I was supposed to begin Xeloda today. For some reason, I am paranoid. First, I'm thinking my dose is too high. I weigh 168 pounds, 5’4” and my team has me scheduled to take 2000 mg twice a day. I think that’s a lot.
Anyone else similar in size to me taking this high of a dose?
Am I just paranoid. I’m scared to death about taking it. I’ve been through chemo before…really tough stuff, but I’m so worried about this one. Maybe because I’m home and there are no medical professionals here to help me if I have a severe side effect. I don’t know!! This is causing me extreme anxiety!!!
😥
Jody
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CTGirl1962
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I am replying because it has been nine hours and no one else has -- even though I have nothing to offer in terms of real info, and I find it annoying when people do that.
It is scary, usually, to start a new medication. I have been lucky so far that all my meds have been in the same class. They usually start us too high, in my opinion. On the other hand, you have a good doc and a good hospital, so they must know what they are doing. They do not calibrate these meds by weight. I am 115 pounds, and I get the same dose as everyone else. So far, it has been okay. My oncologist has reduced the dose on a couple of meds, always starting at the highest dose. Except this time: I started on a lower dose of Kisqali because of concerns about my heart. So that does mean they are paying attention.
Whenever I start something new, I try to make sure it is in the middle of the week so I can get into the doctor if something goes wrong. I would look up dosage for you but I don't have time right now. I know people have written about this, though. Take a look at all the Xeloda posts, if you haven't already. Five of them popped up at the top of my screen when I opened yours.
Tammy!! I do appreciate you!! Thank you so much for your reply!! I ended up texting with my nurse practitioner (my go between for my doctor) and turns out the dosage was good for my BSA. However, since my anxiety was through the roof, my doctor started me at a little bit lower dose. I have made it through my first day with no issues. Thank our gracious Lord!!
I did read through all the xeloda posts and I feel better. I just hope I get through all the toxicity it can cause. My young body made it through the tough chemo 14 years ago!! I hope it remembers and cooperates this time, as well!!! 🙏🏻🙏🏻🙏🏻
You are so sweet to hop on and help me feel better. I won’t forget your kindness. 🩷
Yay, you got a lower dose! It is so rare that they listen to us. And you got through your first day okay. Very good sign.
I love the nurse practitioner, well, one of the four in the practice. I can talk to her in a way I cannot talk to the oncologist. Now I will look at the Xeloda posts, too. I will be there....sooner or later.
Okay, so the thing to watch out for is hand and foot syndrome. You should probably try to ward that off. People swear by different remedies -- udder cream, stuff on Amazon, putting moisturizer on before bed and wearing gloves and socks. I think that takes a while to show up.
I actually started being very diligent about a week ago on that!! My skin is extremely dry from the Ibrance and although I was off that 5 weeks ago, it hasn’t bounced back yet. I use a moisturizer that you use after a shower when your skin is still wet and that seems to help a bit!!! I’m wearing white socks with my lotion at night for my feet. Let’s hope I continue to feel good!! Day 2, here I come!!! 🙏🏻🙏🏻🙏🏻
Thanks, again, Tammy!! You are a special lady!! 🩷🩷🩷
Hi CTGirl, I've just finished my second week of Xeloda. First up I think your dose was ok but it's great they listened to your anxiety about it and lowered it straight away. I'm currently about 114 lb, 5'2" and I was first given 1500 mg x2 daily. One week on, and one week off. It is not anywhere near as bad as the infusion chemo you had years ago (we probably had the same stuff). The only issues I've had so far have been to do with my skin, not pleasant but not intolerable.
First week on I felt a bit of vulnerability on the soles of my feet but I took care not to do as much walking as usual, iced my feet when they got warm, moisturized them as they suggest x 2 daily minimum, wear cotton socks, and supportive shoes that are not too tight. My lips on the inside got sore, then my lips, and some redness above my top lip (I don't think this is typical). I had to keep them constantly moistened with high quality lip balm, and rinsed my mouth with a bicarb/salt rinse. Later my gums also got sore spots so I switched to sensodyne toothpaste and they gave me a steroid mouth wash too (which I only used about 3 times and it got better). Week off- the inside of my nose got very sore so I bought saline gel and applied that to keep it moist. All healed up by end of week off. Doc was surprised though that my feet already showed red on the soles, but again, not typical.
She dropped me down by one pill for the second round. This time it was my hands that got sore, red and a bit swollen, and one foot. I just started my week off and hope it gets better from here, they may drop me down another pill but I don't know yet, until the week is up.
It has made my hands very tender and opening things like plastic lids is the worst. I've been applying much more moisteriser to my hands this week, and icing, which all helps. I used only shea butter to start but doc prescribed 10% urea cream so I keep mixing it up, trying to space them out, and also once a day Volatrin cream (you can search the posts here about it and it's apparent effectiveness). So I apply volatrin once a day, and try to apply both, shea butter and seperately the urea cream , twice day each. My worst foot needs it! The other is good.
Try not to worry about all, it's not so bad, but get started with the moisteriser, that's key. Keep your mouth good by brushing regularly, drink plenty of water, etc. All the best with it!
Hi!! Thank you so much!! I did start moisturizing my feet about a week ago. Hopefully, I can stave off these side effects!!! I have all the stuff I need for magic mouthwash so that’s here if I need it. I was so worried about diarrhea, but nothing!! 🙏🏻🙏🏻🙏🏻
I’m glad you got a smaller dose and are doing ok so far. I just wanted to mention that there was study that showed if you apply Voltaren cream on hands and feet from the beginning, that greatly reduces severity of HFS. Seems like it would be worth a try!
Here is a forum discussion on both dosing of Xeloda *and* using Voltaren (diclofenac) cream. These are breast oncologists from UCSF.
I've been using it once a day in the middle of the day. Oncologist suggested spacing it apart from the other moisteriser to have best effect. I wasn't sure it was doing anything to help, I mean it's not a moisturizer after all (and I think it contains some alcohol which is itself drying). Then yesterday there was a point in the day my hands and foot started to burn, I was sick of icing so I applied the voltarin, and it did definitely take the edge off the burn, and they looked slighty less red after a while. Note: volatrin contains ASAID . In the study on it they only applied a very small amount (roughly a pea size?) so you do not need much.
I’ve taken Xeloda for a year now and it’s worked well. (Ibrance and Fulvestrant failed.) My feet and hands get ugly red, but I keep them lotioned up— no cracking or bleeding. Also, no nausea, which I had on Ibrance. My hair has filled in a lot so I’m also thankful for that.
I’ve been able to travel while on Xeloda.
I take 3500 mg a day— 3 pills in the morning and 4 in the evening. I’m 5’7” and weigh 175. I do one week on/one week off to keep the hand/foot syndrome at bay. Also, folates (and folic acid) exacerbate Xeloda side effects so on my “on” weeks I try to keep my folate intake lower.
Thank you and others so much telling us about folate exacerbating hand and foot. I started taking folate pills and my hand /foot got worse. I read on this web site to stay away from folate so I dropped it and my vitamin B complex. Right away my hand/ foot became very mild!
Thank you so much!! This sounds very tolerable!! My doctor lowered my dose, but I’m two weeks on, one week off. Let’s see how I do!! I’m praying this works well for me!! 🙏🏻🙏🏻🙏🏻🩷
I've also recently started Xeloda but I had red soles and around my mouth already in the first week. They dropped the dose a pill for the 2nd round but this time my hands were the ones to get really fired up (and one foot, too sore to walk on yesterday!). I've had to get my husband to open a few things for me as my hands have been so tender. So I am curious because you've been on it so long already, do you have a period each cycle where you are like what I describe with my hands? I keep moistering them but sometimes they just BURN and I have to ice them. How does it effect your daily activities, and when you travel, are you able to walk around?
Things do ebb and flow. Often at night my feet “burn” (actually they feel a bit like that now) and I have to kick the cover off them and/or apply lotion. I know for a personal “fact” (because I’ve tested it on myself) that eating folates makes things worse— and I love beans and to snack on peanuts ☹️).
On my first Xeloda cycle, my feet didn’t crack or bleed but they hurt a LOT. That’s why my onc changed me from the 2-weeks-on, 1-week-off schedule to a week-on, week-off schedule, which has helped immensely. Mostly now I’m just used to things. I was constantly a bit nauseous on ibrance and to me that was much worse.
If I’m going to walk a lot I wear really comfy shoes and socks and lotion up often. I usually don’t walk a lot at one time.
I also have arthritis in my knees— bone-on-bone, diagnosed pre-cancer. My knees cause me most of my mobility problems. If I didn’t have cancer I’d probably opt for knee replacement surgery, but I have so many other pressing medical issues that my bad knees are off my priority list.
I went to Spain in January (solo to visit a friend) and the Madrid airport (twice, coming and going) about did my knees in. 😞 I had to baby them, rest and use my cane for a few weeks afterward to recover!
Ooh, I recall you mentioning your trip to Spain! Ouch for the knees. I have had clients with bad knees like that so I'm aware just how painful it can be. Like you I love a lot of foods with folate! And for years I've taken the same Vit B complex and only realized belatedly that it contains folate 😭, so the onc recommended stopping it. But I'm frustrated becasue I like to take the B complex because I don't eat much meat, and to help keep my nerves at optimal health (from chemo-type drugs!). I alomost feel like I will have to add more meat to my diet, eek, because everything I eat, lentils, beans, dark greens, hummus, everything I eat is high in folate!
Yes, like you I mostly eat vegan/vegatarian, except I will eat some wild caught tuna or salmon. So I. Wondering what do you eat if not eating folate rich foods.
Ah, now there’s the challenge! I’ve been contemplating trying to find a relevant dietician to guide in food choices. I’m due to restart this week. Chamisa says she tries to eat low folate on her “on week”, which is maybe one way to approach it? Folate has to be eaten every day because it is not stored in your body so perhaps that idea does help.
Hi! I’ve been on xeloda. It was by far the easiest regimen for me. Stay ahead of your hand creams because it causes some hand dryness and cracking. I was about your weight (150) when on it. I was on 1500 2x day. It’s usually based on weight and amount of cancer. I’d ask your medical team the reason behind the dosage. They can always reduce or adjust the amount for you if there are side effects that are too much for you. I hope this helps.
You’re welcome!!! I was on it for a little over 6 months post surgery. Thats good to hear they lowered your dose because I’m sure you’re feeling better about that
Much better!! Thank you!! If they feel I need more later and I’ve been tolerating it well, do be it. I just feel the least amount of toxins in my body, the better!! Hopefully I can do well on this for a very long time. 🙏🏻🙏🏻🙏🏻
my dose has been cut twice. Now I take 1500 in am and 1000 pm. One week on and one off. I feel great after a year of problems and fatigue on various meds I’m so happy with. Xeloda! I have mild hand/foot and periodic diahrea. I have energy and have returned to physical exercise. Try it!
I'm now on your current dose after 1500 x 2 proving to be too much, just in the first cycle. This 2nd cycle it's my hands mostly and one foot. Too sore to do some things or go for a walk Maybe I just have to be dropped lower again. Otherwise I feel great so it's very frustrating as I love to be active!
I don't remember how much I weighed when I was on Xeloda, but it was close to your weight and was started on the same dose. It was lowered a cxouple of times due to hand and foot ....
If you are alone at home when you start a new med, call a friend and have them on stand by to check in by phone or go to their house to begin the new med. I hope the Xeloda works well for you for a long time!
Thank you so much for your kind advice. My husband is home with me. Otherwise , I may have never started it. That was my greatest anxiety. When I went on chemo infusions 14 years ago, I was in a center with loads of healthcare personnel and I felt “safe”. This was so much different.
I’m ok now!! I hit through my first day and I’m still standing!! I feel like such a big baby. What is wrong with me???? I’ve never been so wimpy in my entire life. I was just extremely scared. I’m hoping to have a good go of this treatment for a very long time!! 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Nothing wrong with you at all! I think most of us feel the same way, scared. We are all in this together though, this site has been a Godsend for so many! The support in this group is amazing!
Hi CTGirl1962, I hope my message helps calm you a bit. Even though we all react differently to all of these medications, I, along with many other people on this site have had a relatively easy experience on Xeloda. The most common side effect is nausea and diarrhea, although, I haven't heard of anyone actually having a problem with that (not to say they are out there of course). The biggest problem I have had is hand and foot, which so easily managed with Urea creams, I use a CBD anti-inflammatory cream as well, and being mindful of wearing the right shoes, not over washing hands, etc. My only other problem and it is a rare side effect (lucky me!) is bone and joint pain. It's livable though, kind of like severe arthritis. Since Xeloda, my hair has grown in super thick and healthy, about and inch a month! I have color back on my face with no make-up, it's been nice after the endocrine therapies and targeted therapies, honestly. I am on a 7 days on 7 days off schedule. I am exactly your height and size, and I started on 3000mg/day split in 1500 a.m. and 1500 p.m. That proved to be too much so it was reduced to 1000 a.m. and 1500 p.m. and now we are looking into reducing it again to 1000 a.m. and 1000 p.m. Even with reducing the doses over the last 14 months, my markers just keeping going down, and staying down. I started with my markers at almost 600 and now they are coming up at about 10 and dropped even lower than that a couple of months ago to undetectable. I hope this gives you some hope, it's been a pretty wonderful protocol for many of us, and I'm hoping it will be for you too!!
Oh my!!! This sounds so WONDERFUL!!! How you are blessed!!! I started on a long acting oxycodone about 2 months ago because of severe bone pain (primarily in my hips) when I was still taking Ibrance and Anastrozole. It seems to be helping me greatly!! I am also able to function normally and drive my car. Perhaps you can ask your palliative care nurse about that for your pain.
I am, however, extremely constipated because of it. I was hoping the Xeloda would balance it out, but now I’m a day into it and still haven’t gone. I stopped the senna and docusate on Monday thinking I may get diarrhea, but nope! So my nurse told me to go back on the senna and docusate so I can go.
What a roller coaster ride!! Sheesh!! Well, I’m doing ok for now. I am blessed to have such a wonderful group of people to go to!! I hope I can be of some help to all of you some day. 🙏🏻🙏🏻🙏🏻🙏🏻
That's all very positive news! That's a crazy amount of hair growth! And wonderful news how low your tm dropped. I've just finished 2nd cycle (dose already lowered to 2500 daily) and all good but I showed straight away the h/f syndrome, even though I've been doing all the things to avoid it! I'm hoping I can stay on it though and find the right balance of dose, and being able to do things like go for a walk.
I weigh 206 was started on 7 pills a day till I had reaction with hand and foot stuff. Now I’m taking 6. A day for two weeks and one week off the repeat. It really has been the less problematic med I’ve taken. Everyone is different. Start on Randi’s feel bad tell the onc. I wish you well.
This could’ve been me writing this. I just started taking it on Sunday today is Thursday and so far I’m fine. I’m taking 1500 twice a day, I suspect there will be side effects but we’re tough, we can take it, but for some reason this one scared me too maybe it’s just the doctors giving us all the warnings…. Not sure, but keep us up to date! ❤️
Hi Gibby!! I was supposed to start on Sunday, too, but I didn’t have Imodium on hand. So then, I got paranoid and kept putting it off. I’ve just finished day 2. Let’s definitely keep in touch since we are both on the same schedule!! 🙏🏻🙏🏻🙏🏻
lol! I am never without Imodium. I wish I had stock in the company. Be more than happy to keep in touch, but I want you to know that I also take another medicine because I have a mutation so I have nerlynx also. which I just started also. I’ve been very concerned that with the side effects I won’t know which medicine is actually making me sick but hopefully the doctors will know.. “talk” soon…. Patty
What mutation are they treating! I have 7, but none of them have been studied long enough for any treatment. This makes me sad because I honestly feel so helpless with so few options left. I’ve only been fighting this for 2 years. I am hoping for many more years. 🙏🏻🙏🏻🙏🏻🙏🏻
I’m happy to be following your journey. 🩷🩷🩷
I wish you positive outcomes with your treatments. 🙏🏻🙏🏻🙏🏻
well they sent my biopsy to a place tempus i’m not sure I spelled that right but anyways, it’s a very expensive test. It kind of really examines the biopsies to see if there’s any trials in your area for mutations, which I have I of course, was happy that I had a mutation because that opened up a bunch of new medicine. I didn’t even ask him what kind it was. I do see him on the 27th. I’ll ask, but he said mutation was a good thing because he has other things to give me so I’m hoping that this is my treatment because I’ve been through several and I’m only on 2 1/2 years too!! I wish you well for your journey, too!!
Yes!! Having mutations that have been studied is a very good thing!! I’m hoping they find a few clinical trials for me in the future. I pray to God every day to let me keep living a good life. 🙏🏻🙏🏻🙏🏻 Have a great weekend!
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Maybe I just have to be dropped lower again. Otherwise I feel great so it's very frustrating as I love to be active!
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