All about Xeloda
Comments
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After having read a lot of the advice on this thread I had a very detailed conversation with my pharmacist when collecting my prescription of xeloda for cycle three.
I was told that it is important to take Xeloda after a meal as a full stomach is needed to help get maximum absorbency of the medication, to make it most effective. A glass of milk and a cookie alone is not enough, I specifically asked. My pharmacist also told me the idea is 12 hours apart but there is leeway in either time block, up to fifteen hours gap, which gives flexibility and makes it achievable. It needs to be within fifteen hours max in order to make sure there is consistent active xeloda in the system doing its chemo thing the whole time. So she said if you take it at say 9 in the morning, the ideal retake time would be nine at night but give yourself two hours leeway either way so any time from 7pm to 11 pm is fine. Keep a chart and write down the times that you take it. That helps.
Take it straight after food. The "take up to half an hour after food" instructions on the box gives slight leeway but basically my pharmacist said the stomach has emptied by half an hour or so after eating and we need to have the xeloda being digested with food. So taking it as soon as you have eaten, not half an hour after eating is best. The xeloda does not become the active chemo agent 5-FU until it hits the liver, so there is no toxicity in it in tablet form when we take it, so there is need to wrap it in any coating sweets as some women seem to be doing. The tablets themselves passing through the mouth and down the throat won't cause mouth sores. However a side effect once digested and absorbed can be mouth sores for some people. For me, I have a runny nose which is very annoying but no biggie.
My first cycle was fine, minor trots and fatigue, which did build. The second cycle the bowels were very active and I did feel very off colour and fatigued but again, manageable. I've taken to having a spare pair of knickers in my hand bag in case of an emergency when I am out and about. Meh. Fingers slightly pink. Using hand and foot cream as a precaution but again, hardly anything to write home about so far in terms of hand foot stuff. I am three days into cycle three, so far so good. My onc did say that one cycle can be rough, the next a doddle, they are unpredictable. I am hoping for a doddle for this cycle but early days, so we shall see. I did find that making myself exercise truly helped with fatigue during cycle two so I shall continue to exercise.
Anyway, I do hope that all this thinking directly from my trusted pharmacist about how to take xeloda is helpful to you all, and reassuring to folk who are just about to take the stuff. The bottom line is that every one has their own reaction to these medications, what hits one person badly may have no effect at all on others. There are plenty of people being treated at my clinic who take this medication and work full time, apparently. Yeay them!
Don't be scared if you are starting this medication by reading about the scary side effect - remember these are sisters who are struggling and posting because they are unhappy and need our support, and that is the amazing thing about these boards, the support is unconditional and the advise based on experience very wise. If you are just starting xeloda and feel scared, do remember that for all the people who do unfortunatlely have serious reactions, there are many many many more who do not. You won't know where you come on the side effects scale until you try it. But remember, they may be tablets so it does not appear to be as serious as having an infusion, but these tablets are STILL chemotherapy. They will be doing too things to your bad cells, but the impact on the body will happen. You will have side effects. But for me, the side effects compared to hideous Fec-T or Taxotere are a breeze. The stakes are so high here, and this drug seems to be so effective for so many. So give it a go!
Sending healing wishes to all xeloda girls.
Boo
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Thank you, Boo, for such wonderful and detailed Xeloda information! I found myself reading through your post a second and even a third time to make sure I didn't miss anything.I learned things from your post that I've never known despite being on Xeloda for over one year.
Thank you!
Kessala
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Thank you Boo, your trusted pharmacist sounds wise indeed. We should copy and paste this on the top of this thread for new comers.
About the eating before taking the meds, I discovered the more food I eat, the lesser side effects I get. So now I eat as much as I can, which with the nausea is not much. But I try. I am researching about shoes to wear for the HFS. One of the ladies here recommended birkinstock, but that got me thinking if it is the cork lining that is good.. so I have bought some cork insoles for my shoes. I will let you all know when I get them.
wishing everyone a good week ahead.
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Thank you Kessala, for your kind words, and thank you tigre. I agree, food seems to settle the nausea - carbs. But smaller meals also help on rough days. Some days fruit and veg are a bit of a challenge but I find that good old whiole food no sugar crunchy peanut butter on wholemeal toast gives me essential protein and fibre and stops the nausea.
It is important for us all to remember that xeloda may be tablets, but IT IS STILL CHEMO. Side effects will happen, but see beyond that - focus on the main impact - it is doing you good!
The other thing that I forgot to say in my previous post but I specifically asked my oncologist about: Xeloda does not just hit active tumour cells that are dividing. It also hits any dormant circulating tumour cells that have sloughed off from the primary tumour in the system that are just hanging out and not yet actively dividing and creating new mets. So it's good stuff. Worth managing the side effects for the good it will be doing inside our systems.
Take care all,
Boo
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hi Giovanni! Thanks for the great info on the uridine....I'm not sure if you posted specifics on how you make it yourself...I didn't see anything...
I orderd some uridine online, capsules, 250 mg....will that work? If so, can you explain how you make it? Do you mix into lotion or cream? And how much? Your link said the study used a 10% solution/lotion....
Thanks in advance!
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Wow! After reading the posts from the past couple days, I just learned a ton about Xeloda that I didn't know before and I've been taking it since April. Thank you all for putting the info on here. I was also encouraged from reading that this tx might knock this horrible cancer to the curb for a while and give me a chance to enjoy my life and my family for a while longer.
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I am on my third dose of Xeloda. The first batch of tablets I got were made by Teva and were peach in color and oval in shape. The new batch I got, (from a different speciality pharmacy) were white and oval and made by Mylan - so I phoned the pharmacist to check that there had not been an error. There was no mistake, Mylan has been given FDA approval as of August 2014 to make generic Xeloda. I just thought i would share. Also, I am using the Trader Joes Coconut cream $4.99 and it seems to be really helping my feet and hands. I did try the working hands, but it does not smell as nice, or seem to stay on as long as the Trader Joes does.
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I too am on generic capecitabine (made by Winthrop) I was on xeloda for the first 3 or so cycles. The main difference I noticed was a strange 'taste' on the new stuff for the short time (very) it was in my mouth.
For those of you who have been on it for a while - do you notice your eyes ache & are very tired? Also do you get big bags under your eyes? I do, it makes me look older & run down
Still, I shouldn't complain because I know SE's can be much worse than that....
Hope you're all doing ok
kt
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The dermatologist just called about the rash that developed after I started Xeloda. He said that the pathologist agrees that it is from Xeloda but may be lupus that can be associated with X. I will have some blood tests done later this week to determine if it is lupus. Has anyone on Xeloda had this side effect? If so did you stay on Xeloda or change chemo?
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The dermatologist just called about the rash that developed after I started Xeloda. He said that the pathologist agrees that it is from Xeloda but may be lupus that can be associated with X. I will have some blood tests done later this week to determine if it is lupus. Has anyone on Xeloda had this side effect? If so did you stay on Xeloda or change chemo?
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So--I just started Xeloda yesterday. I will be taking 2,000mg daily for the full six weeks I am doing radiation. I haven't heard or read of anyone doing this--has anyone else. Really my biggest concern is that fatigue is a side effect of both the radiation and the xeloda--I guess I'll have to wait and see.
Does anyone here have (or know of anyone who has had) any experience with this?
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I wasn't allowed to take xeloda whilst on radio, I had a week of radio for my eye and the oncologist refused to allow me to take it, I had to wait a full week which really frustrated me. I do think I would have been OK though as I didn't have any side effects from the radiotherapy. Good luck with it all.
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I've been on a 3000mg daily, 2 weeks on 1 week off. Just started last Wednesday. Like kt, I take mine at 7:30am and 7:30pm . I generally eat dinner earlier so I just make sure I have room for a banana or something at 7:15 or so.
So far, I haven't noticed any big SEs except for one really annoying one that started recently. Particularly when I lie down, I can hear my pulse beating in my right ear. I know it sounds crazy. At first I thought it was the washing machine. It's a rhythmic sound that won't go away. Anyone else have something like this? I'm thinking of going to an ENT.
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thanks for the info water lady
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I'm doing 3000mg/day, started Saturday, and just yesterday started feeling tired. Also on my fifth day of radiation....I've been on steroids too which give me insomnia, so I don't know if that's just catching up with me, or if it really is the treatment? Not too bad so far though, although I did wake up at 2am today with joint painin and took a vicodin which helped...
Good luck to you
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Thanks ladies so much for the information you've posted about Xeloda. My oncologist wanted me to start last month because my tumor markers are on the rise.I told him I wanted to wait until January. I'm currently on Faslodex and Xgeva. I was diagnosed Aug.13, with bone mets. I think this sounds as about as easy as chemo can get. I tried a sample of Affintor he had given me, and that was as far as I got. I knew after taking it for 7 days, I was unable to deal with the side effects. It will be winter time if I start the Xeloda, a lot less walking.
Carolyn
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Hi Moosan19,
Thank you for reaching out through private message. I had accidentally turned off e-mail notification of new posts, and I had not seen your message. I hope that the details I gave you, on how I prepared the uridine lotion, are enough. Please keep us posted, I'm eager to find out if it works well with you too, to minimize HFS side effects.
- DIY details about the composition of the topical cream for HFS:
- Uridine can be purchased on Amazon. The capsules are not uridine (which is hydrophilic, i.e. mixes well with water), but uridine monophosphate disodium salt (which is hydrophobic, i.e. it doesn't mix at all with water). However, I tried both and both seem to work. First I tried for one-month with capsules, then I tried 7 weeks of uridine chemical formulation, and now I'm on my second one-month trial of capsules.
- The capsules each have 250 mg of uridine ingredient, therefore at 10% they need almost 2.5 g of base. I use Cetaphil for the base, which already contains all the ingredients that facilitate skin absorption: approximately 1/2 tsp of cream per capsule. I found out that one capsule is enough for a dose, and with my wife using it in the morning and before bed, I started mixing two capsules a day. Now I do 6 days week at a time, with 12 capsules and 2 tbs of cream (my wife uses a little bit less than one capsule each time, therefore 6 days end up lasting for one week.
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Susan. I have the same thing with the noises - for me it is the left ear, and yes a washing machine is very much the sound. I was thinking I had tinitus and was going to ask my doctor about it. It is an SE of the strangest kind.
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I have the washing machine sound too!! It's swooshy and kind of rhythmic. It doesn't happen all the time. I associate it with stress, so maybe it's high blood pressure - even though my numbers are OK when they check.
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I have ringing, not whooshing, in my left ear. I don't hear it as much when I'm busy, but it's annoying when it's quieter. My MO may send me to an audiologist if it persists. And she said it can be a side effect of the chemo, even if it's not listed in the literature. Glad I'm not the only one! Hope it doesn't make you all too crazy....
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so today I broke down and had a pediatrist cut away some of each of my big toenails and a little of the toenail on the toe directly next to the big toe. This is in hopes of helping my toes finally heal after almost 2 years on Xeloda. I am hopfuly it helps as I am not too happy right now. the pediatrist basically said that i was getting ingrown toenails because my toes were so inflamed. But he can help me. Not my favorite SE of Xeloda, but one I will take for 2 years of stabitly.
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My wife has the same ringing, which started 3 months into Xeloda. I'm firmly convinced that her tinnitus it is caused by the chemotherapy, because capecitabine (the active ingredient of Xeloda) can cause nerve damage, and in most cases tinnitus is caused by nerve damage to the auditory nerve. So, in a sense it is not a new side effect.
I've had tinnitus for 30 years, and I know it in and out. What happens is that, some of the nerves that carry particular frequencies to the brain die; the brain then compensates for the missing frequency by making one up all the time. You don't have to worry if it doesn't affect your sleeping. Eventually it affects one's hearing, and language comprehension, at which point a hearing aid is recommended.
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having really bad leg cramps?? Feels like it's in my knees and ankles and feet...walking seems to help work it out a bit but such sharp pains...anyone else?
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I was having hideous muscle cramps, and my MO put me on potassium supplements. It got rid of the cramps by 95%. It seems that Xeloda (and any chemo, really) can mess with your electrolyte levels, leading to muscle cramping.
Hope you find some relief.
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thanks! I'll try it! I took a vicodin, then an atavan, then ate a banana, and it helped! :-) next time I'll just try the banana first
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Started Xeloda again! I never thought I would be so happy to go back on chemo. I've been off for over a month - I had an intestinal blockage which meant surgery (and of course complications) and I wasn't able to go back on the Xeloda until now. The CT scan that found the blockage showed the tumor on my liver stable, which means the Xeloda was working so that's why I was eager to go back on.
Dosage has been reduced - from 3000mg daily to 2500mg daily, still 2 weeks on, 1 week off - since I lost about 10 pounds with the surgery and aftermath, and I'm still pretty weak.
So we'll see how I tolerate it now. I didn't have too hard a time on the 2 cycles I did before - mild HFS, overwhelming fatigue the second week - but I have no idea how things will go now. But I'm hopeful.
Leah
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Good luck to you Leah, you have had a rugged ride there. It goes against the grain for me to take side effect meds before having the side effects, but I found out the hard way that I must do that, for gastritis and for constipation. Xeloda works fast and I can get in big trouble if I neglect the meds for side effects with each dose. I keep the fluids up, walk vigorusly daily, and do as much fiber as diet allows.
I know some one here had a doctor who was fine with them taking 2000 mg daily of X, and I wanted to know if others have been told that that could be an effective dose as well? I reduced my own dose down to 2000 a day in order to build up gradually to the 3000 a day I should be taking. So far, so good. I am in this for the long haul and want this med to work, so here's hoping.
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Leah I thought a se of X was diarrhea were you constipated?
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Maureen, I actually did have diarrhea, though that stopped when the blockage got worse. It wasn't caused by constipation. The surgery found my intestines were completely twisted/knotted and part was strangulated due to scar tissue from a previous surgery (oophorectomy) that wound its way through my intestines and literally tied them in knots. Painful? Let's just say morphine became my BFF for a few days before the surgery. When the PA told me she insisted that the doc order the morphine I was ready to hand over my firstborn in gratitude. Well, OK, he's 37 so might have a say in the matter, but still....
Leah
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I learn so much from all of you! I noticed my potassium levels were low too so I upped my bananas but did not know about the electrolyte issue with X. Thanks.
This is just an FYI from what I experienced this week and wanted to know if anyone else has run into this or a different med that did the same thing. I started Tramadol 3 days ago for some pain that I was having. This is my 'on' week so I generally have significant fatigue, however, I have been the energizer bunny since I started the tramadol. I hate to think about getting hooked on meds but I'm a totally different person and even my family noticed. I have heard Ritalin reduces fatigue too. I really hate not feeling productive. Here's what I did the last 2 days: Picked a batch of olives and started curing them, picked mandarins and shipped some to friends & relatives, shopped & went to lunch with my daughter, laundry, cooked & did light cleaning. I have a motto when I'm on treatment week: My goal is to get 1 thing done everyday and anything else is a bonus. I generally dislike narcotics because I don't like the way they make me feel but I haven't experienced that with Tramadol. Someone give me some feedback. I really don't want to become dependent on this drug. But DANG!
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