All about Xeloda
Comments
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I’ll be starting xeloda soon. Leaving verzenio behind though it worked well on ER/PR posit mets. I have skin mets that are triple neg. Why the heck these flipped to negative I’ll never know. But I will be taking 3000 mg a day for 14 then off 7. I’ll still get monthly fulvestrant injections too.
I spoke to integrative oncologist and oncology pharmacist at Mayo . They told me to avoid any supplements with folic acid but not to worry about folate in food. I have IBS and don’t eat a lot of leafy greens or gas producing veg but I do eat a lot of nuts for protein and calories.Pharm also told me that using voltaren gel morning and night on feet and hands was a game changer for avoiding hand and foot problems, which sound awful. I also have a 40% urea cream I’ll be using too.
If I can’t hike and do yoga, I’ll just lose even more hope since it keeps me sane. I’m horrified by the awful stories about peeling extremities.Anyone have an okay experience on this drug? I hate to stop Versenio but I need a better dam to hold back all progression.
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@claireinaz , I’m on Xeloda and use Voltaren, urea cream and aquaphor religiously. I have HFS but am managing it. I figured out that I can walk up to 2 ½ miles. I don’t have a problem with yoga and go to Zumba classes with no issues. I went to a running store and got some good shoes and good socks. I don’t really have a problem with food, a little bloating and gastric reflux. I keep tums handy. The good thing about it is that I can pretty much live a normal life and the drug works!
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I have been on Xeloda for 7 years and I am glad that the pharmacist warned you about Folic Acid. BUT I had severe hand and foot infections from eating foods with folic acid. I was guilty of eating large spinach and avocado salads and broccoli almost every day, etc. You can eat those in moderation, though. If you eat a handful of nuts daily, they might not cause a problem.
I did stop taking my multivitamins since they have folic acid.
I do use Aquaphor at night with socks on my feet and food service gloves on my hands. During the day, I use Aquaphor and socks, and Gold Bond diabetic cream on my hands.
So now my hands and feet are only dry and never sore. I don't agree with using Voltaren, though. Even the literature with it says that it can damage your liver. If you watch what you ingest, you probably won't have sore feet.
You should still be able to do yoga, but I don't know about hiking, since I don't do so.
I am on 2,500 a day at 7/7, and that is the standard dose. So if you do have problems, you might ask for a reduction.
I tried Urea, but it made my feet worse, so use it cautiously.
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Thank you, denny123. I can only go with what Mayo tells me at first, but I guess we also need to know we tailor our needs to relieve side effects too.
Aj, what socks did you buy? Can you share the brand?
I am a barefoot girl in the house. I hate to think I have to wear stuff on my feet all the time.
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@claireinaz , for walking I got Feetures socks. No blisters since I started wearing them with my new New Balance shoes. BTW, the itchy bumps are gone.
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AJ, thank you!
denny123, why do you only walk about 2 or so miles? I’m a hiker, and conditioned to go 4-5 easily. Would that be bad?0 -
@claireinaz -I don't hike, but I get at least 3,500 steps in a day just walking around my house. I don't hike or even go walking, since I get out of breath so easily.
My left diaphragm is partially paralyzed which causes me to get out of breath constantly. I had a recurrence about 10 years ago in 2 chest nodes, and the anterior mediastinal node damaged the nerve going down to my left diaphragm. So I am very limited in how far I can walk. When I go outside to do yard work, I am okay for about a half hour only.
My feet are okay since I watch my diet, and even if I could hike, I wouldn't take the chance of going for a hike. But you are just starting out, and you will be okay for awhile.
At this point, I have lost most of my toenails, so be prepared for that if you are on Xeloda long-term. I really do miss wearing sandals.
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Lovely. Thanks for the good news. More to worry about. I’ve never heard about this side effect before nor did my Mayo pharmacist ever mention it.
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@claireinaz My onc never heard of the folic food problem, but I sure proved it to him. I get my Xeloda pills from my health insurance pharmacy and only half of the pharmacists know about folic in foods. The literature with the pills also caution against eating blood oranges.
Since you don't eat the folic foods, you might be okay. I was also eating dried beans which is bad, and it seems like you can't. My folic blood levels are still normal, so I am still getting plenty.
I hope that you can still do your hiking, but if your toes get sore, treat them at first with Betadine for a few days, and then Bacitracin. The infections can last for weeks, so try to treat them right away.
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Well, here I am. Another failed treatment has landed me here. I am so sick of looking up treatments and their side effects. I am done with this shit. Honestly.
Anyway, I suppose I could read about Xeloda here or just ask if people are working while taking this? Yes, I know that everyone is different but it would be good to hear that people are managing side effects well.
Thanks for any information you can share with a newbie is appreciated.
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@dulcea we're really sorry you are in this situation !
Xeloda is a drug that many people tolerate very well. As with every drug, there is the potential to side effects. One of the more prevalent ones that people report is Hand foot syndrome, so be aware, and there are things you can do to reduce the chances of getting this.I think you'll find a lot of helpful information in this thread, as cumbersome as it may be to read.
We are sending you gentle hugs!
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@dulcea Sorry that you had another failure. I have been on Xeloda for 7 years and most of us find it very tolerable if we eat less of the high-folic acid foods.
Xeloda reacts to folate and even the literature that comes with it cautions us against folic supplements. I was miserable for the first 2 years with badly infected and burning hands and feet. But then I remembered reading about cutting back on foods with high folic acid. I was eating huge spinach and avocado salads, a lot of dried beans and broccoli several times a week. Once I cut those back to normal portions, the infections stopped and my feet are now only dry.
I use Aquaphor at night on my feet with socks, and on my hands with food service gloves. During the day-Aquaphor with socks, and Gold Bond Diabetic cream on my hands.
My bloodwork shows that my folic levels are normal, so I am getting plenty. I also stopped taking my multi-vitamins since they have folic acid. I am retired since I am 75, but depending on your occupation, you should be able to work.
My dose is 2,500 a day at 7/7 and that is a reasonable dose.
Some ladies use Voltaren on their hands and feet but that is just a topical solution and can be harmful to the liver. All you have to do is watch your diet, and not go overboard on the greens like I did.
Also, take the pills a half hour after a meal or snack since they work better on partially digested food. I have no hair loss and no nausea.
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Wow @denny123 ! You are the expert after 7 years. I love hearing about these positive results. It does give me hope and we all need to go into new treatments with hope.
Thank you so much for the information. I did do some reading on here but it was hard to put it all together like you did. I am so happy you said there was no hair loss too. I hope that is true for me too since mine just started growing back in after losing a lot from previous treatments.
It looks like I'm starting at 3,000 mg /day for 14 days then a week off. What does 7/7 mean?
I hope this works. I just need something that works.
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@dulcea 7/7 is 7 days on and 7 days off. So you are at 14/7. 7/7 is easier than what you are doing and 3,000 is a high dose. At your first sign of red and sore feet, you should ask for at least a 7/7 schedule or eventually a lower dose.
Doctors like to start high and see how it affects you. But since you know about the folic acid problem, your initial response might not be too bad. I didn't know about folic for 2 years of a lot of pain.
I am here for you!
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Thank you again @denny123. I have always meant to ask about why they always start so high instead of building up to a high dose. Maybe they don't want to give the cancer a chance to build up resistance. I don't think this is going to be fun.
I was sad to see eggs on the high folic acid list. Do you eat eggs at all? I am OK not eating all those greens. Pizza and ice cream sundaes don't have a lot of folic acid, do they?? LOL.
When you say painful feet, does that mean from the HFS or general pain? I like being active and need my feet! I walk a lot at work (special education paraprofessional) as well as yoga and trail hiking. I am lucky that I only work part time and have all those school vacations and days off. One gets addicted to those!
Reading through all these posts, I see a lot of familiar names from other boards along the way. Hello everyone! I guess we are on the same path.
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Hi Dulcea! Love your screen name. It reminds me of the musical direction to play “dolce” which means ‘sweetly’. I’m a violinist. Please get some diclofenac gel & start using it twice a day (followed by a thick moisturizing cream, not lotion).
Also, as a highly educated retired pharmacist, I can assure you that the small amount used on the palms and soles is NOT going to cause liver damage. The warning on the product is to deter arthritis sufferers from continually applying it to all of their aching joints several times a day.
I find padded athletic socks inside properly fitting shoes is key to comfort. They are usually only available in white however I’m not a high fashion person so I don’t care, even donning them in summer with sandals! I quit wearing almost all my old shoes. Best wishes for success in this.
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@vlnrph thank you for the advice. I do have some diclofenac at home and will start using it before I start the meds. I thought that was only prescription, but I guess not. I have also spent the last few years buying comfy shoes, so hopefully it all works out for me. I work with kids so I really don't want to horrify them with witch hands. My MO said she has patients that have never acquired the HFS. Lucky them!
Dulcea is the most powerful and master warrior who joined the Mighty Morphin Power Rangers. My three boys grew up in the initial power ranger craze so I what else would I call myself raising three boys who were born within four years? I like "sweetly" too.
I got a text from the specialty pharmacy that my pills are ready to ship, It doesn't look like it will be 3,000 to start. Thank goodness.
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@dulcea I do eat an egg every morning with no problems. We can still eat a moderate amount of the high-folic foods. LOL- pizza and sundaes are fine! My folic acid levels are always normal, so I am getting plenty. My main problems was that I was eating huge spinach salads with avocados for lunch. After a week of that, my feet were horrible. So I was eating way too much of that. I had a huge blister that covered my whole big toe that took 7 weeks to heal.
I get my 3,500-4,000 steps in a day with no problem. At first I was able to continue to use my treadmill, but back then, my feet were sore from my folic problem. I like Skechers with memory foam since they cushion my feet.
By foot pain, I mean the burning. And it is usually in the morning and dissipates through the day. Yoga won't be a problem. I no longer get the blisters and foot cracks that I did for my first 2 years. After a hike, if your feet start to get tender, take a break and let your feet heal. Then start again slowly
I no longer use my treadmill daily because I also have balance problems and my BP is erratic. I no longer walk outside on my local trail since I have a partially paralyzed diaphragm from my BC recurrence. So I get short of breath after 100 steps. But that is just me.
Most chemos are started at a high dose, to see how much we can tolerate. I have had that happen with several of mine.
In the beginning, I did buy a lot of ice socks and ice gloves for the burning that I no longer need. They can be helpful.
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@dulcea I forgot to mention about the infected toenails since Voltaren should not be applied to open wounds (unles vlnrph disputes that). They can start suddenly and your toenails can start to bleed and be painful. I had gone to a podiatrist who told me to apply Betadine for a few days, and then follow up with Bacitracin and bandaid.
My infections lasted for weeks and it did help to also wrap gauze around the toe to cushion it. That was back in the beginning for me. Hopefully you can catch those before they get too bad. Or not at all as long as you nosh on pizza!
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@denny123 Yikes! Toenail issues too? I already have some toe issues so I hope it doesn't happen. But I understand not to put the voltran on open wounds. Thank you again.
I got my call to schedule the delivery of the meds and talked to the pharmacist. I am being prescribed 2,150 mg twice a day for a total of 4,300 per day. Does that sound right? The pharmacist said it is prescribed based on height and weight. I am 5'6" and 135 pounds and don't consider myself huge. I was reading the information online and it is usually prescribed at 1,250 twice a day for a total of 2,500 per day. I think I need to confirm this with my MO. I also will be having a tele-med visit with my second opinion doctor before the meds come for another opinion about this!! 10 pills per day and 4,300 mg of anything sounds like a lot to me.
What have others started at?
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@dulcea That is an insane amount! I have never heard of anyone getting that much. I am only 5' and weigh 140 and started at 2,000 a day total at 14/7. But when my feet got red and sore, he took it down to 7/7.
I am now at 2,500 since when my feet got so bad, my onc took me off Xeloda for 7 weeks. Then a liver spot showed up and I asked to go up to 2,500.
Yes, folic made my toenails suddenly bleed and get infected with no warning. And I wasn't hiking or walking.
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Denny, an RPh who graduated from Purdue (the #2 pharmacy school in the US at the time) with highest distinction would never recommend applying an OTC anti-inflammatory gel to an open wound! Instead, a trip to urgent care might be suggested.
When my fingertips became red/sore on capecitabine along the cuticle margin, Epsom salt soaks twice a day helped immensely. This treatment was also described by the podiatrist who took care of my first ever ingrown toenail.
It’s true that most of our chemo protocols start with the maximum tolerated dose as determined by clinical trials which are not designed to find the minimum effective amount. Dulcea, it appears that digits were transposed. 2150 vs 1250…
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@vlnrph OH MY GOSH!!!!!!!!!!!!!!!! I can't believe the doctor transposed the numbers and then the pharmacist didn't say anything to me about the extremely high dose. I asked her to confirm that I would be taking 5 pills in the morning and 5 at night and she confirmed it and said it was based on height and weight!!
Ugh! Imagine if I started taking that amount! I owe you a debt of gratitude for catching that for me. You are clearly a great pharmacist to even consider that the transposition! I am sending a message to my doctor right now. This is not the first time she has confused things. Scary.
Thank you, thank you SO MUCH!
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@vinrph..I never suggested that Voltaren be used on an open wound. When I had my first infected toenail (caused by eating too many high-folic foods), I went to my podiatrist. She told me not to soak in Epson since that would dry out my skin too much. (I had been doing that). She told me to put Betadine on it for about a week, and then use Bacitracin until it healed. That worked well and that is what I continued to do with my 2 years of infected toenails, until I figured out the cause. Betadine is not a gel and is used for wound care.
I would have spent my entire 2 years in urgent care which was overkill.
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To continue my starting dose saga:
The nurse at my MO's office confirmed my starting dose as 4,300 mg/day based on my height and weight (1.69 BSA X 1250) twice per day. I also called the specialty pharmacy and talked with a pharmacist who also confirmed this as the recommended starting dose. I was told to just call the doctor with side effects so they can reduce the dose if necessary.
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Coincidentally, I had a tele-visit with my second opinion MO today. She said that she starts people at 3,000 mg per day and 4,300 mg per day in way too high and not necessary. My local MO is just going by the pharmaceutical recommendations. The SO MO stated that trials always find the highest tolerated dose, not the least effective dose, which is why they always start so high.
She is going to email my local MO. Thank goodness I have her! And all the smart ladies on this board ❤️.
Thanks again @denny123 and @vlnrph . I appreciate your advice.
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@dulcea The suggested 1250 mg/m2 twice daily takes into account your skin surface area of 1.7 meters squared (which is the adult female average). This amount is not just milligrams but also relates to your BSA. When multiplied it does seem to come out high.
It’s confusing when we use shorthand in describing the units used. I was guilty of that myself earlier this week on the 14th when describing possibly transposed digits (that error may not happen as often now with computer menus but years ago the Rx was hand written).
However, my initial prescription was calculated at the 1000mg per m2 level then rounding down to 1.5g for 3x500mg tablets am & pm with food. I have required dose reductions on all my meds for metastatic disease so my MD usually begins low.
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@vlnrph yes, when you use the pharmaceutical formula, the dose comes out very high.
I got a message from my local MO to start 3,000 mg per day. Thank goodness. My first two treatments had to be dose-reduced as well due to severe side effects. I have a long list of allergies to medications so I always panic when I am prescribed new medications, especially at the highest dose! I am just a sensitive person.
I have also been taken off faslodex. Since it's been over a month since my last injection, I am getting tons of hot flashes all of a sudden. Does anyone know if that would be due to the faslodex or the cancer itself? I know faslodex reduces estrogen so I'm not sure it's due to that since lack of estrogen causes hot flashes. Just another fun side effect of the wonderful journey I guess.
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@dulcea It's great that they will start at 3,000. But that is still too high. As soon as your feet and hands get red and burning, tell your onc. I am almost at 23 years of MBC, so I am a hard case and I was started at 2,000 with active chest node mets. And 2,000 worked for me until my properties changed.
I was on Faslodex with Kadcyla for 2 years and it didn't work and I hated those shots anyway.
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