All about Xeloda
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Welcome Stace,
It depends on your dosage. Some ladies can continue to walk daily, but I think that you should cut down a bit at first to see how you react after your first few weeks. That is when your onc might cut back your dose if you have very sore feet.
I have been on X for over 3 years but on a vacation from it for a bit since I had severe reactions from eating foods that are too high in Folic Acid...salads, nuts, beans, etc. A good site to consult is FolicAcidNow.net. But Folic acid might not bother you as it does me.
I use Aquaphor day and night.
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Hi Stace,
I am also someone who clocks a lot of miles walking my dog and have to admit to struggling a bit with HFS. I haven’t had a major issue yet but there has been ongoing sensitivity/soreness to the point that I know I need to back off or blisters would be on the horizon. I have been ensuring I walk with very padded socks but now that the weather is warming it’s getting tricky. And gardening doesn’t help.
I am religious in using Udderly Smooth but when things start to escalate I use the Aquaphor. It’s greasy but effective. I’m just starting round five so can’t speak to doing this long term.
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Stace, I'll PM you.
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Welcome Stace. Yes I had huge problems with HFS, but dosage reduction has helped - I’m also a Walker and retired PE teacher. Well padded socks and shoes are a must ( Fitflops, smartwool or bamboo socks and great trainers like HoKKa) as is moisturising at least twice a day... I was given a ‘ chemopack’ for the hospital which includes Aquadrate and Zeroveen which is Aveeno. My feet have been burning from. the inside out, blistered and very painful. Now no pain but quite a lot of peeling skin to deal with. You WILL get a balance in time!
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My bone mets were originally ER+, PR-, and her2-. Now with the mets to my ovaries, it is ER-, PR+, and her2. I am waiting to actually hear from my mo about how we begin Xeldoda. I am worried I will have to give up things I enjoy like woodworking and gardening. Anyone know?
Do you get anything with Xeloda to help with side effects? Only after side effects begin?
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Hi Dutch and welcome! I am sure that Joyner will send to you a lot of helpful suggestions!
I use Aquaphor night and day. And foods high in Folic Acid (leafy greens & veggies, etc), can make your HFS worse. I am currently on an X vacation because I was bad and ate too many big salads.
I have been on X for over 3 years and can still do yard work and take care of my container garden. Woodworking might still be okay if you wear gloves to cushion your hands....if that is possible.
I use ice socks and ice slippers a lot.
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I shall!
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Thank you Denny. I was sure hoping I could still enjoy my hobbies some especially since I am hoping to retire this summer. I have been off from work since the beginning of April.. Did they prescribe any meds in anticipation or for prevention of side effects?
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I take Biotin and B6 but I really don't think it makes a difference. I am only on 2,000 a day at 7/7 but I have to take it easy. So far, the worst thing for me is Folic Acid in foods. This is a good chart....FolicAcidNow.Net.
My feet were not too bad for my first summer on it, but after 3 years, I have noticed a difference.
Also get comfy shoes with memory foam. I wear Skechers all of the time, and a bigger size than usual, since my toes swelled up. For my first year, I wore cushioned sandals. But now my toes look too ugly to show them.
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Dutchiris, I'm going to PM you in a moment.
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I have a question I’d like you all to weigh in on, and would like to know whether your doctor has mentioned anything about this. I had both shots of the Moderna vaccine (plus had Covid in January). Now my son sends me info today from the Center of Disease Control website that says “If you have a condition or are taking medications that weaken your immune system, you may NOT be fully protected even if you are fully vaccinated. Talk to your healthcare provider. Even after vaccination, you may still need to take all precautions.”
So does this apply to those of us taking Xeloda? I thought I was up on all the necessary Covid information, but now I am unsure what to think. I’m going to cross post this on the Covid vaccine thread. I’ve been going out more lately since being vaccinated tho I still wear a mask and so far so good. But what role is Xeloda playing in all this?
Below in blue is the CDC info I quoted:
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Divine, I was only advised by my MO to schedule the shot on my off week, this was before it was determined that due to my severe PEG allergy, I should not (and did not) get the vaccine at all, at this time. I never heard anything about the protection being diminished for those on immunosuppressant therapies or who are otherwise compromised. All media info seems to leave out this group entirely from what I’ve seen, or rather, not seen.
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Divine, I think this info hit Canadian media today but I’m still searching. While there are no guarantees, I suspect that Xeloda does not hit us as hard as many chemos. How is your blood looking? My white count seems to trend low regardless but my neutrophils have not bottomed out like it did on Ibrance and CEF. So, I hope, we are likely to have a reasonable immune response but likely not as good as healthy folks.
Perhaps a quick call to your MO? I think even if we are a bit low, once everyone is vaccinated our risk goes down. I can’t speak for others but I tend to be careful anyway - not to the extent with Covid but washing my hands a lot and keeping my distance more during flu season.
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I’ve already discussed the level of protection re COVID vaccine with my MO. ( I’ve had both doses of Astrazenica with only mild SEs). Basically they just don’t know how protected we are as there’s not enough data for those of us who may have compromised immune systems. We are just one huge clinical trial and it’s a wait and see situation. I gave permission to be contacted re research. I’m on Capecitabine/ Xeloda and still had a low blood count at my last clinic after 11 days off! Had to go in the following day for another test and waited over 3 hours - the bloody lab ‘lost’ my vials. My NP was pretty annoyed! Took another draw after the 3 hrs and I left. My NP rang me later to say they ‘found’ the first sample which was still too low....and the second sample was fine. We laughingly agreed that the 3 hours of stress was probably what kicked my bloods up!
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Thank you all so much for your insights. My bloodwork is actually some of the best its ever been. When I was taking Ibrance and Verzenio the white and red blood cell counts tanked but currently are very steady in a good range.
My next onc appt is early June so maybe the doc will have more to say. We’ll see.
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Divine, I commented on your question on the covid vaccine thread.
Dutchiris, I hear your worry about losing your woodworking and gardening. Cancer steals so much from us. I was on Xeloda for two years, and my opinion is this: You will not have to give these things up if you get the dose right and take good care of your hands and feet. My approach was to take very good care of my hands and feet from the beginning in order to preserve them for my dancing and gardening. So for example, I found ways to avoid friction and heat on my hands and feet, like not washing dishes by hand, having someone else open tight jars, and not going barefoot. I was consistent with gentle moisturizers. I accepted some redness but not anything disabling. I wore gloves for gardening. My onc was satisfied that we had an effective, sustainable dose. (I took 2000. I am a pony.)
I read something here on BCO about standard dosage being different in Europe vs. the US, and that it was thought folic acid supplementation through fortified foods in the US but not Europe had something to do with it. The metabolism of Xeloda is affected by this. So, Denny, have you discussed that research with your onc? Maybe you could go ahead and eat those healthy foods, and adjust your Xeloda dose to suit.
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Regarding Hand-foot Syndrome --
Once in a while, for newbies, I like to recommend an article from July 2010 Oncology Nurse Advisor entitled "Prevention and management of hand-foot syndromes". Below I briefly summarize some main points about causes, prevention, and treatment; and mention some ways I applied the information when I was on Xeloda.
Possible causes and prevention:
—Small amounts of the chemo leak out of the capillaries into the hands and feet, damaging tissue. Therefore avoid heat, pressure, friction, and harsh chemicals on hands and feet. Some examples would be hot water (incl. with rubber gloves that trap heat), sun, saunas, tools that cause a lot of pressure. So be mindful when you cook, garden, build, etc. For example, if possible get help with opening tight jar lids, and use warm water only for showers and use cold water at other times.
—Local delivery of high drug concentrations occurs through the sweat glands, of which there are many on the palms of the hands and the soles of the feet. My idea about this is to wash the hands and feet a couple hours after the pills (peak blood level), and whenever they feel sweaty. I also change my socks a lot, and take off my shoes when I am sitting for any length of time.
Possible treatments:
—Dose reduction
—Pyroxidene aka Vitamin B6. I wouldn't take a supplement without my doc's advice, but I figure I might as well pay attention to foods that have a good amount of B6, such as turkey, chicken, salmon, eggs, cheese, lentils, beans, carrots, spinach, garlic, bananas, whole-grain flour, chia seeds, and pistachios.
— COX-2 inhibitors to reduce the inflammatory response. e.g. The NSAID Celebrex. Ask your doctor. I did a bit of research and found that oregano and ginger may have similar (though I expect smaller) effects, so I cook with them and drink ginger tea. (If you are on blood thinners run the ginger tea by your doctor.)
—Vasoconstrictive therapies such as localized cooling. So I rinse hands and feet with cold water, especially a couple hours after my pills or whenever they feel hot.
—Topical emollients, especially those containing lanolin. Lansinoh is a nice one; find it in the breastfeeding supplies section. It is too thick for regular use but superb to help broken skin heal. I also recommend O'Keeffe's Healthy Feet, which contains urea but not a huge amount, which could be bad for sensitive skin; Shikai Borage Therapy Foot Cream, and Everyone Lotion with coconut oil. These are all paraben- and fragrance-free.
I hope these notes will be helpful.
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Thank you everyone for your responses. I had an appointment today with my local MO. I have to say it makes me a bit nervous to be prescribed two medications for nausea. My Xeloda should arrive next week.
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Wishing you the best with Madam X, dutchiris. I see that you were on Ibrance and I have to say, that was a hard drug for me (along with Verzenio) and I’ve found Xeloda much more tolerable.
I want to say a big THANKS to those of you who mentioned GoodRx coupon for Xeloda (capecetabine). I took my prescription bottle to Walmart today to be renewed along with the coupon. They took the info off the coupon, said they’d order the Xeloda and it would be in on Monday. Later the pharmacist called saying the old place I was getting my prescription from, Onco 360, required me to call them and approve the transfer. I did that, then let Walmart know. Then even later, a Walmart pharm tech called and said, “Mrs M, do you know your insurance requires a copay of $250 for this prescription!?” I said, “I told the guy this morning I was using the GoodRx coupon and he put all that information into the computer, I don’t want this run through my insurance”. She said, “Ok, just a second.” Well, she was very surprised the coupon brought the price down to $50!
So I’ll be saving two hundred dollars a month on this medicine! It makes me so happy! Thanks again, ladies!!!!!
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ShetlandPony,
Thank you for all the tips for HFS! I just started Xeloda yesterday and am looking to get ahead of SEs if possible. I appreciate everyone’s posts! Nausea hit me hard yesterday but today I’m taking meds for that and it’s better, but I also started Tuksya, so a lot going on.
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I have been following the efficacy of the vaccines considering the fact that we are on chemo. My onc said that my treatment of Herceptin and Xeloda doesn't lower my whites much at all and to get whatever vaccine that I could get. And it doesn't matter if I am on or off Xeloda that week, since the stuff always stays in your body.
BUT, I have been cautioned to always be careful even after getting the vaccines. Unfortunately, I live in a county with a lot of anti-vacciners and anti-maskers. So as of today, only 50.5% of my county has been fully vaccinated. I don't know when I will feel safe enough to eat in a restaurant or even shop in a store.
I had my Herceptin IV today and showed my feet to my PA after being off X for over 3 weeks. Since I have been careful to avoid foods that are high in Folic acid, my toes are much better.
I asked her if I could go back on X after my next Pfizer Vaccine which will be May 20, and she said okay. And I also asked if I could start at 1,500 a day at 7/7 and she approved. If, after a month all is well, I might go back up to 2,000. And I am NOT thin...at about 30 pounds overweight.
But since I have been on chemo for 19 years, I am perhaps more vulnerable.
Shetland posted an interesting article, but in the B6 statement-lentils, beans and spinach are very high in Folic acid. So I have to avoid those. And yes, today I gave the PA a copy of the fact that Folic Acid can cause worsening HFS. She didn't know that??? And apparently neither did my onc.
Dutchiris-I don't have nausea with X, and I have used and liked Emetrol in the past....even better than Zofran. Emetrol is OTC.
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Denny it's good you have figured out what makes the hfs worse for you. I am curious about whether you eat many ready-made breads and cereals that have folic acid added? When you say more vulnerable, do you meant that your body is kind of worn down by years of treatment? Sometimes I feel that way after these ten years on treatment, almost seven of them mbc.
Dutchiris, consider those anti-nausea meds as just-in-case. Take your Xeloda after a full meal that is not challenging to your gut (you know, not very fatty, spicy, etc.). You may not experience any nausea. Kikomoon, I am sorry you have nausea. Good that you now have meds for it. There are quite a few anti-nausea meds out there so you and your doc should be able to get it under control. Sometimes the body just needs an adjustment period.
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Shetland-that is right. After 19 years on chemo and MBC, my body is worn down a lot!
I am on 2 Facebook Xeloda groups and when I posted about the Folic Acid, several ladies commented that it could also be their problem. One lady had been wondering why she could no longer eat her favorite lentil casserole since now it makes her throw up. And another lady was very sick after eating spinach.
So apparently it affects us differently. I do eat fortified bread (Actually I am addicted to WalMart's homemade Italian bread).
And my breakfast still includes toast, scrambled egg with a slice of cheddar cheese and OJ. And all of them have a bit of Folic Acid. But it is darned near impossible to survive on only meat, potatoes and junk food every day.
Also, for the ladies who get nausea, I have read here or on Facebook, about putting the pills into gelatin capsules.
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Hi all. I have finally gotten things back to normal after two weeks of diarrhrea. I am not currently on any chemo drugs and have been off Xeloda since April 13. I met with my oncologist of Wednesday. He wants to see me in two weeks and I am currently staying off chemo drugs until after I see him again. He has not ordered any blood work so I don't know how he is going to decide what to do. He did mention a reduced dosage of Xeloda with a schedule of 7 days on and 7 days off. Not sure if he knows what he is doing. The good (great) news is my tumor marker was 85 which is the lowest it's been since January 2020. I was stunned at the TM number but I'll take it. I was in the hospital for 12 days because of the diarrhea and afib. The oncologist did not know I was in the hospital (which is located in the same building as the cancer treatment center) and did not come visit me. I was pretty shocked at that. My previous oncologist (the one who was fired after 24 years) came to see me in the hospital in the morning and evening every day I was there. Am I spoiled? I did have an internist who is assigned to the hospital come see me once a day. Is that satisfactory?
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Hi I’m starting Xeloda after being on Kadcyla. My bone biopsy showed that my receptors flipped and I am no longer HER2+ and low ER+. I’m praying Xeloda works for me other wise I am likely triple negative. From triple positive to triple negative. I’m really struggling today. I’ve read a lot of the board for advice. I’m just wondering if there’s anyone like me who is having succes on Xeloda. Wondering if there are long term survivors. Thank you.
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Hi txmom....that is me too. I am a 19+ year survivor of Stage 4 MBC de novo. Originally ER+, PR-, Her2+++. I was on Kadcyla for almost 4 years. It did put my chest node (2) recurrence into NED, so my onc gave me a 9 month break and I was only on Herceptin.
But the nodes came back and that time, Kadcyla did NOT work. I had Foundation One testing and the nodes had turned to Her2- Somatic (gene mutation).
My onc put me on a clinical trial of Poziotinib which was super toxic, but only 8 days of the pills wiped out the nodes (and darned near wiped me out, too).
I have now been on Xeloda & Herceptin for over 3 years. But I am on an X break for 6 weeks since I ate too many large spinach salads, which are high in Folic Acid. My feet got terrible, but are slowly healing up after a 3 1/2 week X break.
As of my last CT scan, I am still NED.
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Hi Denny, I think I just wrote you questions on FB. Lol. So are you still HER2+? Also how do you manage HF syndrome? I was doing well for 5 years then went on Kadcyla and it was way too toxic for me. I’m scared starting Xeloda.
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txmom, just want to reach out to you and say sorry you’re having a tough time today. I have been there before so I understand the feeling. I hope tomorrow will be better for you and also hope Xeloda is effective for you. Many hugs to you!!!
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txmom-I am Denise on Facebook with a pink BC heart, so maybe you did-LOL. I don't know if I am Her2+ yet or not. My chest nodes changed to Her2-, but if/when I have another recurrence, I will need testing or a biopsy to determine that.
My HFS wasn't too bad until I was bad and ate healthy salads. I use Aquaphor day and night, Betadine or Bacitracin on toenail infections.
When my feet burn, I sit at my computer with my feet on ice packs or in ice slippers. I like NatraCure ice socks or silicone gel socks at night, and food service gloves on my hands....with Aquaphor of course.
I don't exercise (I can't anyway since I broke my ribs 4 times in a few years by doing virtually nothing). And I don't do a lot of walking.
I eat everything in moderation, and I don't touch alcohol or pure soy.
I don't have nausea with Xeloda, but my Kadcyla constipation has continued with Xeloda. Since a lot of ladies have diarrhea, I thought that maybe things would even out, but that didn't happen.
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txmom, I've been on Xeloda for 28 months and am stable so far and doing reasonably well. I'm going to PM you. Hang in there, girl-
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