All about Xeloda
Comments
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I note that both Oil of oregano and xeloda are strong inhibitors of the Cyp2c9 enzyme. This should be a strong caution against combining the two substances. Nothing to say its even safe to alternate them, as my wife has.
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Timothy, where do you get the empty capsules? On line or walk-in store?
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Bought the emply gel capsules at a local health food chain here called Vitahealth. Cheap for a bag of 1000. I think around 6 dollars. We were going to use them to encapsulate curcumin & pepper at one time, did that a little, but we put that venture on hold and instead went with theracurmin, which has superior absorption. Once again, not used while on chemo for fear of interaction. The only thing my wife takes while on xeloda is metformin, vitamin c, d and mushroom extracts to boost her neutrophil counts. She was taking melatonin, but she worries it interfered with her sleep.
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Timothy, I had a session with my reiki/intuitive healer this morning and out of the blue she suggested I start using oil of oregano! I always take it when I feel a cold coming on and it's been effective for that. I keep it in my list of medicines in my records in case I ever need it. Your wife's experience is great validation! I take the curcumin during my xeloda days but not as much as my off days. So amazing about her markers!
Do any of youhave any issues with too much sun or heat? Now that we are having hot days I feel like I completely wilt if I get hot.
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Deanna, just my onc's idea. She has another patient who had success with the combo. I don't know how she worked her magic on my insurance company but she did. Though the Afinitor is on a three month trial so she'll have to work more magic soon! I hope your head pounding has let up
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Timothy and Winning...great to hear positive news from both of you😄 I am planning to do some reading on the Oregano...I tend to avoid supplements on my 2 weeks taking Xeloda...cycle 15 starts on Friday
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Do any of you take supplements like Vit D, calcium or multivitamins while you're on Xeloda? Thanks in advance for any advice.
Marti
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I always take vitamins C, D3, and B12, a multivitamin, biotin. MO is fine with those.
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I was told D3 helps to minimize hand foot symptoms.
Has anyone changed their dosage from two weeks on, one off to one on and one off? I'm thinking of asking my onc to make this change but would like to know how others are doing with this arrangement.
Thank you
Amy
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My wife takes basic vitamins while on xeloda. Xeloda is an antimetabolite. That means its blocks an enzyme necessary for the production of a component in DNA, killing the rapidly dividing cells that need that component. For that reason, I don't believe the extreme caution against antioxidant vitamins as applies to some chemotherapies or radiation therapy is warranted. No one can be certain though, but my thought is keeping my wife healthy is a number one concern.
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Hi all, I am new to this X thread and actually have not started a round yet as I'm doing several weeks of radiation. I had great success of Faslodex for 5 years and then had bone progression so started Ibrance and Letrazole Dec 1st with no success and extensive bone progression in just 4 months.
I have a few questions for those of you who have been doing this X treatment for a while; 1. Does exercise in the water like walking and/or water aerobics increase the risk of or symptoms of HFS? 2. Do any of you continue to have manicures or pedicures?
I should be starting on the Xeloda in mid April and I'm so glad you are all here to guide me through this new scary treatment!
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Amy, I'm one wk on and one wk off, and doing fine. Diarrhea went away and hfs is more tolerable.
Susan R, some of us lose our toenails because of hfs, so I really can't recommend pedicures. I'd ask Dr about water exercise...I don't have experience with that while on X.
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AmyQ, I went down to one week on/one off about two months ago or thereabouts. My HFS and eye redness/sensitivity seem to be improving. Still there but more tolerable. And, in my bloodwork, my tumor markers, liver enzymes and alkaline phosphatase have all gone down/improved despite the milder dose.
SusanR, the pressure/weight bearing shouldn't be an issue with water exercise. I know from experience that sometimes the bottom of the pool and areas surrounding the pool, if it is made out of that gritty-type cement, may be uncomfortable due to friction. If you can wear some sort of water shoes, that helps. I have done that on vacation. However, if you have a smooth-bottomed pool (such as ceramic tiles), you should be fine. I run outside (on a cement path) as much as I did before Xeloda with no issues. I have had manis and pedis but not in a long time because my hands and feet just look too heinous to expose to anyone. I do my own nails and toenails at home now. If you do get a mani/pedi, just request they use cold/cool water in the soak and no exfoliation. And try to time it when your hands/feet are in the best shape, as there is a cycle for HFS where HFS gets worse, then improves with each round of treatment.
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SusanR I was told water like in hot tubs is to be avoided until you know for certain you will not be affected by hand foot syndrome. Although I am suffering from it, the reduction in my dose has helped significantly. At my last Onc appointment she suggested i get back to enjoying my hot tub on a sporatic basis, just not daily.
Good luck to you. Xeloda has worked wonders for my bone and liver mets. I'm in complete remission after four months. Amazing.
Lita, I'm happy to hear your symptoms of HFS and your eye irritation have improved with a 7 on 7 off. I might give it a try, without notifying my doctor and see how it goes.
Amy
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Lita: glad you mentioned the toenail issue...4 of mine dropped off in about a weeks time so I assumed it must be the Xeloda..do they grow back ?...fingernails look kind of bad but I guess I will just save $ on mani/pedis and new sandals for summer and buy more flowers instead!
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When did everyones Tm start dropping mine aren't they are higher then ever, but I had significant progression on AA, I have had 2 cycles on it. They are at 450, I know lots of people are higher just feeling a bit deflated.
I wasn't gonna ask and I did...my pain seems better but still worry.
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From what I have read about xeloda, you have to give it 6-12 weeks to start seeing results. I can understand your anxiety. How long is two cycles the way you are doing it? My wife only saw modest drops in the beginning. It picked up speed as treatment went on.
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im doing 2 on 1 off, so just over 1 month..Gonna relax and just go with it see him in 2 weeks...Wasn't gonna ask cause I tend to obsess...But I did now I have to deal...
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How do you remember to take your pills after eating? I so often forget, especially after dinner. If I write notes to myself, I often fail to look at the notes. What are your systems to remember?
Thanks
Amy
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Amy, I have the same problem and am thinking maybe I need to move my pill bottle from my bedside to a more visible place in the kitchen. Also, I've never been much of a breakfast eater, so literally have to force myself to eat something in order to take my a.m. dose sooner than later. So I'm also open to any tips for making the challenge of eating when you're not even hungry easier.
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Deanna,
I do keep my pill bottle and paper and a pen on the kitchen counter so I write down what time I take the pills. Got started doing that when I was on the trial, and just kept it up.
My problem is the dinner pills. I usually get up early, have a good breakfast and my pills about 6:30. But, we normally eat dinner closer to 4:00. So, I have to delay and eat dinner later. And I usually don't eat much of a dinner. It is inconvenient! I'm trying to stay as close to every 12 hours as I can.
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Deanna--I need same ideas, I have lost weight, they want me drinking boost shakes...that makes me less hungry...trying to eat..
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Thanks for the all the help with the mani/pedi and pool questions!! I guess the mani/pedis may seem trivial but I've gotten so used to getting them that I would hate to give them up!! Guess I'll just play that by ear and see how it goes. The pool is my only option for exercise and I have always worn water shoes because I have neuropathy, I just hope the chemicals in the water won't be an issue.
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Deanna,
Even keeping my pills in the kitchen, I still miss a dose at dinner.
I've never been a big breakfast eater either so somedays I will make a piece of toast and call it breakfast - I've never had tummy issues taking X even after a small breakfast.
Amy
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As I understand the meal is to help the Xeloda get into your system- not necessarily nausea. Someone on here said just a snack won't do it. But, check with your doctor.
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Susan - My MO said no more mani/pedi's although she was ok with me doing my own pedi (polish only) for vacation.
Deanna - I keep my pills on the dining room table where I eat my meals. MO said it's ok to go less than 12 hrs between pills but not less than 8 hrs. Morning meals are tough for me too so Greek yogurt is the easiest option for me. Weekends are toughest because I like to sleep in and not set an alarm, especially to take pills!
Marti
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keetmom, it is very common for tumor markers to rise for a few months on Xeloda when it is working. Something about tumor flare or a lot of dead cancer cells circulating in the blood. Mine rose for 3-4 months, all the while making my liver mets inactive. Give it a chance and wait for scan results. It is a good sign that your pain is improving.
Amy, I have alerts/reminders on my phone that go off at the scheduled Xeloda dosing times. Without this, I would be hopeless!0 -
I leave meds on kitchen table in one of those smtwthfs pill box organizers. I also write down the time I take mine in a little note book.
I rarely take mine 12 hrs apart...it's around 9 to 10 hrs.
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Amy...how long were you on Xeloda before it started working for you? Congrats by the way!!
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Bessie,
I started X mid-December, 2016 and had my first scan on March 6, 2017...so it apparently worked the first go around. I initially started on 4,000 mg a day but after a horrific case of hand/foot my onc reduced my dose to 3,000 which has been much more tolerable.
Good luck to you and thanks for the good wishes.
Amy
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