All about Xeloda
Comments
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denny, thanks for the heads up about folic acid and Xeloda! I will check on it.
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DivineMrsM, great news. I hope yourechocardiogram gives you the same good news.
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Xeloda dosage is based on body surface area. Height and weight are put into a formula to calculate a person's BSA body surface area. This is the calculator I used: https://www.calculator.net/body-surface-area-calcu...
My cancer facility uses the Mosteller formula. Whatever your m2 number is, that's the number that gets multiplied by Xeloda's dosing guidelines......1250mg/m2 or 1000mg/m2.
The FDA recently updated the prescribing information for Xeloda.
Source: https://www.empr.com/home/news/xeloda-labeling-upd...
"The recommended dosage of XELODA is 1,000 mg/m2 or 1,250 mg/m2 orally twice daily for the first 14 days of a 21-day cycle until disease progression or unacceptable toxicity. Individualize the dose and dosing schedule of XELODA based on patient risk factors and adverse reactions."
My MO prescribed my dose based on the 1,250mg/m2 option, but she told me she always lowers the dose or "rounds down". So I started on a smaller dose than if she had prescribed based on the new 1,000mg/m2 option. My concerns calmed down after I realized my dose was not at the high end.
I started on 1500mg 2x/day for 14 days on/7 days off.
My MO said she usually starts with the 14 on/7 off schedule. If side effects warrant then she may lower the dose to something like 1500mg AM 1000mg PM while keeping the 14 on/7 off schedule.....or she may keep the initial dose and go to the 7 on/7 off schedule. I got a second opinion from a Mayo MO and she told me she usually orders 7 on/7 off because patients have fewer side effects.
I'm in my 3rd cycle. My bothersome side effects so far are increase peripheral neuropathy (like walking on blocks of wood) and fatigue. I've not had hand/foot symptoms yet, but apply lotion liberally twice a day and have been using several different lotions per suggestions offered on this thread. I've had two small mouth sores that cleared up after using 1/2 tsp salt and 1/2 tsp baking soda in 8 oz water- rinse and spit 2-3x day - doesn't seem like much, but it worked for me. My labs have been OK except for RDW CV and RDW SD which are elevated. I assume this indicates the Xeloda is affecting my bone marrow. I've tweaked my diet to reduce folate intake and do not take a B complex supplement. My next labs and scans are Feb 6. I'm of course hopeful the Xeloda has halted the progression in my liver and bones that occurred while on Everolimus and Fulvestrant (got no benefit from this combo)....and that my labs are OK.
I need to add: After starting Xeloda, I was informed by an oncology pharmacist, that since it is an oral chemo, high dose Vit C and Zinc should be avoided, the same as for any chemo whatever the route. The amount of Vit C and zinc in a multi-vitamin or obtained in the diet is OK. This was new information for me as Xeloda is my first chemo.
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I am coming off Xeloda. I’ve been on it 16 months. I will still keep this in my favorites. Hugs to you all.
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Hi Susan and to everyone here , i don't always post on here but I do read along as I am still on Xeloda. Just wanted to add I do think a lower folate diet does help. I am a big fruit and veggie gal and I just tweaked my diet a little. Instead of eating a spinach salad I eat iceberg or romaine lettuce helped with my HFS. I just try to limit my dark green veggies also. I haven't seen a change with fruit and I try not to each any beans. Didn't change my hot showers or coffee , I just can't lol. I agree with everyone it's just trial and error since we are all different.
I'm hoping to continue to ride the Xeloda wave as long as possible and I hope you can too. Positive vibes to all and best wishes for stable scans.
Andrea
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kbl, my oncologist kept me on fulvestrant only for a while once xeloda failed me. Now she has me on verzenio and fulvestrant even though I was on Ibrance four years. It is not protocol to go back on a K12 inhibitor after a first one fails, but she told me she has good results doing this. So far I have excellent results having been NEAD for six months now. Just thought I would add my two cents. I still lurk on this thread once in a while.
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Here's my list of low folic foods...
We can eat beef, pork, chicken, fish (not mollusks) , pasta, potatoes, green & yellow beans, peppers, tomatoes, peeled cucumbers, onions, carrots, squash, iceberg & red lettuce, apples, pears, peaches, watermelon, plums, dairy, yogurt, tortilla chips, pudding, ice cream, V8, Junk food.
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divine-yes I am on BP meds. My BP has fluctuated wildly for several years and no one could figure it out. But this past October, I was dx'd with hypoglycemia and post-prandial hypotension.
With the PH, my BP goes very high before I eat, and then goes very low after I eat. So I take my BP very often. I finally was able to see my endocrinologist a few weeks ago, and he said to eat pickles!! The high sodium should keep all of my blood from rushing to my stomach for digestion and instead bolster my venous system to keep the blood where it should be. It might be working, so far.
My cardiologist changed my BP med to Norvasc.
With the hypoglycemia, I had a fainting spell and my PCP ordered every test possible, and everything is okay. So now my diet is low-carb and low-sugar and low-folic acid. More challenges....
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lanne,
Thank you for the info on topical heparin for HFS symptoms. I see my MO in about a week after scans, and I will ask her about it. So far I haven't had peeling or blistering, but my fingers are getting callused, numb and tingly on the tips, which is affecting my ability to hold on to things. The neuropathy in my feet got worse in my second cycle affecting my balance, but it's a bit less now in my third cycle. I may ask for a dose or schedule adjustment if my scans look good.
Wendy
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Lanne-if you saw my multiple posts on the subject, foods with high folic acid is what caused my HFS. Urea killed my feet since the very last thing that I needed was an exfolliant.
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divine-I am still trying to figure out what caused my fainting episode. At 7:00 pm I had a bit of butternut squash, whole wheat toast with butter and 2 slim jims. At 8:30, I got horribly hot and very dizzy, and I seem to have blacked out for a bit. I was sitting in my computer chair and didn't fall off, so I guess the spell was brief.
When I "came to", my BP was 185/115. However, it has gone that high at other times, without problems.
I guess that the food combo was bad.
I am clueless about what to do. Today my lunch was chicken salad, pickles, potato chips (also urged by my doctor for low sodium), and coffee. As soon as I was done eating, I got light-headed. My BP had dropped 50 points systolic right after I finished eating.
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I'm on day 13 of the 3rd cycle - 1500mg 2x/day - 14on/7off. Have started to experience mild nausea, mild light headedness, pain in the heel area of one foot. This on top of numbness/tingling/dryness/redness/intermittent burning in both feet which affects my balance and numbness/tingling/dryness in all fingers which causes me to drop things and affects holding a pen, a tooth brush, flossing, picking things up, etc. I have scans and labs on Monday and see my MO on Tuesday. Hopefully the scans show the medication is working and hopefully my MO reduces the dose or changes the schedule to 7on/7off.
Wendy
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I'm on day 13 of the 3rd cycle - 1500mg 2x/day - 14on/7off. Have started to experience mild nausea, mild light headedness, heel pain in one foot. This on top of numbness-tingling-dryness-redness-intermittent burning in both feet which affects my balance. Plus numbness- tingling-dryness in all fingers which causes me to drop things and affects holding a pen, a toothbrush, flossing, picking things up, etc. I MyCharted my MO to report these symptoms. She told me to hold the last 3 scheduled doses, and when I see her next week, after scans and labs, she will lower the dose. Hopefully the scans show the medication is working.
Wendy
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Wendy- I had balance issues also after awhile and dropped everything! had leg cramps and also fingerprint wouldn't work on computer and phone unless I used cream right beforehand. feet were slippery (in yoga- even on a super sticky mat- so feet would slide in poses)
My balance is getting better, hands still dry- but, better. hope it all improves!
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Wendy, I hope the dose reduction helps. I’m sorry you’re having such issues.
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Wendy-I hope that you can have your dose lowered. My fingertips are numb also. I keep dropping stuff and it kills my back to bend over to pick it up. I have my reacher-grabbers in every room.
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Thanks nkb, kbl, and denny....your support is appreciated. It's reassuring to know these symptoms are common and to learn tips for dealing with them. I'd had read about the loss of finger prints, but didn't really understand what that was all about. Have thought about getting a reacher/graber as I too have to be careful with forward bending - must remind myself to bend my knees rather than my back. One unexpected outcome of the foot changes is that my usually cold feet during the winter are now comfortably warm most of the time - the good with the bad.
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Wendy-the fingerprint thing is no big deal for me, but I can't use my thumbprint to open my cell. But I have been on Xeloda for over 5 years, and it is what it is for me. And I have learned to alway hold a glass with a finger underneath, so it won't slip out.
Lol about the warm feet. Silver linings....
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weninwi.
How are you feeling. I haven't started Xeloda yet and am afraid it'll make it hard to walk. I hope they can adjust your dose so you feel better.
Susan
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gonegirl, the effects Xeloda has on my walking is minimal. I go to water aerobics and line dance class and do all the normal activities one does in daily life in and out of the house. I keep my feet lotioned up. I pace myself doing activities and am kind to myself but I don’t let hfs keep me from moderate activity. I hope your experienw with the drug goes well!
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gonegirl,
My feet are a little better now (less red, heel pain gone) after being off medication for 5 doses or 2 1/2 days off. So I'd say dose clearly makes a difference. I have not yet had any peeling or blistering. I have become more attentive and deliberate with walking, but have not limited my walking. The affect of HFS on my balance and walking is related to the fact that I started out with mild neuropathy. I still do a 30 minute walk outside most days - my pace has slowed a bit because my steps are a little less sure. One nurse suggested using a cane or walker - I balked at this suggestion. As per the suggestions by others on Xeloda, I lotion-up my feet every morning and at bedtime. I've avoided hot baths and stay out of hot tubs, but I do take a hot shower most days without obvious problems.
My other new symptoms are periods of mild nausea, mild stomach irritation, mild headache, and mild light headedness. Not sure what this is all about. Checked my BP and it's within normal limits; checked my blood sugar and it was within normal limits. Hopefully these symptoms get better too during this week off and with a dose reduction.
Wendy
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Divinemrsm, that's so good to hear. Walking is a big deal for me. I walk the dogs a couple miles everyday, and when my husband go on vacation, we walk everywhere. I could use a walking stick when I'm not walking the dogs. Good idea.
Weninwi, glad you're feeling better. I found this cream that is well reviewed and has 10% urea and hope it will help. https://www.sebamedusa.com/extreme-dry-skin-repair...
Meanwhile, I'm eating broccoli and asparagus while I can. ☺️
Susan
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Urea killed my feet since it is an exfoliant. But then, that was when I was eating foods high in folic acid, and my feet were terrible then.
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Question. The pharmacist told me I have to take 2 doses 12 hours apart, no more than 30 minutes after a meal. That's pretty rigid. We do tend to eat dinner about the same time every night, but what if we're delayed an hour or more? I asked the pharmacist how much I need to eat to buffer the drugs and she said however much I consider a meal. If dinner is delayed, can I eat a piece of toast and then take the meds to meet the timing? Oy. So much pressure.
Btw, she also told me to constantly wear socks or slippers to cut down on friction to prevent HFS. And she's having a test to measure possible deficiency in DPD enzyme. It's rare but can make side effects for xeloda far worse. It's good to know. https://www.cancerresearchuk.org/about-cancer/treatment/chemotherapy/side-effects/dpd-deficiency
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gonegirl,
You've got a good MO....my MO refused to do the DPD enzyme test - said it wasn't standard procedure. My Mayo second opinion MO said the deficiency is rare, but she would do the test if I wanted. I like my Mayo second opinion doctor.
I think up to one hour either side of the prescribed schedule is often considered OK?? You may want to find out what your pharmacist thinks about this?? My understanding is that food affects the absorption rate, so I always take my pills during or within 30 minutes of breakfast and supper, which means it may not be a perfect 12 hour interval, but it's close.
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Weninwi. Thank goodness you have the second MO. My previous oncologist left clinical practice and my current MO was recommended by several of the nurses. I like her so far. She's been listening to me which I'm very happy about and she seems very thorough and comes up with new approaches. The cancer got into a few vertebrae and I ended up with one of them collapsing so had to have back fusion surgery. So for latest scans she suggested a PET instead of bone scan since the bone scan would light up a ton with all the damage. Was so grateful she was coming up with new approaches. I'll talk to the pharmacist again. This is all very confusing for me. Mucho gracias
Susan
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Gonegirl, my routine is to take the meds at 8:30 am and 8 pm. I have an alarm set on my phone for both times or I would never remember. I’m not much of a breakfast eater so for me a small container of yogurt or a banana or a piece of toast might be all I have. Same in the evening because we usually have dinner by 5 pm. So at eight pm, it’s really more of a snack that I have.
I think the reality of taking it isn’t as rigid as it sounds. It’s important but after awhile, it becomes a matter of routine and isn’t intrusive.
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Gonegirl - A little side track here, but I just want to say how lucky you were to have the nurses all give you a recommendation for the new oncologist. Back in the day, it was the way to go, just ask medical people who they all go to. My experience these last few years, since I got cancer and am now "back in the system," has been that medical staff are all tight lipped about making recommendations. One time one offered, but then gave me a list of 5 people or something, so I didn't really think of it as a recommendation. Others just give you a "next name on a list" recommendation, and some just say vague things like, "Oh there are lots of doctors that different people like, depending", etc. I did find that after I selected a breast surgeon when this all first happened, I then started getting all sorts of comments from staff about how they all went to him too, recommended him to friends and family, etc., so I felt very lucky that I had gotten a good one (he was!), but that was all after the fact and I doubt that if I'd asked any of them initially for a recommendation, that I would have been given one. I think the way you did it is the best way.
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Re Xeloda schedule - timing between doses:
I asked my local oncology pharmacist and also the Accredo pharmacist about the timing between doses of Capecitibine. My oncology pharmacist said the following: "The bare minimum amount of time that I want between capecitabine doses is 8 hours. I'm more worried about you taking it with food over being exactly 12 hours apart." The Accredo pharmacist said the order reads: "Take 3 Tablets In The Morning And Take 3 Tablets In The Evening On Days 1 Through 7, Then 7 Days Off And Repeat." So my order does not specify a 12 hour interval. The Accredo pharmacist elaborated what we have all been told....that the medication should be taken with a meal or within 30 minutes of a meal. I asked why taking with food is important. He explained that food slows and reduces the absorption. I asked how the drug is metabolized, he said "liver". I'm going to keep taking my doses with my full breakfast and full supper. Daily reality means the interval is usually closer to 11 hrs rather than 12 hours, but like divinemrsm, I still set an alarm because I can so easily forget. I also asked my pharmacist if there was any contraindication with chamomile tea (there is with Verzenio) and her answer was "no issue".
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Threetree. Yeah, it can be a challenge to find the next doctor. I started asking specifically about a doctor. Maybe that's why they were more forthcoming? It was good to here that my current MO has a good reputation. Scary to switch. My last MO left clinical practice.
Weninwi and divine. Thank you so much for that info. Helps to know I don't have to be paranoid about when to take that dose as long as it's past 8 hours and with food. Right now I'm on 2 weeks on, 1 week off. I'm hoping they'll move me to 7 on 7 off. We'll see. Today I'm so stuffed from a larger lunch I probably won't even eat dinner. I'll probably do yogurt with some fruit with a small pita bread so I'll have a decent amount of food in my stomach. Meanwhile, I'm knocking on wood that this will work. I really appreciate everyone's help.
Susan
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