and doesn't come back until the next day. Like I said, weird.
Leah
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Mscal, I hope the xeloda goes well- good you & your onc are on the same page
I hope this run is good on the xeloda, Leah. Lower dosage sounds nice. Weird about the fever though. I haven't had that. I hope it passes.
The worst thing for me at the moment (besides the fatigue & hfs) is my eyes. They sting in the morning & I have trouble keeping them open & focusing on things. Anyone else having eye problems? I feel like the chemo is leaking into them or something. It seems to ease a bit as the day goes in but they're always tired...
It's Saturday here now, so time to relax & catch up on rest
Have a good one all
kt
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Thanks kt1966! They'll arrive tomorrow . I'll start on Monday. We'll be celebrating Thanksgiving on Sunday. I don't want any surprises.When the Pharmacist called to explain how the X works and the side effects ,she was surprised at how informed I was.I'm just so thankful for these boards!
Carolyn
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kt1966--I also have been having problems with my eyes. It probably started on the 2nd or 3rd cycle. I'm on my 6th or 7th cycle now. I haven't been good about keeping track of them. I use artificial tears that I buy at the drugstore to make them feel better. I think it's all part of my body being drier. My skin is drier, my nose is drier and my eyes are drier. It's also getting close to winter here so that makes a difference too. I've also thought of it as the chemo leaking into my eyes and making them sting.
Here's a link to information about Xeloda's side effects: http://chemocare.com/chemotherapy/drug-info/Xeloda.... It lists eye irritation (watery eyes, inflammation of the eyelids, and redness) as a less common side effect (occurring in 10%-29% of patients).
Leah--it also lists fever as a less common side effect.
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well the scan results are in. Neither the xeloda or ixempra is working for me. They called me and had me rush to the hospital so that I could have pleural effusion drained before next week. Everything larger and new diagnosis of mets to liver. No way to know if they did anything for my brain lesions. I wish all of you the best of luck.
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Hugs Delierium Pie.
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D**n, not fair Delirium Pie.
I hope the next chemo works better, ((hugs)).
GemStateGirl- I've tried tear replacement stuff, doesn't seem to do a lot for me. I'm wondering about something 'oilier?'- will go to optometrist & see what they've got.
Its annoying, I drive for work & need to be able to see!
kt
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HI everyone, I dont post often, but just to let you know that it is my 2 year anniversary with Xeloda, and it is still working.
initially diagnosed with mets to bones, lungs, liver(innumerable) and brain(3) in November 2012... Ca15.3 tumour markers were above 500.
Currently, Mets in lungs and liver not visible and brain mets stable, bone mets also stable. Tumour markers in the 30's now.
Hoping Xeloda will continue to work for at least another 2 years, as the side effects for me are do-able. (my regime is 2 in the morning and 3 in the evening, 21 day cycle with 11 days on and 10 days off. ( I like the 10 days off hehe)
I hope this message gives some of you hope and positiveness with this treatment.
Warm hugs
Mandy xxx
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Thank you so much Mandy for posting this. I'll start Monday. This is so encouraging. I hope I get a long time.What do you eat for breakfast? I'm not a breakfast person,but I'm trying to figure out what to eat with the morning dose. What type of lotion do you use?
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msca102, I am not a breakfast person as well. I usually get up and have my 2 cups of tea and then about 1 to 2 hours after waking (9am approx), I have 1 slice of toast and a boiled egg (yuk but protein is a must and milk is a no-no with Xeloda for me, it gives me the runs and cramps). Then I will take Xeloda at 9.30 with a full glass of water to wash it down.
Tea time or dinner time for me is about 6pm or later (that is about 9 hours apart from breakfast to dinner). I try to take my time with dinner and perhaps have some dessert half an hour after dinner, so then I take my Xeloda about 7pm with another full glass of water. I do drink more than 2 litres water per day and although I love my yoghurt and cereal, I try to stay away from them and indulge when I am not on Xeloda.
The first 3 cycles were the worst for me, with cramps, diarrhea, blistered feet etc, but once the dosage is adjusted, I found that I could tolerate it. It seems to be one of the easiest chemotherapy drugs to take. I also noticed that the side effects got worse on day 12 with me, and that is why I decided on this weird cycle. Go with you gut feeling, I say, hehe.
I really hope that it works for you as well as it has worked for me and I just cannot understand why it works well for some and then not for others, very frustrating. Fingers crossed. xx
Warm hugs
Mandy xx
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Jen, you are right, cheese & plain yoghurt is strongly suggested for the protein.
Mandy, great news.. Hope for many more years for your affair with x.
Everybody else, just hang on.. if it's x, it's ok.. if not, still ok, for there are many more options.. we are a lucky generation with more than just a few chemo/ AI options.
For my facial blisters Sebamed Q10 eye cream worked wonders, surprisingly.. If you have similar problems I suggest you try that. I tried everything else none of which worked.. FYI.
Walking interestingly helps the fatigue. I figured once I get my butt off the bed / couch and go outside, even for a few blocks, it helps wonders. The more I walk (regularly) the more energetic I feel. Wish I discovered that earlier..
hugs
Ebru
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