All about Xeloda
Comments
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Has anyone been told to not touch the Xeloda pills? To pour one in a paper cup (like when you're in the hospital) and take from the cup? That is what my np told me last week, but the clinical trial nurse didn't know anything about it. Anyone??
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The pharmacy coordinator that calls me once a month told me to wash my hands immediately after handling the pills and to not let others handle them - but nothing about not touching them myself. I haven't actually washed my hands afterwards - it seemed a little overly cautious and I figure if I'm swallowing them for goodness sake how badly could I be harmed by touching them?
Amy
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I've been taking X for 9 months and I've never heard of that. Interesting. Don't think I'll wash hands either...I'm swallowing them for pete's sake.
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ok. Thanks!
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I haven't been told not to touch them.
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Well had my scan results today and found out Xeloda has totally failed me. I only had 2 cycles of it, but have major bone progression and a couple of small spots on the liver. Onc wants to do another biopsy since the first one I had was incomplete due to a poor sample. After those results are discussed i'll be put on some sort of IV chemo. It's been great reading all your posts and getting to know you all a bit. I don't post much myself, but read everything. Good luck and hugs to you guys!
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Proparent, I read that two cycles often is not enough time for good results - has your onc said you are to stop and move to IV chemo?
Sorry to hear your results but gosh, it just seems too early.
Amy
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Proparent, I concur with Amy. I was told it takes 3 to 6 months for X to really kick in. I also had some considerable bone progression after my 1st follow up scan, but my onc said that was to be expected. After the 2nd follow up scan, I was mostly stable, and a couple of lymph nodes had even shrank.
Two cycles sounds like only about 6 wks if you were on a 14 on 7 off regimen. Might be worth looking into.
Best wishes on your new TX.
Lita
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Kaption i didn't know it could be that simple, why on earth would NP not tell her that?? So she could have a pickle and that's it? Potato chips, you kidding she lives on that! Thx.
Proparent I really don't know of your details, but why would she think Xeloda is the problem and not Ibr/Fasl? It's just Xeloda holds promise for ppl with liver mets, of course you will always see those women that do not respond to it, I'm not even sure how good it is for my DD, but...good luck.
Appointment tom with Radiologist to see what can be done for the numbness in the arm.
GN everyone
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I also found I needed salt on Xeloda. Just felt better. I salted pretty liberally and my labs never went overboard for salt.
I was told to wash hands after dosing, and I also read somewhere (the drug information sheet? I don't recall) that the patient's underwear should be washed on hot, separate from kitchen linens. I do a separate load once a week for my washcloths, towels, and panties now-- even now that I'm on a different treatment. It just makes sense to me that we are releasing toxins that should stay separate from family wash if possible. If you can't handle an additional load of laundry, I would suggest a sanitary hot cycle with a vinegar rinse.
It's always something, right??
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lulubee,
Very interesting suggestion regarding laundry. Just goes to show that we're all given different information as I never heard or read this. It does make sense.
Amy
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Lulubee that is so interesting? Thinking of my DD with the kids, she will freak out if she will think she could have been doing some damage to them by sharing the wash!
And so intersting about the salt/Xeloda, let's see maybe by Friday we'll have this weeks BT.
Her H/F are a real issue now, she is embarrassed to be seen. So it goes.
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I think if you wash all your clothes in HOT water and put them in the dryer, you shouldn't have to worry about contamination from the pills.
Gees, before you know it, we'll all turn into that obsessive compulsive Detective Adrian Monk from the TV series 😣.
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I'm recently diagnosed TNBC mets to iliac and sacrum. Just finished 25 rads and started Xgeva in Dec. Will start Xeloda within the next 3 wks, 7 days on/7 days off, 3000mg/day for 24 weeks. I'm stalking this thread for tips, etc. Wish I didn't need to be here, but am so grateful this thread exists! It's encouraging to read that SEs may not be quite as severe on the 7/7 schedule
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Believe, get some good hand creams (NOT lotions) and some cotton gloves. Hopefully on a 7/7 schedule you won't lose your toenails like I have. Use cream on your feet, too. The digestive issues aren't as bad on 7/7 either. You may have some fatigue, however.
Lita
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Here I go! This evening I start my Xeloda. I'm in the "experimental" group- taking 1500 mg twice a day, 7 days on, 7 days off.
Hoping for good results and minimal se, of course. I have failed herceptin/perjetta (was HER2 positive), then failed Ibrance, then failed Faslodex-all within 3 years.
This stuff better work for a while.
Your tips have all been very helpful. Thank you!
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Good luck Believe51 and Kaption, hope Xeloda is very, very good to you!
I'm on the 1500 twice a day 7 on 7 off and have been since December 2015. The only real side effect I have is cracking dry fingers and callusy feet, but with urea cream and Aquaphor it's livable. Plus I just got more scan results and I'm still stable, so I get to stay on this stuff a little longer--yay!
And Kaption, I'd also failed a string of things since my stage IV dx in 2014 including Faslodex (did well for a while on that one before it gave out) and Ibrance plus a couple others, but those drugs are so different I don't think it really predicts how Xeloda will be for you so take heart!
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Thanks, Roses! I'm hopeful (cautiously)
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Lita - Thanks for the recommendations! I have a box of white cotton gloves and some white cotton socks ready. Dermatologist prescribed flucocinonide and I already use Cetaphil cream but know my medicine chest will look like a mini CVS by the time we figure out what works for HFS
Thanks for the encouraging words, Roses! I'm hoping my hands and fingers are at least good enough to help take care of my DDs twins who are due in July.
Good luck, Kaption! Please keep us updated on how you do with Xeloda.
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To all the new Xeloda ladies, I wish you a long period of time with minimal side-effects and a long long time with zero progression. I'm on my third round of X and have had to drop my dosage from 4,000 mg to 3,000 due to hand/foot pain, seriously felt like I was walking on hot coals.
My first scan will be in March to find out if it's working.
Good luck to you all. Actually it's not luck, I seriously believe in prayer and that's what I've been doing...praying for us all on these boards.
Amy
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My MIL is about to start xeloda. Is there anyone with brain mets that had success with xeloda?
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Dear cliffygrl76,
We welcome you to the community and are glad that you reached out here. Here is some information about brain mets and xeloda for you you to read from our main site. Please stay connected here and keep us posted. The Mods
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cliffygrl76- I have had great results with brain mets and xeloda. I had gamma knife to my two tumors and then started on Xeloda. I have been NED in my brain ever sense. It has been 4 years. At first I was on Xeloda and Tykerb, as i am Her2+, but that was discontinued after a solitary tumor showed up in my liver. I have been on just Xeloda since March of 2016 and am still stable.
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How large does the "meal" you eat before the Xeloda pills need to be?
My evening meal is usually a bit too early for my last dose of the day. Can just a piece of bread with peanut butter do? My np says I can have the pills 8 hours a part. But, if my breakfast one is about 7:30, I'd kind of want the evening one no earlier than 5:30.
What schedules do you all follow?
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My doses are about 9 hrs apart. I suppose you could take the pills with some bread and peanut butter because it has some fat and protein in it so it will sit in your stomach for a while as the pills dissolve.
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I've had a conversation w/new onc, nurse in charge of explaining Xeloda & the nurse from the compounding pharm, The one question I ask was about the timing of taking pill.....All said they preferred 10 hrs apart but realize not always poss. but Pills should be taken with in 30 min if you want to take after last mouthful of food good If past 30 min (sure 32 minutes would be ok) should take more & adequate food w/protein as more time passes. Waiting too long & the stomach may be empty enough to be nauseated. But don't wait too long after pill due ie 12 hr. limit as then you could be taking the X to close together. You can fast for all I care.. rgc77 Example of oatmeal or cereal not good enough to keep nausea away. Should include protein ie eggs not just a sip of milk. No problem w oatmeal just saying protein helps stomach. I do take notes & was given handouts so I don't think I have the terminology & info wrong Take the info or leave it just putting it out there if interested. washing laundry. the laundry issue isn't mine someone brought is up because some were concerned. These are 3 professionals that had the same view of X. Professionals aren't always right but usually a few steps ahead of amateurs. You don't have to try to correct me because you don't like what I posted Ill give you the names of the individuals & you can argue with them Yes we had correct diet infor when I was young & I spent over 30 yrs working for a pharmacy. Last post for me. done not going to argue over everything. Not all foods can be taken with chemos ie grapefruit
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I suspect that what foods work with Xeloda is fairly individual. I often eat oatmeal for breakfast and have no problem with it. I find that it has more to do with quantity for me. I don't wait the 30 minutes. When I did, I got very nauseous. Now I take it immediately after the end of the meal and it goes better. My meals do end up being about 11 hours apart, because breakfast is at 6:30-6:45 am, and supper runs from 5:00-6:30 pm, depending on the day.
I think I'd experiment and find something that works. How else will you know?
I got a whole list of things to do and not do. Take it 30 minutes after with whole glass of water. (That defies everything I was ever taught about not drinking water for a while after eating in various health and nutrition classes.) Keep all your laundry separate. I never did that when I went through chemo before. No one was ever harmed by it, so I really can't see the point. The list seemed to forget that we are ordinary people with ordinary family members who may have to take over some of the responsibilities that Mom carried before. It all comes down to a balancing act.
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I get around the laundry issue by wearing a mini pad. I've developed some leakage issues as I've gotten older, so I just throw the little pads away, ergo no contamination.
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I agree with rgc, tolerance is different for each person. I have a pretty strong stomach and haven't had an issue with nausea or diarrhea (maybea few times over the span of 11 months). I aim to take Xeloda 10 hours apart and try to take it after my meal. However, sometimes I forget to take it with breakfast and end up taking it with lunch or afternoon snack, especially when work is hectic. I usually take it with yogurt, flax seed and a banana for breakfast but sometimes take it with oatmeal and fruit with no problems. On occasion, I have also taken it an hour or two after I eat if I still feel somewhat full from my last meal. I know this is not ideal and do try to minimize these instances, but it has never caused any side effects or toxicity issues for me. We are all so different. My hand foot syndrome and my red, puffy, irritated eyes, on the other hand, are a different story!
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FYI
flaxseed is a complete protein source. one reason why makes a great addition for vegetarians.
taking chemo defies a lot of health classes info. like don't eat poison. What you don't seem to understand is that I don't care what you do. but you are giving amateur advice to many new patient who may think you are a god & follow it w/bad results. I'm telling what onc, onc nurses etc recommend. You might also consider that if someone follows your personal advice you could be sued if things go south for them let alone the drug manufacturer may come after you with a big stick for misrepresenting their drug. take all your pills at once. take them with 6 beers. the info I posted is for those who are interested in what professionals say. You might ask yourselves new people if you were going to the chemo clinic would you tell them what time you are going to take chemo & in what combinations? Just because your at home doesn't mean that regulation doesn't matter. Just drop the subject because I no longer give a damn what you all do.
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