All about Xeloda
Comments
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JFL,
Let me know how the Excipial works for you. I bought it at CVS also, but at the time, my hands were so damaged and raw that I could not tell if it was helping or hurting, so I'm waiting to try it out again. I only used it for a little while because then my doctor suggested an extra seven days off to let my hands heal up. Those extra seven days made such a difference! It was great! I hope the Excipial works well for you! I'll start using it again when I start my next cycle. For now Bag Balm has been most helpful with keeping my hands and feel well moisturized.
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Good morning ladies!
Sandi, I can understand wanting to quit X due to feet on fire. I don't have too much trouble with my feet, more so my hands. Need to get me some soft cotton gloves. I picked up some winter gloves, that you can text with. But I didn't know that at the time. First finger and thumb were gray, the rest of the gloves were tan!
Babs, I'm like the Vicks too. I have some of the Udderly Smooth with urea, but it really didn't help much.
Winning, glad you don't have HFS. It could be the low dose, as you have been on it for a little bit. Does your onc plan on increasing your dose?
I off for labs this morning. Hate the anxiety of getting the results. Which is why I refuse to do them every 3 weeks. I do every 6 weeks. I'm leaving Tuesday to head to MI to visit my family. Not sure if I'll check my results before I go or not. I see my onc on the day I return.
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Babs, curious as to which Skechers has helped your feet? My mom is a nurse and has reduced her schedule to 2 days per week - she plans and hopes to continue working through the Xeloda treatment although she is on her feet alot throughout the day.
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Daughter, I have Sketchers with memory foam. They are very soft.
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Daughter- I also have the skechers with memory foam-I just wish they came in 1/2 sizes. Mine are too big and the next size down is too small so I wear them with very heavy sox.
Babs
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I'm going to get some Vicks to try next time I'm near CVS. I remember my mom putting it on my throat when I had a cough/cold as a young child, and then she wrapped a sock around my neck. :-) A method used by my grandma I think. The menthol cleared the sinuses.
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I have several pairs of Skechers GoWalks-- they are slip-ons with memory foam insoles. They are the best shoes I've found for my Xeloda feet. I have also found Skechers lace-up sneakers to be easier on my feet than other brands of sneakers (Nike, etc).
I also wear Converse high tops (Chuck Taylors) regularly. I feel cuter and more stylish in them, but I can't wear them for as many hours as I can the Skechers.
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Hi Ladies- has anyone experienced severe dizziness on Xeloda? Thanks for your wisdom
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ok- my GoWalks came today (Amazon Prime) and I'm wearing them now. :-) They are very soft and comfy on my feet. They actually feel better than my slippers!
Milo- I can't say I've ever had dizziness on Xeloda. Make sure you are hydrated. That, alone, has caused dizziness for me. It's because I have low blood pressure, so anything, like alcohol or heat or dehydration, can cause me to be dizzy to the point of passing out. Good luck!
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Sandi, glad you like your new shoes!
No dizziness for me either Milo. Hope you can figure it out. Make sure to mention it to your doctor.
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thanks all for the sketches recommendations
If they can't cure this cancer yet, the very least is to find a cure for this HFS. That seems easy enough.
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DaughterLove15,
I recommend this article to understand more about HFS http://www.appliedcr.org.br/artigoPreloVisualizar....
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Oh I'm so so sore with stomach cramps and the trots! I'm on my second cycle of Xeloda and I'm on my pill free week. My first cycle was fine with slightly red toes and a bit of cramps and diarrhoea at the start of my pill free week but that only lasted a day. This cycle I have had severe stomach cramps, a couple of mouth sores, headaches and extremely sore feet more or less the entire time I was taking pills. I was so looking forward to my pill free week but the stomach and diarrhoea are unabated even with Loperamide. The pain just now is so bad I'm beginning to think there's something else wrong! At least the headache, sore feet and mouth sores are gone! My feet were so bad, I couldn't bear to stand in the shower for very long at all as the stinging was so intense and I would wake in the night and do my creaming ritual yet again! I am on 2300 msg twice a day, two weeks on and one week off. I go to the oncology on Thursday but am so worried about asking for a reduction in dose in case it reduces the effectiveness and I get progression . My last scan was really bad - multiple liver mets, lower lobe of my left lung affected and pleural effusion and thickening was back. At the end of my first cycle I really felt like the drug was working so I am scared to get a reduction. All I can think of is that there must be a reason why this is the best dose for me and I would be silly to change it. Some advice please. I feel that I am never done complaining. When I finally depart this world, those that are left will never be able to say "She fought cancer and never complained"!!
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Lovestosing- Talk to you doctor. Living in the kind of state you are in isn't living. I had to ask for a reduction in my first dose. I too was afraid as I had liver and brain mets. But I am still here over 3 years later and doing well. A slight reduction can make a huge difference in my case. I know so many people who have had to reduce the dosage and have done well. I almost think it is expected. Please talk with you doctor and don't wait until Thursday. I hope you find some comfort soon
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Lovetosing, 2300 twice a day... on a 14/7 schedule? No wonder you are having so many troubles.
For comparison, I take 1500 twice a day, on a 7/7 schedule. This is a research-based, clinical dose (my onc sticks strictly to the literature and current studies). Maybe your onc wanted to hit your mets with an initial shock-and-awe attack. There are circumstances where variations are called for. But you are definitely not silly to change it if it's not allowing you to live your life-- after all, that is why we take treatment, so we can live our lives.
I and many others have had excellent response to a lesser regimen than you are on. I've been NED for 2.5 years on my current Xeloda regimen, even though I was well on my way to heaven when I started on it.
Never be afraid to advocate for yourself! Ask for a dose reduction if that's what you need.
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Isn't the starting dose for Xeloda based on weight? I vaguely remember that from my initial paperwork, but I could not remember correctly. I have been wildly distracted lately. I am on 1500mg/twice per days, 14/7. My oncologist is willing to talk about reduction after the first six months.
*susan*
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Susan_02143,
The dose is based on skin surface; that is calculated based on height and weight together. See this post for the links that calculate a patient dosage. I agree with lulubee that 2300 mg x 2/day seems incorrect.
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thanks everyone for your replies. You've all given me courage to seek a reduction in my dose. I was told that the dose is based on your surface area. I am 5 ft 4 with a medium frame - don't know my weight - probably around 11-12 stone. I used to be lighter but last year's FEC/T with steroids piled the weight on. I was just starting to get the weight off with swimming but now I can't do that due to risk of infection. I have been going to the gym at the weekend and doing some walking on the treadmill but had to stop when the feet got red and sore. I know exercise does help with fatigue and I want to keep my weight down but this drug is not helping me do this at the moment and my weight will only pile on. Hope when the weight goes on, they don't want to increase the dose!!
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Love to sing. Your dose sounds very high. 4600 per day!!!
I am 5'10" with a slight frame. My mo started me at 2000 2x daily for a total of 4000 per day. 7 on 7 off. Due to my HFS she suggested I change to 1500 in the am and 2000 at night. Thus far I only did that the last 2 days of my last cycle. Since it's working I want to try to stay at the max as long as I can. Def speak to your MO
Babs
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Lovestosing,
Based on your height 5'4" and weight 160 lb, the dosage calculator (1250 mg/sq.m. for Capecitabine), gives a result of approximately 2300 mg/day. However, you wrote 2300 twice a day. Are you sure there isn't a misunderstanding with the doctor? I remember somebody else in this forum had the same misunderstanding with the doctor, confusing the total daily dose with the twice-a-day number.
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Hi
Thanks everyone for your continued supportive replies. Here in the UK the tablets are in two sizes, 500 mgs and 150 mgs. Is that the same in USA? I am taking 4 of the 500 mgs and 2 of the 150 mgs tablets twice a day! It seems like a lot compared to you guys! I'm at oncology tomorrow morning and will report back
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thanks everyone! I was dehydrated and my blood pressure was low. It is so difficult to know when to tie normal life side effects to cancer related side effects
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Dear goldie,
In answer to your question about my low daily dosage (2000 mg a day), my first scan showed improvement in my one met and nothing new showing up. Coincidentally, I've had to change oncologists and so far she hasn't mentioned changing my dosage. Next time I see her, I'll quiz her on her philosophy. I think my original oncologist had read that a low dosage could be effective, and I do seem to have an indolent cancer (so far anyway).
I'm thankful to avoid the side effects that so many of you have. Other than me, is there anyone else who does NOT have HFS?
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Lovetosing, I agree with GCiriani, sounds like a good idea to confirm the intended dosage with your doctor. I had confusion when I started two weeks ago. I received a temporary 4-6 day prescription to get me started that said something different than the doctor told my husband. A few days later, I received a full month prescription that said a different dose. I had to email the doctor to confirm. Then, I misread his email and thought he confirmed the opposite dose that he did. For some reason, there seems to be a lot of confusion around dosages among all parties involved - doctors, nurses writing the prescriptions for the doctors, the pharmacists, patients, etc. I think it is because not only is it taken multiple times a day, but involves multiple pills per dose and everyone describes it differently (daily total mg v. individual dose total mg). A lot of balls in the air.
I am on 3,000 per day (1,500 / 2 x per day) 14 days on / 7 off. Finish my first course tomorrow. So far, so good. Mild HFS and some loose stools. Nothing problematic. Only frustrating symptom at this point is red, puffy eyes and runny nose - allergy-type symptoms. Is this common? Someone at work made a comment that I looked really sad or down lately. I think it is because my eyes look like I have been crying all day.
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Winningsofar, I also do not have HFS. I had a flare of tender, burning feet during a cycle a couple of years ago, and took a one-week break that cleared it up. I feel very fortunate. I do take many precautions and have from the start, which I've written about in earlier posts on this thread. My onc thinks it's largely a matter of individual biology and how we metabolize things. Who knows?
JFL, I have bouts with puffy, teary eyes and drippy nose. Sometimes I feel like even my ears are wetter than usual! Weird but true. It comes and goes.
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As I start cycle 5 of Xeloda, this seems like a good time to catalog the effects that this drug is having on my body. This is a lighthearted list; but they are real.
thinning hair. oh, and yea, it is suddenly straight! Susan with straight hair is just comical. I started with ringlets. Uncontrolled ringlets, but ringlets none the less. GI stuff. Okay this is a real one. I spend a fair amount of energy trying to control my GI system. Going from explosive diarrhea to constipated, heck having both issues at once, is a challenge. Soup is my friend. This is expensive. Toilet paper consumption has gone way up! HFS. Yup. Check. how do I know this is real? My iPhone no longer recognizes my thumbprint. Why? It doesn't exist anymore. The splits and cuts are another annoyance, but having to use other fingers to get to my iMessages is a huge annoyance. HFS. The feet. I like my feet. I use them to walk. My mother has spent a fortune to buy me a bunch of LLBean, hiker-friendly, no seam socks, and they help so much! This added to the bag balm, and I had a better month. Thyroid. Killing my numbers. I am now prepared to beg for my Synthroid to get me back to normal. I am sitting in the hypo range, and it is killing me! Cold and lethargic is a pretty good description of my current life. My Endo is out of the country until Wednesday, and then I will commence begging. Vitamin D. How did an 8 happen? Oh yea, dairy is not my friend on this drug. My normal routine of eating cottage cheese to keep those Vit D numbers up is no longer an option. Sorry medical folks.... cottage cheese and explosive diarrhea just don't like each other. So, next beg, a VitD pill to try to get these numbers back up. Cough. What is up with this cough and post-nasal drip? And the sneezing. I am suddenly allergic to so much airborne stuff. Define increase in Kleenex purchasing. Breakfast. Yea, I know. Breakfast is the most important meal of the day, that I haven't eaten for 50+ years. I am finding breakfast strategies but they take some effort. The hardest part? I am now finding that my body wants breakfast on the off week. My body is playing the "traitor" role. Funny how much I less I eat at dinner now that there are two meals in my life earlier in the day. But, the silver lining is I have reactivated my Rye starter, and now make rye breads to provide the aforementioned breakfast. No one else in this family likes rye bread, so I always know exactly how much I have. Fatigue. I now believe that a nap is my daily right, but it can rarely happen. Even when I have the time, my body often doesn't want to actually sleep. On those wonderful days when it does, I sleep like a baby for an hour. Those days are good days. Towels. The extra cost of toilet paper might be offset by the reduction in towel usage. I am washing my hands much less frequently, one of the suggestions made by my doctor about HFS. Less laundry, and fewer paper towels in the kitchen.Silly stuff. Daily accommodations that allow me to keep working full-time while managing a few huge extra projects.
*susan*
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Susan, that was gold. A few responses...
- Thumbprint: Yes, mine is gone, too. Forget that fancy iPhone log-in stuff. But hey, maybe we can now rob banks or something, right?
- Vit
I was also an 8 at diagnosis. Scary, right? My ND told me not to expect dairy products to affect my D levels significantly, and I've read that elsewhere as well. So my onc kind of freaked over my paltry little 8 and gave me the standard megadose D script to raise my levels fast, but I was made to understand that the prescription form, which is D2, is used to bring about a quick fix but it's also kind of a fake fix. Meaning it won't hold for long without followup with D3. It is longer term supplementation with D3 that soaks in deep, so to speak, and *truly* raises the D levels effectively. D3 is not expensive OTC. I took 5000 units of D3 daily for 2-3 years, and my levels came up into a solid range. I now take a supplement called Inflamma-less every single day (helps me profoundly with ALL of my side-effect complaints) which contains fish oil, which helps maintain good D levels. I also drink a superfood potion almost every morning (Green Vibrance powder, a food-based supplement that provides "every known nutrient" including 1000 mg of food-based D, and makes me feel Oh So Much Better that I am kind of addicted to it). I still take a D3 soft gel about twice a week just to make sure I'm covered. Oh, and... I could not believe how much better I felt after every dose of that script D2. It was a revelation. I will never slack on D3 again! I hope it does the same for you!! - Hand washing: I just can't stop. I might be Lady MacBeth. Here's my workaround. I keep a bar of Greek olive oil soap at every sink. It has two ingredients: olive oil and sea salt, so it's very gentle. I also keep a pump bottle of fractionated coconut oil at my vanity sink (it's the kind that stays liquid, has no coconut smell, and doesn't stain clothes). I squirt a few drops of that into the suds on my hands, and then rinse. Origins High Elevation All-Purpose Cream is great for my hands-- formulated specifically for customers in the Rockies. Also love Weleda Skin Food cream in a tube for nighttime-- it's too thick for daytime. Kind of pricy but awesome, and you use so little that a tube will last a good while.
- Breakfast: I feel your pain. All I want during chemo week is pastry pastry pastry. Chocolate croissants. Krispy Kreme chocolate glazed donuts. Which is crazy because I do NOT eat that way as a rule. I don't love bananas, but I will keep some around during chemo week because it's at least something I can grab with no effort. That, a handful of walnuts or a spoon of almond butter, maybe a shot of Green Vibrance potion in 8 oz of water, and two cups of black coffee, and I can get my dose down. And then forget about food for a while, which is nice. Haha.
- Toilet paper: baby wipes. That is all. LOL.
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Hi Guys! Good day at the Oncology shop!😀. They're dropping my dose to 2000 msg twice a day! I was told that I am on a larger dose than what other people are on but I didn't really get to the bottom of why this is. There is no permanent oncologist where I live (although I believe there will be one appointed soon) and I saw a different oncologist from the ones I've seen before. It's not like the U.S.where you buy insurance and can choose your oncologist - I'm in a state funded facility where I don't have a choice about who I see. Having said that, they quickly recognised that the drug is having an impact on my life and that something needed to be done. They said lets see how you do on the reduced dose and then we could reduce further if necessary. Taken the first dose tonight and so far so good, no headache, no trots to the ladies room - let's hope it lasts!
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Lovetosing, glad you received some answers and can lower your dose.
Does anyone know of a urea cream without parabens? I use the normal daily and night Excipial creams without urea. I noticed Excipial has stronger formulas with 10% and 20% urea. However, I haven't used these because they contain parabens, while their other lotions do not. Today, my doctor gave me a sample of Udder Cream with 20% urea, which he said the drug manufacturer recommends. I was disappointed to see the Udder Cream with urea also contains parabens.
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I avoid the ones you mention because of parabens, as well. I looked a good while, and I did finally find one: Eucerin Intensive Repair Foot Creme. I do not know the percentage of Urea, but it is the third ingredient after water and glycerin. I like it. Found it at CVS.
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