All about Xeloda
Comments
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Interesting study, Chickadee...thanks for providing the link. I'll be starting X when it arrives in the mail, probably next week sometime. I have no idea what dosage my onc has recommended so I'm curious to find out. I just know I'll be on the 7/7 schedule. I see from your link that HFS is the most common se. I hope the 7/7 helps lessen that effect since I'm a knitter and text a lot, plus typing on the computer. I realized today that the skin around my fingers are already a wreck so I need to get on that before I start the meds. Wishing us all luck with se and results!
Cynthia
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Had calf pain, turned out to be a DVT. Have to inject blood thinner once a day now. Not a big deal, but one more thing to manage. Doc said some people can switch to oral meds after 3-6 months, but not while on Xeloda. Too many complications with oral.chemo and oral blood thinner. The adventures of cancer!
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Urgh. Sorry to hear about the DVT but good that it was caught. Those mini-injections are no fun but in the big scheme of things are manageable.
I had a melt down yesterday as I sat down to take my meds last night - 4 Xeloda, 2 Ibuprofen, 2 Paracetamol (it was a bad headache!) 1 Ativan, 1 Zopiclone, 1 Omeprazole, 2 Dexamethasone... Before BC, I never took pills and man I remember the days when I could barely choke down a tiny contraceptive!
Hope you're feeling well otherwise and the X is treating you good.
Lx
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Chickadee : thanks for the info. If this gets bad I'll be sure to give it to her. I need to keep working. I can't afford 5 mos waiting for ssd to kick in. question for you, do you know if vit x causes a drop in blood sugar? I've noticed the past two days that when I feel hungry I start to shake and feel weak. I was hypoglycemic when younger but havent had any problems for years so I recognize the symptoms. Should just be the added stress that x is putting on my body.
Cynthia1962: Been lathering my feet and hands and sleeping in socks and gloves hoping to hold off the hf. I was freezing all winter due to meds and wouldn't you know it, now that summer is here, this Zelda seems to have kicked my body heater into overdrive.
Alesta29: I'm sorry for what this disease does to us ....up..down..hot..cold..inside..out....
Sounds like you are going through what happens to me on news of changes. I flip from paralyzing incredible fear to crying uncontrollably to frantically searching for a way out to the over happy even giddy face then seems to come another meltdown just before acceptance and moving forward. I hope you journey through this tangle of emotions is a short one.
Pet junkie: so sorry you have to give yourself injections on top of everything else.0 -
Frapp, I don't know about the blood sugar drop. My appetite is flat in the on week. Could be though.
I went looking for Phase2 study and found it but it adds Avastin so the results werent for X alone.
Well, day 1 of on week, drag out the pills. :-(0 -
Chickadee. Feeling for you, for that last statement, 'drag out the pills'....I have been off X for a month now and STILL have the creepies on the tops of my hands and feet. Still have bone pain. The nausea seems to finally be gone. I am waiting to feel better......but I had scans again, and they were all clear again--NED in the chest, abdomen or bones. That felt great! Just hope it continues......
Thinking of you all and hoping for low to no side effects, no pain, no nausea...but that your Xeloda kicks cancer's butt!!!!
Much love,
Sue
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At this point I'd be stunned if NED ever visits me, even for a little while. However, when someone finds NED and keeps him close, then I can keep hoping. And Hope springs eternal as they say.
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Day five and so far so good. Made sure I enjoyed every day of this long weekend holiday just in case I get hit with se's from vit x. I've been putting cream on every night and have learned to sleep in socks. I've tried to catch up on what to expect by reading the first 18 pages of this thread. Thank you to all who contributed. It really put my mind at ease.
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Alesta, I'm surprised you are on 2000 twice daily. I'm 5'9" and weigh considerably more than you and am on that same dose. My doc did some sort of calculation on my weight to get the dosage amount.
Am having some chapped lips. It seems that every medication I have been on so far effects my lips first. They get red and chapped right at the outside lip line on my upper lip. Using lots of lip balm and coconut oil. That seems to be helping.0 -
Frapp,
I'm actually on 1500 in the am and 1650 at night. I got my height and weight done again yesterday and I appear to have shrunk! I always used to say I was 5ft 3 and 3/4 but it seems now I am only a shade over 5ft 2 and a bit!
So far so good with only a bit of foot pain under the ball of my left foot which makes changing gear in the car a bit painful when I push down the clutch. Getting really fed up wearing socks and crocs though! Went into a fab store in Covent Garden in London yesterday called the natural shoe store which has the most amazing collection of flat, comfy shoes but unfortunately most of them have a wooden footbed or suede on the foot so not suitable. Ended up buying a pair of those FitFLops today because they are really soft but I think the toe post (thong) thing is going to cause my toes to break down so looks like my 12 year old got herself another pair of my rejects!
Laurie x
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Almost done with my first round...so far, so good. My hands and feet look good, although my scalp has been feeling the creepy-crawlies (my chemo nurse said a rare side effect is hair thinning) so I switched to baby shampoo, only washing my hair a couple times a week, and strategic use of wide headbands to hide my oily scalp. I'm about 5'4 and am on 2000 mg a day (14/7). The doctor said if this works she's keeping me on it but may adjust up slightly if she needs to - she prefers the lowest effective dosage to keep side effects to a minimum. I like that philosophy since I'm the one who would get the side effects.
Since my switch to Sloan, I've been amazed at the amount of support and information I have received from them regarding side effect management. One thing they did was to give me a calendar to track them for the first two rounds to tell if it's a pattern and to keep this new "taking medication every day" routine in my head. Much of it I'd read on here but here is some stuff I hadn't:
"Metallic taste in mouth" - citrus marinades, dressings, slice of lemon/lime/apple in water somehow seem to take it away and let the food just "taste normal" ("my other patients swear by it")
"Big D" - Immodium as needed after three loose stools. Also Gatorade or other electrolyte replacing drinks. Hydration is important.
"No supplements" - nutritionist/nurse/doctor all said "No multi" and "No B-group" because Folic Acid can effect how Xeloda is metabolized. Highest quality diet of foods in their "whole state" is what they recommended. Grapefruit is the only food banned - also effects how body processes meds. Also lots of protein - edamame was fine not only because I'm hormone negative but also again it was soy in it's "whole state" but soy as an additive to things to up the protein was not good because it is too much. Likewise drinking green tea is fine but not green tea pills.
"HFS" - Doctor said one of her patients swore by a cool foot bath with baking soda. used this in my home foot spa and it does feel nice.
Shoes - I find that my Bass "H2O" shoes are good. I have one pair that are like vented sneakers that velcro in the back so I can adjust them - not the most stylish look but with a pair of low-cut socks they aren't too bad. They are just not "sneakerish" enough that I can wear them to work with beige pants (they are a beige-ish color) and I can get away with it. Also have a pair in a flip-flop style which have good support and a wide area on top. Much more comfortable than the $5 pair I usually grab for summer wear and my feet felt good over the hot, rainy Memorial Day weekend we just had here. I am a flip-flop girl (I HATE socks and would usually be barefoot) so I am hopeful these will be my saving grace over the summer. There is a Crocs store by me which I'm going to hit up soon - they have lots of cute shoes which look work appropriate (not clogs) so I hope I'll find something there I can wear with skirts, etc.
Lotions - I have a big thing of Vaseline Intensive Care by my bed - old school but I love it. I just have to use it frequently but at home I don't mind. It's light enough that I don't feel too slick and actually helps my feet feel cool (I hate hot feet). I don't care for the Udder Cream which came in my Xeloda pack - what good are my hands if I can't use them properly because everything slips out of my fingers? I like Bliss Intensive Hand Creme (smells awesome) and L'Occitane de Provence Shea Butter hand cream - heavier but it blends in so well (I got it as a gift and it is expensive but I love it so much it may be my "splurge"). However, my hands are not bad so it may not work for everyone.
Best tip I got from the boards was the Prilosec - got heartburn once (not something I've ever gotten in the past) and found it helped enormously. Also when I took my pills with not enough food in my stomach. My doc gave me anti-nausea meds but I hate to use the big guns if I don't have to.
Hope this helps someone...
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Great information, but now I'm frustrated. I was looking at my blood test from last week and researching components. Slipping a bit into the Anemia world and B12 and Folic Acid are recommended. Have to find them in the food world I guess.
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I just received my Xeloda by courier this morning. My onc has me taking 1500 mg twice a day, 7 days on, 7 days off. I'm 5' 2 1/2" tall and about 107 lbs. It seems like a lot. I hope the 7/7 schedule helps with the side effects.
I have a question about when to start it. We leave to visit family on Friday and will come home on Monday. It's a 6 hr drive each way and we'll be staying in a hotel, all things that will make me hurt. So, I'm thinking that I want to hold off beginning the Xeloda, but I'm not sure until when. I've considered that the side effects probably take awhile to begin so perhaps I could begin on Sunday, but then I worry that if it does make me feel nauseous, I'll feel sick for the ride home Monday. Should I just enjoy the only thing we have planned this summer and start Tuesday??? Do you think it's that big of a deal? I stopped taking the Megace completely as of yesterday, or the day before so I feel unprotected even though it wasn't working anyway.
I'd appreciate your insights.
Cynthia
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Hi Cynthia
I'm around 5ft 3 1/2 and 125-130lbs and am on 1500 am and 1650 pm. I am also a bit of a 'sicky' person - fairgrounds, driving, smells etc and I was worried I would feel nauseous but have been fine. ALso worried about the 'explosive diarrhoea' but have had none of that. I'm on day 10 of my first cycle (2 weeks on, 1 week off) and apart from a little pain under the balls of my feet am fine. Should mention I've been on steroids (brain mets) so it may be that these are dampening down any inflammatory symptoms I could get with the X.
Not feeling tired either but again, putting that down to being wired on the stroids.
Hope it goes well for you.
Laurie x
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Hi Cynthia! Just my opinion of course, but I don't think waiting a few days to start will make any difference. That said though, most do not have side effects appear quite that quickly so you should be fine even if you do start taking it now. You could always call your onc if you are really unsure and run it by them or their nurses. I just took a week off to go on vacation and it was with the blessing of my onc. Good luck to you!!
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Hi Cynthia,
I am on day 7 and have had no SE's yet. I'm taking 2000mg twice a day but I'm 5'9" and weigh almost twice as much as you. This drug us suppose to be accumulative so you could probably start now and be OK. However, you never know how your body is going to react. If it's important to you, a couple of days may not matter. Hope you sail through this medication like some others do.
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The only immediate SE I had was swelling ankle and foot. My sneakers opened enough to get a shoe on. I haven't had the HFS yet. Bowels were manageable. My appetite did flatten so if eating lovely meals on your trip is important you might want to wait.
That said, waiting a couple days to start shouldn't be that big a deal.0 -
Thanks for sharing your experiences. Part of me says to just go for it and the other part says to wait. I swear this is the story of my life. lol It's already been 2 weeks since my onc wrote the rx so I really should start (stupid insurance issues caused the delay). And, since the pain I'm already in is impacting my days, the Xeloda may help with that.
I'm wondering if anyone knows about how long it takes for Xeloda to work (if it's going to, of course)? I can't find any info about that.
And, how much of a meal does one need to eat before taking it? I'm not crazy about eating breakfast, so this is going to be challenging. Is a snack enough? What works for you?
The pharmacist finally called me, but by then I figured he wasn't calling so I couldn't find my list of questions. He did say that it's important to strive for 12 hours between doses. He says it really helps with the side effects to keep the level of medication consistent. But, I so suck at eating at regular times. It was all I could do to get 4 doses of Megace in a day and the spacing was not ideal. I plan to set alarms to remind me, but if I don't have to eat a full meal, it'll be so much easier.
Thanks everyone!
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I'm on day 7 and also don't normally do breakfast. I've just been having a piece of toast with peanutbutter or a banana so far and I've been fine.
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Thanks, Frapp. That is great to know...I can definitely do that.
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Cynthia: I asked my onc how much I needed to eat when I first started taking these, and he said just eat something - do NOT take it on an empty stomach. I usually have a small muffin and a banana for breakfast. As for timing, I don't sweat that too much, I just take them with breakfast and dinner -- I doubt they are ever exactly 12 hours apart. I think it's important to just get them in and not worry so much about being precise....just my 2 cents.
As for how long it takes to work, I suppose that varies, but I can tell you my experience....we scanned after about 2 months and it was working then!
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I take mine at 8am and 8 pm. I eat dinner about 7 and don't bother with anything else before the 8pm dose. I ate early yesterday, about 5:00 so I had a couple crackers with peanutbutter just to be on the safe side.
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I found a pudding cup was enough for the evening dose. I'm a late sleeper getting up between 8&9. So I needed something small for taking those pills that late at night. My first 2 month scan was Friday and it's working. First thing that's worked in over a year.
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it really amazes me...the variation of dosage, and length of the cycle in doctors through out the country.....my doctor is at univ. of penn. and pretty well known and he told me that the problem with xeloda is that doctors are giving out dosagees that are too high....i mean....who do you believe???
my first week with xeloda when i took half of what he had prescribed just because i have such sensitive drug reactions i ended up gaining 6 pounds in one day...my hands and feet were so swollen i ended up at the cardiologist and he looked at me....looked xeloda up on his special doctor drug website and it shows cardiology edema in 7 to 15% of the population....i had no idea!
i started my 2nd xeloda week 2 days ago (7/7) and i am at full dose (2000mg)....my biggest issue is my stomach....knocking on wood when i say this but i haven't had bad diarrhea but the gas....oh my god the gas......has anyone had this problem and found a solution?
i have to look up the sir sphere treatment....
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You might want to see a Gastro doc. I was already taking Aciphex for GERD before my diagnosis. Several of these meds aggravate belching and gas. So I was told to double up on the Aciphex. And I have a standby ulcer med sucralafate (sp?). It coats the stomach lining. Oddly the GERD tends to ramp up on my off week.
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So glad to hear its working for you chickadee ! I hope I have the same results.
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Tell you the truth Frapp, I was almost convinced I wasn't going to get good news. I was doing one of those "if the SEs aren't awful it probably isn't working" panics. I went in prepared to talk about where to go next.
Even my husband was visibly relieved when she said it was good news. I think he gasped a little.
I want you to have the same surprise in two months.0 -
I'm so relieved that a snack or small meal will be enough. That will make taking it regularly so much easier.
Chickadee - I'm so glad it's working for you! Yea!!
Frapp & saltair - I hope we all get good results, too. It's going to be a long couple of months, I think.
I told my hubby that I was thinking of starting it tomorrow and he suggested I wait until Friday because it's the first of the month and it'll be easy to remember. I think I might do that.
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I take mine with a lil food but the timing varies. It's never 12 hrs apart. Just whatever time I eat breakfast I take the pills and the same thing for dinner. I started out on 7 pills (3500mg)a day but that was too much for me, SE were horrible so ONC reduced dose to (2500 mg) 14/7 schedule and I feel much better but I'm also doing taxotere with X
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When I first started Xeloda I couldn't eat much so I would start with a crispbread and peanut butter or Dairylea spreading cheese. Just enough with a cup of tea and then half an hour later I took my pills. I don't think you need to eat a lot, just something to line the stomach. I'm on my fifth 14/7 cycle now and I can't tell any difference between the on/off weeks. My fingernails are more brittle and the skin on my hands and feet is noticeably dryer but I very rarely put cream on, only when I think about it, more as a pampering than a necessity. I have not had clear feedback on whether it is working yet but feel fine.
Barbara
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