All about Xeloda
Comments
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I wonder if any of you are getting the same issue that I am.
I get gunk in my eyes which now has caused styes in my left eye-4 to be specific. It is itchy and annoying! Tomorrow I'll call my opthomologist.
Babs
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Babs, I get crusty eyes during the night, and most of my lower eyelashes have fallen out.
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Goldie. Me too. But these styes are ugly and itchy!!!
Babs
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Happened to my wife too. You can save yourself a visit to the ophthalmologist and use a very simple home remedy.
These are not styes but chalazion; the difference is important. The former is an infection; the latter is most probably a plugged eyelid orifice. In the case of chalazion caused by Xeloda, you can get rid of it by applying hot packs on the eyelid for 5 minutes 2-3 times a day. A fistful of rice in a plastic bag for and microwaved for between 20 and 40 seconds, works very well. It takes about a week to get rid of it.
What happens is that eyelids have glands that secrete an oily substance that helps lubricate the eye. For some reason, Xeloda affects the secretion and the oily substance tends to dry up and plugs the pores at the end of the eyelid. Once the pores are plugged, more oily substance production will accumulate and create a pocket.
Many of you have noticed either dry eyes or frequent tears. This is a manifestation that has the same root cause: less oily substance to lubricate the eye, thus dry eye and tears.
I hope this helps.
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Thanks Giovanni you are always such a great help to us!!!! These things look like they have yellow pus in them. yuck! They go from the top of my bottom eyelid all the way down on the inside. Plus they're itchy. I've been using hot compresses since they started
Babs
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Will be starting Xeloda next week...looks like great info here...lots of reading to do !
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This has probably already been posted but where do you get the T 5 antioxidant preparation
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Stilts, for T5 see this post.
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Well, I'm frustrated and disappointed. I took an extra week off Xeloda as my HFS got too bad on my 7/7 cycle. Saw the oncologist yesterday and my TMs went up over 100 points. Not happy! I have been on Xeloda for 1 year and my TMs had slowly but surely decreased 500 points over that time, so to me, this is a big increase. Although, my oncologist doesn't seem too concerned for some reason. I started back on Xeloda today, so will be praying my TMs take a decline next month when I do blood work again.
Anybody have this experience?
Also, I'm using the T5 antioxidant mixed with body cream - it definitely has helped the HFS - thanks, gciriani
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My wife started xeloda for liver mets about a month and a half ago. She is nearly finished her 3rd cycle of xeloda, on a regimin of 14 days on and 7 days off. Her tumor markers have fallen significantly at the end of the second cycle. In one 5 day period they fell 24.5 % However, she developed ascites at the end of her 1st cycle. The oncologist has scheduled an MRI for next week, so we will have a better idea of whether the xeloda is working or not. The significant fall in tumor markers is giving us confidence, but at the same time the ascites seemed to come on only after she was 10 days into her first cycle and its been getting better and worse and better from week to week. Anyone have any experience with treatment bringing on the ascites? The Onc thinks its possible due to an inflammatory reaction as the chemo kills off the liver metastasis. She's been getting drained weekly, with volume ranging from 1 liter to 3. It seems to go up and down and stabilize at times. Not sure if its related to where she is in her xeloda cycle, or what factor(s) might be influencing it.
Also, my wife is suffering HFS pretty bad. We have lowered the dosage of xeloda to 1300 and then 1150 mg twice daily. She's using urea foot cream, ice packs and has recently started on celebrex. We've tried vitamin B6 and vitamin E, but it doesn't seem to be helping with the HFS. Hopefully the celebrex starts to work.
Anyone know if a person's diet could significantly influence HFS? I've read that a high folate diet predisposes a person to HFS. My wife eats a lot of spinach in her morning smoothies. Crazy theory??
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Timothy, do you know where you read that about folate? I have MTHFR and my system requires a lot of folate, so I am interested in this.
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Here's the article in Medscape that I read. I hope it shows up for you in this link.
http://www.medscape.com/viewarticle/583704_3
Here's a snippet:
Dietary Folate Intake
Another reason for the poor safety profile of fluoropyrimidines in the US might be related to differences in dietary folate intake, especially given international variation in policies for folate fortification.[16,17] The mechanism that is probably the most important mode of action of fluoropyrimidines relies on the presence of folates—binding of the 5-FU metabolite 5-fluoro-2'-deoxyuridine 5'-monophosphate to TS is stable only in the presence of the reduced form of folate (N,1 N[10]–methylene tetrahydrofolate).
A relationship between dietary folate intake and both the efficacy and safety of fluoropyrimidines is supported by preclinical data. In a breast cancer xenograft model, 5-FU-treated rats fed a high folate diet had improved tumor response and prolonged survival compared with animals fed a low folate diet.[18] 5-FU toxicity was also shown to be significantly increased in rats receiving a high folate diet.[19]
In addition, two recent clinical studies have indicated a relationship between dietary folate intake and fluoropyrimidine toxicity.[20,21] In one study, 86 Canadian patients receiving adjuvant 5-FU and leucovorin (Mayo Clinic Regimen) were prospectively assessed for biomarkers of folate metabolism. Multivariate analyses identified baseline serum folate as an independent positive predictor of grade 3 and/or 4 toxic effects and/or dose modification; the odds ratio for grade 3 and/or 4 toxic events for each 10 nmol/l increment in serum folate was 2.20 (95% CI 1.12–4.34; P = 0.016).[20] Similar results were found in a study of capecitabine monotherapy (2,000 mg/day dose on an intermittent schedule), in which patients with higher baseline levels of serum folate had a significantly increased incidence of toxic events (P = 0.005).[22]
Folates cannot be synthesized endogenously by humans, and total body stores have a daily turnover of around 1%. Food sources rich in folate include green leafy vegetables, liver, legumes, citrus, fortified cereals, pastas and grain products. Naturally occurring (polyglutamyl) folates must undergo deconjugation before they can be absorbed in the small intestine. After absorption, folates are reduced to the active form (tetrahydrofolic acid) by dihydrofolate reductase, and this active form is stored mainly in the liver.
The US has an aggressive policy of fortifying food with folic acid, and requires that all flour, rice, pasta, cornmeal and other grain products are enriched with 140 μg folic acid per 100 g. Similar programs have been initiated in Canada and a number of countries in South America and the Middle East, but are unusual in Europe. One could speculate, therefore, that folic acid supplementation could be a major factor contributing to the perceived excess capecitabine toxicity noted in the US.
Two other pieces of indirect evidence to support this view can be gathered from the drug development paths for the anti-folate TS inhibitory agents raltitrexed and pemetrexed, in which low serum folate levels and few adverse effects have been observed. It is hypothesized that US patients tolerate higher doses of these agents than do European patients because they have reduced folate in high amounts in intracellular pools, which competes with the drug for target sites on TS and reduces the degree of inhibition of the target enzyme by the drug, thus attenuating toxicity.[4,23] The subject of inter-regional variation definitely warrants further prospective evaluation in appropriately powered clinical trials.
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still dating X !!!!! New will be in detail on my own thread in a bit..
My rockstar MO is a rockstar!
Will see how longer X hugs me:))
Ebru
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Hey Ladies. As of this coming Thursday, I will be joining your ranks. After 11 months of Gemzar, Carbo, and Herceptin, my pet-scan last week showed some progression. The original mass in my breast got a little bigger, and a new swollen lymph node popped up. My doc wants to get ahead of it and change drugs now before the progression continues. A spot also lit up behind my esophagus, but my MO thinks it might be acid refulux related. She is setting me up with a GI specialist to confirm what it is. Not sure what my pill schedule will be yet, but I'll get all the information on Thursday, as well as continue with my herceptin infusions (i have both triple negative and triple positive cancer at the same time).
I'll go back through and read some of the posts so I'll learn what to expect before I meet with my doc, but wanted to pop in first and say hi.
So between this and the diagnosis of 7 brain mets in February, which has left me with a seizure disorder, so far 2016 and my 35th year, is off to a banner start.
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Hi All
I started using Giovsnnis suggested solution of T5 antioxidant with regular cream this past week and I'm very happy to report that it has REALLY helped my feet. What a difference!!!!! It hasn't worked as well on my hands- maybe that's because we always use our hands. But it's a definite must try for those having hfs issues. Thank you Giovanni!!!
Babs
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Becs. Sorry you have to join us here but welcome. I hope that Xeloda works well for you!!!!!
Babs
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I need to look into ordering some T5. My hands and feet are getting bad. Very painful.
Becs, I hope X works for you for a long, long time!
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As you may have read above, I am gearing up to start Xeloda this Thursday (6/16) and I was wondering how soon afterwards did you start to feel side effects? I know everybody is different, but I was hoping to be able to get some kind of average.
A week after I am starting (6/23), I am scheduled to go on vacation, a week long road trip with a friend. I am going to ask my MO when I see her, but I am wondering if I should cancel it. I got travel insurance so I will be able to get my money back, but I was really looking forward to going and would hate to cancel on my friend (although I know she will totally understand).
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Becs,
I am not a great believer in canceling happiness. So, be prepared. My first cycle, the most obvious side effect was an "off" feeling in my GI system, with a bit of nausea. I did not vomit though I did have a bit of diarrhea. So, have some compazine and perhaps a bottle of stool softeners and immonium. To help with the nausea, I only needed to eat a snack, so plan your vacation so you can grab a yogurt or something if you need to. Make sure you have a water bottle and keeping drinking water.
And most of all, have a great time!
*susan*
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I had an awful time on my first round, but they started me out on 7 pills a day. So that will play a factor in how you will feel. As bad as I felt on the first round, I was going to quit, not going to live my life that way. The HFS is more accumulative, so shouldn't be too bad to start off. You can also have constipation, but diarrhea was my MO.
If I were gonna cancel anything, it would be Madame X!
Good luck Becs and enjoy. Where are you going?
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Scheduled to start Xeloda on Wednesday and I'm VERY nervous 😖 I certainly want it to be effective but of course the side effects worry me...I have ordered the T5 so would like to thank those who posted the info for me...sounds like it can just be mixed with your lotion?...I am starting on 2000mg twice daily...I am tall and overweight...I checked the package insert to find that the dose for my ht/wt could be higher so I'm going to double check with ON
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Stilts,
Welcome to Madame Xeloda! I hope that you have an easy time of it, and that it works well for you.
*susan*
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Just heard back from ONC...4 caps twice daily is the highest he will go to start to avoid severe side effect
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Becs- the first few rounds I had mild nausea-so ate bread which I normally don't eat. I didn't develop the HFS til later-as others have said its cumulative.
Stilts- I also started with 4000 mgs-I'm down to 3000 now due to the SE's.
I hope you're both VERY successful on X
Babs
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hi all, I have not been on site because a lot going on & my energy has actually been better. My youngest of 6 graduated HS couple weeks ago, which was a major goal I set in 2009 as I watched son #2 graduate HS. Last week we went to 2day orientation in Tampa, UNi. South Florida , I was so thrilled to be with him, he was being homeschooled when I was initially dx, & was so helpful to me when I was going through chemo, surgery & radiation. Welcome new ladies , so sorry u r here, u guys r so young & courageous . Becs-- I agree, take trip, I held off treatment last Christmas thru New Yrs so I could enjoy family during Christmas & trip we planned for New Yrs to NYC. I started on lowest dose, my dr likes to go up instead of down & I am doing 7 on, 7 off. Only SE week 1 was loose stools one day, Imodium helped. Now I am on week 3 of meds, 1500 in am, 1000 in pm. My eyes itched over week-end which I thought was due to cleaning, & dust, but after reading above, I am rethinking that. My week is up Wednesday, so we r joining friends for a white water rafting trip this coming week -end. Hope u guys do well. Su
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Becs, I wouldn't cancel the trip. I don't have symptoms until the last few days of the course. I travel regularly for work and/or personal and don't plan it around my Xeloda. Went on a weekend trip to NY this past weekend (ran both days in Central Park, in addition to the touristy walking around; and took a 10-day, 3 city vacation in May. Also, some studies show that higher age is associated worse side effects on Xeloda, particularly HFS. Since you are so young, you may fare better than some others. Would recommend taking a probiotic if you don't already. It may help prevent diarrhea. I haven't had diarrhea on this med yet although recently had a slight bit of constipation from Xeloda.
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Stilts, good luck on those 8 pills, that's a lot. And he says to start with 8? He plans on increasing it? I had horrible cramping and D on 7 pills. A year later, I'm doing 6 pills a day. 2 cycles ago, I tried to go back to the 7....ain't happening.
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Thanks everyone for the insight! My "sister" (we have known each other since we were 6), just finished her PhD! at the University of Florida and got a professor position in Minnesota. I am going to help her drive her car up there. And by help, I mean keep her company as I have been banned from driving due to brain mets and seizures. We are taking a week and a really roundabout route to get there though. One of my goals has always been to visit (airport layovers don't count), all 50 states. Right now, I am missing 6 but through this trip I plan on adding 3 more. So I will only have 3 left (Idaho, Colorado, and Oregon)!
I figure if we are in the car, it won't take a lot of energy on my part and there will be plenty of rest stops in the case of bathroom issues. But def. one of the top things I need to ask my doctor about on Thursday. As experienced users, anything else I should be prepared to ask her about?
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Becs, I guess it depends on if you are going to start X before or after your trip. But it sounds like a fun "sister" road trip. If you are starting before, I think your biggest issues would be diarrhea vs. constipation and cramping. Maybe some fatigue, but that's no big deal. And even if HFS reared it's ugly head, it shouldn't do much on your first few cycles. But....we are all different. What works for one, doesn't work for another.
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