All about Xeloda
Comments
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Hate to be the bearer of yucky news but I am just finishing round 10 and the fatigue doesn't seem to lessen. On 7 days on, 7 days off. Start med on Wed. Wed and Thurs. ok but then Friday through the next Friday are really low energy. We have been on a trip during the bad days for the last five rounds, trying to see family and old friends, and today I am literally dragging myself from chore to chore.
The H&F improves the last days before I start med again; still searching for the perfect shoe so I can walk for exercise.
Hope to get an answer the rash when I see the dermatologist on Wed. It itches when I get warm so my back seems to itch the most when I am leaning against a chair or under the covers.
Even with the side effects, last PET showed tumors shrinking so I will fight to stay with it while it works.
Hoping for get results for all.
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So it begins. My first HFS, midway into second cycle. Just an itch now, but I can see dark spots appearing on both hands and feet and bits of skin peeling off. I have not been looking forward to this. I come from weekly Taxol and am finding this much harder, especially the fatigue. But I will say olive oil is quite wonderful.
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olive oil?
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The perfect shoes: http://www.amazon.com/gp/product/B00E83OSYY/ref=o...
They are kind of ugly. I mean, they are Birkinstocks after all. And, they are expensive. But, they have no seams inside the shoe, are easy to put on, and the cork footbed keeps heat from being trapped against the bottom of your foot. I've got the whole HFS thing, and I can hike for up to two hours with these shoes and a good pair of wool socks (Smartwool seem to be working out the best). I won't win any fashion prizes, but my feet remain blister-free.
I made the mistake of wearing the wrong shoes two weeks ago, and in just 30 minutes had managed to develop some large blisters on the ball of my foot. Lesson learned. Bearpaws for roaming around the house, and these babies for when I need a more supportive shoe outside.
Now, if I could jut learn not to pick at my fingers!
In about 5 cycles, TMs have gone from 600ish to 55. More Xeloda, please. I am having the odd problem with fatigue and am working hard at keeping a happy brain. Does this stuff affect anyone else psychologically?
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I have to say that being on Xeloda has not been a bad experience for me and I've been very surprised. I have had all kinds of nasty trouble with all my treatments so far until now. I am slammed with fatigue the first two days I'm on it but that eases up somewhat the remainder of the week. I have some mild digestive and intestinal upsets for a day or two. My feet burn like fire some days and other days I just have pain when I walk. But no blisters or peeling. My hands do not have any symptoms. After reading about so many of you having such bad SEs, I wonder if adjusting your dosage and/or cycle would help. I am on a 7/7 schedule. I notice a lot of you are on a 14/7. I can't imagine taking X for two weeks straight. Initially my Onc had me on 2000mg twice a day. But I was so nervous about it he said we'd try starting out with a low dose and work our way up. So I started with 1000 mg twice a day. After two months I went to 1500mg twice a day. After three months on X I had a follow up scan of my liver. It showed the cancer was gone! I am still on 1500mg twice a day. I have a good relationship with my Onc. If I was having as much trouble as some of you are I would ask about lowering my dose and going to a 7/7 cycle to see if that would give you any relief.
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did anyone's tumor markers increase between te first and second cycle and then decrease? NP says it's possible for them to flare after the first treatment, but she says a lot of things just to shut me up. Worried.
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Hi to All, and to Sammiryan and SusaninSF especially, as we are each grappling with management of mets to the eye, among other places. I am restarting Xeloda on Thursday after almost a month off. They reduced the dose by 500mg, to 1500 and 1500 daily. My feet had been really painful towards the end of cycle two, but they got better within four days of being off the med. I had some rugged gastritis also that took three weeks to clear so that I could stop the antacids. My plan is to enter this cycle fully prepared to take adequate doses of antinausea and antacid meds, and to stay on top of the bowel situation. No more holding back on the side effect meds. I will do daily walks as long as I can. I have scans in late Nov. which is when the Xeloda gets evaluated as useful or not. My eye has worsened a bit since going off it, but not by much. Here's hoping. Susan, keep us posted. It IS a big deal to do chemo. I was shocked that I had to do it, but six months after starting it, am more able to work it into life now. Especially one that allows hair to grow back and less visits to the chemo lounge!
Hugs to all, Mame
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I forgot to add that I if it's not convenient or time to take my dose when I'm eating I started taking it with a glass of milk - at least 8 oz. I drink half the milk, then take my dose and drink the rest. I'm not a morning person and don't want to get up at 7:00 am and fix something to eat just so I can take my X. So far I haven't had any problems with taking it with milk. Now that I've typed this I didn't think to check to see if milk is contradicted when taking X. Guess I better check on that. Ha!
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DP- Yes, I have heard that is normal for your tumor markers to go up. Supposedly, as the cancer dies there are a lot more cancer proteins that show up in your blood and the test doesn't differentiate between dead proteins ones and live ones. Hope that gives you some peace of mind.
Sherry - I agree with you, I am on 7/7 schedule and I could not imagine doing the 14/7 schedule. I count down till my 'good days'.
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yes Maureen. I slather olive oil on my hands and feet every morning before showering. It seems to work with the HFS
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Stella, DeliriumPie, I am so sorry to hear that you are having a hard time with X. It affects us all so differently. I would discuss with the MO if you can switch the treatment. Quality of life is important. I've been on X for almost a year, just finished cycle 16. I am so fatigued. CT is coming up next week and I am hoping for stability. Hugs to all.
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I am so glad I am not the only one struggling with fatigue on Xeloda. I have found it worse than weekly taxol. But if it is working I will happily put up with it.
I start my third cycle tomorrow and am seeing signs of HFS. The skin around my toes is peeling and I have one or two red areas, too. I am on two weeks on/ one week off and during my week off my the soles of my feet have gone from feeling numb in places to feeling that I have sand in my shoes. Nothing showing on my hands except a bit of numbness in the finger tips.
tigre, do you mean before showering or after? If I did it before showering I would be worried about slipping in the shower.
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weird but good news.. Currently on 29th cycle with an interesting sex drive
hang on ladies life's still going on. I feel like a teenager discovering sex after soooo long. You get what I mean. Not that I ever stopped it totally, but now I'm jumping on DH. That's interesting... Xeloda may be working in so many ways or not?! Anyway just a laugh at least.. We need that too. Slight increase in TMs in the past two months .. 
but sex is good 
as long as this phase lasts..Hugs
Ebru
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hey...just trying to jump in here somewhere. I took my first dose of xeloda today. Been reading the message boards and everything seems so scary. Any tips would help.
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Hey...haven't had a sex drive in years. Will keep up with your story.
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MameMe,
I hope the lower dosing helps with your SEs. I'll be on 1500mgs twice a day. Take my first dosage in a few minutes.
My eye tumor has shrunk to almost nothing and my retina is no longer detached but it was detached for so long I fear I have some permanent loss of sight. My vision in my right eye is spotty so I can't read anything with it. Can see pretty well with it without the details so driving is fine. Getting used to living with the loss and my brain is kind of re-wiring to compensate for it.
Better get over and take my first dose!
Hugs, Susan
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sitting here with the pills from the pharmacy and I'm terrified to start it. Maybe Friday
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Have you started, Maureen? You might not get bad SE's, and not right away anyway- it can take a while to build up.
I'm on cycle 6- the worst SE for me is fatigue, but I just have to pace myself to get things done. Lots of rests between jobs!
The HFS is a nuisance, but apart from a few cracks and a bit of soreness, not too bad- lots of udder cream multiple times a day helps.
Hope it goes well
kt
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haven't started. I'm scared.
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I'm sorry- try not to be scared (easier said than done I know)
If you do start have SEs you don't like you can always talk to your onc about dose reduction..,
I would think that the other chemos you have already done would be tougher than X! So I'm sure you can do it
Hope it goes well- thinking of you
kt
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Maureen - Hopefully, the sooner you take it the sooner you it shrinks or disappears. Think about that next awesome scan you are going to have. We are all rooting for you.
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My relationship with Xeloda is ending soon. It was never kind or good to me. I developed a lot on Xeloda such as Anemia, Mets to liver and all type of pain. It was the worst 3 months of my life. I am so numb I don't have anymore tears. I so hate cancer. It takes everything away from u. The last three months I had no quality of life what's so ever. Hopefully once my new drug is in place I will feel better. Lots of luck to u all and may u only see success with the big X.
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thanks ladies. I will start tomorrow. Hopefully it will kick the crap out of the stupid cancer
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Hi Maureen813,I've been taking Xeloda for over one year. My dose has been reduced twice due to hand/foot problems. Like you, I was panicked about starting Xeloda. It's my first chemo.
Since you're nervous about starting Xeloda my advice to you is start taking your Xeloda Monday morning when you know your doctor's office is open and fully staffed. Then if you should have an unexpected, rare side effect your clinic is up and running. I don't like starting new medications over the weekend because I don't want to have to deal with the "on call" staff.
One great thing about Xeloda is that you can stop taking it at any time. Simply phone your doctor's office to tell them you've discontinued the drug and why. It's not like you've been given medication by an I.V. and if it's too strong you're out of luck. You can stop Xeloda on a dime.
Keep track of any and all side effects. Report side effects to your doctor by phone if you're not scheduled for an office visit. Let the clinic at least update your chart with your side effects.
Take Xeloda with a meal or shortly thereafter. You want to take Xeloda on a full stomach.
You've had prior chemos so you know how your body has reacted to them. I think you'll find Xeloda to be much gentler on you than I.V. chemo.
Always remember - you can stop taking Xeloda at any time. Don't panic.
Kessala
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I had 3 cycles of xeloda twice daily total of 5000 Milligrams..morning/nite doses...I was 14 days on 7 days off for 3 cycles...it caused me to have a ruptured bowel due to the side effects of Diarrhea severe infection..... almost died April 28 2014.....had to have 2 ft of my colon removed along with a colostomy bag,,,but continued on it until June 17th....stuck it out...but I was life less...sick daily in bed daily...couldn't eat...etc...so I finally told OC that I rather die then cont...like this...and they game changed me to Taxol IV...and I have been living life daily ALIVE!!! I don't know how some of you ladies handle that Xeloda...phweeee...my hat is off to you all...Carla L&R
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Hi freebird53,I've never heard of anyone taking such a high dose of Xeloda as you were. I was initially started at 4,000 mg per day and by day 10 my feet were so painful I could barely walk! Even 3,000 mgs per day was too much for me. I'm currently taking 2,000 mgs per day and some cycles it's "iffy" as to whether or not I can complete my 14 days "On".
It sounds as if you were vastly overdosed. What horrid results!
My 84 year old mother was taking Xeloda for stomach cancer. When her side effect of severe diarrhea started she considered it due to the flu and refused to phone the oncologist. Despite my brother and I pushing her to stop taking Xeloda and CALL THE DOCTOR she continued taking her full dose of Xeloda for an additional three days. By that time she had to be admitted to the hospital with unstoppable diarrhea. Nothing that was done for her helped. She passed away after one week in the hospital and I blame the Xeloda for her death.
Unfortunately I have to put a portion of the blame on my mother. She was told time and again by her oncologist and various chemo nurses plus my brother and I to report any and all side effects immediately. She chose to pretend she had the flu and blew off all the advice.
Your situation is far from the norm and shouldn't scare off other Xeloda patients. I suspect in addition to your dose being too high, when you reported your side effects right away to your doctor you weren't told to immediately stop taking Xeloda. It was an unfortunate situation all around.
Thank God you're okay now, freebird53! What a frightening ordeal.
Kessala
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Thanks all for the wonderful advice. I started today with 1500 mg am and pm. I wish I'd checked this thread. I like the idea of waiting till Monday but too late now
Just curious. He told me to take every 12 hrs and I don't know what to eat? Today I had peanut butter on a piece of toast. What do you eat at 900 at night? I'm not a late night eater? Other than cookies
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one more question: what is the concentration you take daily? I'm on 3000mg and thought that was high dose. 5K just blows my mind, then to continue after se such as a blown colon?! Wow
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Hi Maureen813,I don't know who you're asking these questions of so I'll just answer them with my personal information.
I take 2,000 mgs of Xeloda daily.
I wouldn't worry about spacing out your Xeloda doses to every 12 hours. Yes, in an ideal world that's how we're supposed to take Xeloda but in the real world the most important thing is to take both your doses sometime between waking in the morning and going to bed at night.
Since I'm retired I sleep late and don't feel hungry for breakfast until sometimes as late as 11am. I'm certainly not staying up that night to take my second Xeloda dose at 11pm. Whenever I eat breakfast I take my Xeloda and whenever I eat supper I take my second dose of Xeloda for the day. I've long stopped worrying about spacing doses out 12 hours apart.
Kessala
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Hi again. I'm on 4000mg/day. I try & keep the doses spaced 12 hrs apart give or take 1/2 hour or so. So long as you have something in your stomach it's fine.
Sometimes it's only a banana and the water I drink to help the tablets down - so far so good
So I usually have them around 7-7:30 am & pm. I hope your se's are minimal. It can take a while to kick in.
All the best
kt
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