xeloda.

[Eliactida1955]

hey ladies ! I’m going to start xeloda in a couple of days. My mbc has progressed in bones and now a spot on the liver. Any info for me for people that are on it? They are stopping the fulvesterant which was all I was on and he really wants to do chemo but I want to try this first. The dose is high 5 horse pills a day -three in am and 2 at night. Please advise if can❤️

[Joannaaaa]

Hi Eliactida, I'll be starting this too shortly, not sure of what to expect but wanted to wish you well with your treatment and I'm sure some of the ladies here will share their experience.

[Eliactida1955 in reply to Joannaaaa]

thanks for responding and let’s keep in touch. I don’t like that it’s five large pills a day. I hope it works with no side effects or minimal. 🌹

[Widdershins3 in reply to Eliactida1955]

If those horse pills become too much for you, I had them switch mine to a much smaller pill. Of course, that means swallowing more of them, but still--I've choked on large pills in the past and didn't want to be taking a bunch of them while I'm here alone--it's just too scary for me.

They're generic for it: 150mg tablets, manufactured by Accord

[Bettybuckets]

Hi Eli- I am just 4 month ahead of you.. and it is cumulative but your feet may floater in the first week if you do a lot like I did. I had been told it wouldn’t get too bad until about the 4th month so I played pickle ball and walked. I ended up having feet so sore I need to go into a wheelchair to make it long distance through airport.. just a month into therapy… but that was just me recovering from over doing it on the beginning. So walk less and I don’t think you can play tennis or any quick movements activities.

I must be larger than you(150lbs) so I got 6 horse pills but it was too much. They cut me down and then had me first work back up to 4 pills one day then 5 pills next…. And now I am back to 5 pills for 7days on then 7off.

One thing I would want to warn you is to not expect your feet from HFS to be better for n the week off. It is just as bad… maybe in rh last day you will feel better and then it will be time ti start up again. But it is manageable and I thank good every day I am not nauseated or fatigued like I was in the other meds. Just the feet are bothersome… just give them care by by putting the 40% urea cream on them at least nightly. I switched to swimming laps and I csn bike ride with no issues but walking and even standing for hours makes my feet angry and red looking. Hope that was helpful. I agree with you to put off IVs and remain on all the by mouth therapies you can. This is a good therapy if it works for you. Good luck!

[Bettybuckets in reply to Bettybuckets]

oops meant your feet may blister( not floater!) in first week if you don’t rest them

[Photo-Bug in reply to Bettybuckets]

This is out of context even though I had been on Xeloda. I was on 2 tabs in the am and 1 in the pm doing 1 week on and 1 off. Besides the letrozole in the beginning, this was my favorite drug. Unfortunately the hand and foot syndrome was too much for me.

I was checking in to see if you finished your NZ trip. I lost the link to your wonderful trip.Someday I will 🤞make it down there.

Right now because of IV chemo I have end up with a 100.4+ 🤒 🌡 and off to the hospital I 🏥 go for at least 4 days and 3 nights. Four trips already this year.

Sharon

[Eliactida1955 in reply to Photo-Bug]

I wish the best for you. And hope this xeloda works so scared of the hand foot thing. I think you are thinking of someone else although we are traveling to Greece israel turkey and the Greek islands last year. We hope to go again in a few days. If the side effects are minimal. Be strong and recover and I wish us both the best. I have never had chemo I v or radiation or surgery it was stage 4 and the onc wanted to do it still does but stage 4 so not cured. I put it in Gods hands since aug 2018. Take care🙏✝️

[Eliactida1955 in reply to Bettybuckets]

thanks for the insight and I guess I have to do something but it’s scary. We will see and hope for the best.good luck and yes I am 200 lbs so I guess that’s the extra horse pill. Good luck in your treatment-🙏✝️🌹

[JMDavis]

Hi there! I’m on round five and relative to other treatments, I’m feeling far less nauseous and tired on Xeloda (six pills for me!). The only issue as previously mentioned is the feet. They get sore, red and start peeling mid cycle but do resolve (mostly!) on the off week. I also apply Urea cream twice daily and wear some super comfy memory foam slippers around the house and that does help! All the best to you with your treatment!

[Bettybuckets in reply to JMDavis]

oh and I bought and now wear bigger sneakers as my feet get angry and red with even tight fitting socks.

[Eliactida1955 in reply to JMDavis]

thanks so much for your reply I feel a little better starting it tomm or Monday. Take care and let’s live and wish for the best!🙏✝️

[Verbena1]

I’ve been on Xeloda (and Tukysa) for about 3 months now, went from 10 pills a day total down to 9~

So I take 2 Xeloda in the am and 3 in the pm. Not a fan of horse pills, usually I chew all my pills, just something that helps me get them down. But with Xeloda you’re not allowed to break or crush them ugh

The good news is that it works very well, and fairly quickly in my case. So there’s that…

For me the side effects have been tough. I sometimes say that nausea, gut issues and extreme fatigue daily are the price I pay for staying alive ha. Those have gotten somewhat better, but still really affect quality of life.

The foot thing is a nuisance (some burning, occasional peeling and redness) but to me the symptoms of that have been much easier than the others, and the Udder cream does help.

I would say just see how it goes for you: if you do have any unfun symptoms that are too intense, your onc can lower your dosage.

Wishing you all the best with Xeloda -

[Eliactida1955 in reply to Verbena1]

thank you for the insight and I wish the best for you and me🙏✝️🌹

[Lmurray52210]

Please make sure you are tested for DPD deficiency prior to taking Xeloda. Check out test4dpd.org for more info if you are unfamiliar

[Eliactida1955 in reply to Lmurray52210]

thank you for telling me this but md Anderson and dr here don’t fell like it’s necessary but still I wonder. This med is so old I kinda wanted a newer one. I just pray it works!!! Take care! 🙏✝️

[LDR1 in reply to Eliactida1955]

I’m surprised your MD Anderson doc didn’t test you for that enzyme - easy to do and rules out the possibility of a serious reaction. Dana Farber now tests all their patients before they start Xeloda.

I started Xeloda 4 months ago - initially 3000 mg (6 pills) per day with 14 days on / 7 days off. Due to foot discomfort we made several dose adjustments and have landed on 2000 mg (4 pills) per day, 7 days on / 7 days off. Now have zero side effects and my mood & energy levels are much better than when I was on Ibrance. Initial scan showed good progress in shrinking my liver spots. Wishing you much success!💕

[Eliactida1955 in reply to LDR1]

I really like Dana Farber but M D Anderson is probably not what we think and the onc Dr I might change. I talked to my dr here this am and no they don’t do it-weird. I hope for the best and I’m not afraid of tweeking but they told me I could start off 6 pills then bump to 7 two weeks on and one week off. I am afraid of the hand foot but will stop it if anything happens or cut back. Let’s see I really liked ibrance and did not want to stop but it wasn’t working anymore. 😪 I wish you the best and me too. Take care and thanks for the info-your response is good and helps me. 🙏✝️🌹

[PJBinMI]

Apparently my cancer cells changed from E+ to triple negative, after 19 years of successful treatment with estrogen suppressing treatment for MBC. I just finished my third round of Xeloda. First two rounds were 4 pills twice a day for two weeks on then one week off. My hands got red, tender, and I got skin splits on several fingers, plus they were very sensitive! Later, the skin peeled. I had to be off it for 3 weeks for my hands to heel, but not quite back to pre-Xeloda. Now, I'm taking 3 pills twice a day, week on week off. I'm on day two of my first week off that schedule and my hands have gotten a bit pink and slightly more tender but no where near as extreme as when I was taking the higher dose for longer. My onc did give me an Rx for nausea but I only felt a little nausea for the first 2 or 3 days I was on Xeloda. She also gave me an Rx for ointment for my skin cracks. I used that plus a weaker version of the same ointment prescribed by my allergist on my whole hands and wore cheap cottton gloves I found on Amazon. Using alot of hydrating cream or ointment on your hands and feet may help you lessen the hand foot side effects. And I have become a real big fan of those white cotton gloves (less than $10 for 10 pairs).

[Eliactida1955 in reply to PJBinMI]

thanks so much for the reply and yes I worry this will be third med I’ve tried and ibrance was a good run for three years. I worry about that hand and foot syndrome and my skin is sensitive also number of pills seems a lot but I am 200lbs and they go by weight and height. They stopped the fulvesterant that I was on alone for like 6 months bec it progressed small spot to liver. I hope this will work. Praying for you and me. 🙏✝️🌹take care and be strong !! We are living….

[Fiercefighter13]

Hi there! I was on Ibrance/Letrozole/Xgeva and it failed after 1 year, but stayed on it for almost three years while Metz kept spreading. Moved on to Verzenio/Fulvestrant/Xgeva and failed from the get go, six months of more progression. Tried Piqray/Fulvestrant and had a major allergic reaction that put me in the hospital. I’ve been on Xeloda for 3 months and markers have so far gone from 586 in January to 109 two days ago. I have Metz in bones that had progressed to stomach and colon. I feel better than I have in years, Metz are shrinking away! This has been a Godsend for me. I hope you can try it and it works just as well for you! It does have some side effects but they are manageable for most of us, not too cumbersome. I started on two pills am and two pm but I worked up to three and three to get the maximum benefit from it. Best wishes, take care.

[Eliactida1955 in reply to Fiercefighter13]

I’m sorry for all you are going through and let’s hope things will be ok. I’ll start this med tomm but scared to death. Third med for me and ibrance was a good run with letrozole for three years. Then affinitor for like 10 months didn’t work and the fulvesterant by itself for 6 months and tumor markers double with small spot to liver that is new. I hope this works. Scared about that hand to foot thing. I wish you the best and hopefully things will work for us . Take care and be strong!!!🙏✝️🌹

[DDIL1 in reply to Fiercefighter13]

good to hear this is working, do you by chance have an ESR1 mutation ?

[Eliactida1955 in reply to DDIL1]

I will start it on Monday this med xeloda. They never tested me for any mutation that I’m aware of. Thanks for responding. 🙏✝️

[caw517]

I have been on Xeloda since mid September. I am on 3000mg per day. 1500 in the am and 1500 in the pm.( 6 pills in total-- and yes -- large !!) I have been metastatic for 7 years after original diagnosis 17 years ago, with multiple recurrences in between. In those 7 years I have been on Ibrance for 5 years along with exemestane, faslodex and others.

Last summer I developed multiple(!!) skin lesions and tumors. that's when I started xeloda. They responded and began to shrink very quickly which has me encouraged about xeloda.

One comment about my dosing. My onc is using the protocol of one week on , one week off to help keep side effects to a minimum. And that is working. i know many talk about the HFS but I have avoided that so far. The fatigue is still rough but that is about it for side effects. Good luck and Blessings!!

[Eliactida1955 in reply to caw517]

thanks so much for making me feel better you ladies are a God send. I worry about this testing DPV or DPYD that is done prior so I put a call to the dr. Md Anderson never mentioned a thing. It’s been around a long time and I’m hopeful it will work. I wish you the best it is my fourth med and ibrance was the best for me. I took affinitor less than a year and then Fulvestrant alone for 5-6 months and liver lesion appeared and progression in bones so hopefully this will work. I wish you the best too. We will be strong! Take care! 🙏✝️🌹

[mountainwoman1]

I have been on Xeloda for about 9 months, one week on/one week off. I initially had severe fatigue and hand and hand-and-foot (swelling, blistering, redness, and peeling). My oncologist has lowered my dose twice during that time and it helped tremendously. I still have redness and peeling, but no blisters. So don't be afraid if you need to lower the dose. I use Bag balm on my feet. It worked better than Udderly Smooth for me. Both are recommended.

Other than that I have tolerated the medication well.

[Eliactida1955 in reply to mountainwoman1]

that bag balm is great for the cows and humans I’ve heard . Thanks for the tip and info I’m so scared of this hand and foot stuff. I have delayed to start it on Monday now. My onc called and gave me ok to start 6 pills instead of seven a day to see how I’ll do. Let’s hope for the best. I hope I can tolerate it. They want me two weeks on and one week off we will see. Take care and God bless you 🙏✝️

[Antares12]

I had the same progression. Started Xeloda 4 weeks ago. The first dose really made me tired and I slept most of the time for three days. After that things got better. I'm now on my second cycle and not quite as tired. My onc has me taking an anti-nausea pill 30 minutes before I take the Xeloda. One time I forgot and got a bit nauseous. Diarrhea hit about a week into the first cycle. Immodium took care of that.

That's my experience. I hope it helps you.

[Eliactida1955 in reply to Antares12]

thanks so much for the response I don’t see how I can be sleepier -exhausted and on nothing-will start it Monday. Getting all info now—scared of the hand and foot and some test they say is needed before starting it but they don’t order here or MD Anderson. It looks like it affects everyone different-let’s see- I wish you the best. Take care!🙏✝️

[Antares12 in reply to Eliactida1955]

I was anemic when I started, so that probably attributed to the sleepiness.

[Eliactida1955 in reply to Antares12]

yes I am anemic also so worry about it . I hope it works and I’m so tired now even though I have never had I v chemo or radiation. No surgery. I was diagnosed sept 2018. I wish you the best too. Thanks for responding to me . 🙏✝️

[macspow]

Good luck to you and let us know your progress. I don't have an answer but, as a man, I have the exact same condition as you including 2 small spots on my liver now. Ibrance w/ Fulv worked for 6 mos. before it didn't. I was then going to go w/ Piqray w/ Fulv but reconsidered at the last hour. I chose Taxol instead. I had my second weekly infusion of Taxol yesterday - 1 hour, 150 mg.. btw - I still do Xgeva 1 inj. a mo. Best, Jim

[Chamisa]

I was on Ibrance + fulvestrant for four months after my MBC diagnosis.  My lungs improved but my liver progressed and my bones got a lot worse.  I’ve been on Xeloda (the doc took me off of both the Ibrance and Fulvestrant) for three months.  I had my scans last week and everything has improved.  Yay!  I am tolerating the Xeloda better than I did the Ibrance/Fulvestrant.  I had a continuous-background slight nausea on those.  Enough so that I had no appetite and I lost weight.  The only thing about Xeloda is I developed hand/foot syndrome immediately.  I started moisturizing my hands and feet the day I started the Xeloda, so I never had any cracking or bleeding.  My feet did have pain.  My oncologist said she hoped I’d be on the drug for a long time, so she changed my dosing schedule to keep my feet from worsening.  I had been taking 3500 mg daily (3 pills in the morning and four in the evening) for two weeks then one week off.  The doctor changed me to a metronomic schedule —week on, week off, week on, week off, etc.  Dosage stayed the same.  My feet and hands are still red but not awful.  I have no pain.  (I still have neuropathy from my chemo years ago).  Xeloda is quite “doable” for me.

[Eliactida1955 in reply to Chamisa]

so good to hear and I hope I do as well. I am so scared of the hand-foot thing but I will be proactive with the creams . I will start Monday on it they want 7 pills but I told them 6 to start and let’s see. My bones hurt and feet already so hopefully it won’t be worse. I think in the beginning that letrozole did me in and I was weak but toe three years with ibrance it worked . Affinitor and aromasin no and past 5-6 months fulvesterant no bec the markers doubled and I felt so bad. Thanks for responding to me . I wish the best for you and all of us . ✝️🙏🌹take care !!! We will beat this!!!!

[Chamisa in reply to Eliactida1955]

I want to add that I am also an MD Anderson patient.

Another thing to watch for is folates and folic acid in your supplements and food can increase the severity of any side effects.

[Eliactida1955 in reply to Chamisa]

thank you I read about that- who is your onc there? Do you like them. I’m not happy with mine.

[Chamisa in reply to Eliactida1955]

I was lucky.  I like my MDA doc.My local oncologist (@ UTSouthwestern, and I like her, too) wanted me to go to MDA for a consultation.  She said “I respect them and I trust them.”  She also said it would be easier to get into a trial if I were already in their system.  She didn’t have a specific doctor in mind for a referral so I just got the luck of the draw.  My MDA doc is Dr. Rachel Layman.

Then my local onc went on maternity leave (sooner than she had anticipated) and several things happened but basically my care slipped through the cracks.  I respect UTSW so I was a little surprised and quite disappointed.  When I went for my MDA consultation and Dr. Layman said “clearly the Ibrance isn’t working” (everything but my lungs had gotten much worse), I decided to become her patient.  

Houston is a four hour drive from my home so it’s inconvenient but doable.  I stay at the on-site hotel. And the Xeloda that Dr. Layman prescribed is working much better.  I had a liquid biopsy at MDA also to help determine any future treatments. I had had scans and a lung biopsy at UTSW in Dallas. I’ve since been scanned at MDA. My original BC was in 2015.

[Eliactida1955 in reply to Chamisa]

wow thanks for the info and sorry for your progression. So far bones and spot on the liver no where else. We will see I start it on Monday. My dr is dr Ibrahim up at MD and really I’m not that impressed . I am not an easy patient bec I am a nurse and you know we are critical and the worse sometimes. I never went their path and my dr here does minimal. No I’ve chemo no surgery no radiation and I told them in the beginning ibrance when I researched it. I hope we will be alright and I wish for us the best. Take care and let me know how it goes 🙏✝️

[Chamisa in reply to Eliactida1955]

Thanks.

Back in 2016 I had 5 months of chemo AC-T (protocol, adriamycin, cytoxan, and taxol). Then double mastectomy, no reconstruction because I was having unrelated pelvic floor prolapse issues and I had a hysterectomy plus three pelvic floor reconstruction surgeries—- I said I was done with surgeries!

Then 6 years of arimidex. After five years of the anti-estrogen therapy, the doc retested the tumor. Supposedly there was only a 1.6% chance of recurrence. WRONG. This was at a local cancer center. I went to every checkup and did everything they asked. So how did it get so widespread!!? Anyway I never liked my oncologist so I took my care to UTSouthwestern in Dallas.

If you don’t mesh with your onc, change oncs! This is a long term relationship and it needs to be with someone you like and respect. You can probably request a different MDA doc.

[csw73]

I have been on Xeloda since November 2022 and my last PET in January showed an "excellent response" to this treatment with lesions in my spine almost totally disappearing. I am due for my next PET this month. My only bothersome side effect is Hand and Foot Syndrome where my hands and feet burn, itch, and peel. Also the hyperpigmentation of my skin. I am African American, so my skin has darkened significantly on my hands, feet, and face. I have read that it would be excessive redness on a lighter complected person. But I'll take these few bothersome side effects over the alternatives. I get to keep my hair, feel mostly normal everyday, and not deal with constant tummy troubles. I'm good with that.

[Eliactida1955 in reply to csw73]

thank you for your response I’m worried about the hand foot thing and will start out with one less pill. We will see. I hope for the best. Take care and I wish you the best results🙏✝️

[csw73 in reply to Eliactida1955]

you're welcome. I take 8 pills a day (4 am and 4 pm). I started off doing the typical 2 weeks on, 1 week off for my very first cycle...but didn't tolerate it well. So, my oncologist put me on an alternating schedule of one week on, one week off instead...which has been much more tolerable, yet still just as effective. I wish you the best with your treatment as well.

[Eliactida1955 in reply to csw73]

they are starting me on 7 pills a day but I begged to start with 6 and see how it works. My weight is 197 so I p the mobility. guess that’s why more pills as most people are taking 6. I am worried a bit but what can I do? I wish you the best and maybe this will work for a bit to stop the progression. I am weaker in my legs and muscles and bones hurt so trying to keep up the mobility. Take care and may God bless you!!! 🙏✝️

[Marla61]

I am on my 4th round of Xeloda. The fatigue was bad at first but manageable now. Rest when you need to. I rub Urea cream on my feet at night and wear little socks. My feet are discoloring around the toes - look like dirty streaks but no pain or peeling. I am on 3000 mg daily for 14 days/7 days off. My appetite is poor and foods don't sound or taste good. I'm losing weight which isn't good. So I'm trying to eat protein rich/calories foods to keep weight on. But my tumor markers are dropping and my pelvic pain is lessening which is good news. I wish you luck.

[Eliactida1955 in reply to Marla61]

I go for lab too early I think but so far no side effects and I feel better. When did the feet thing start? My feet are not that pretty bec of veins but I itch and sometimes othe places. I have with all the meds I have taken. So far the best with this med so I’m hopeful. I go for lab in an and I hope for the best-I hope your appetite improves I am fat but lost weight could lose more and right nothing tastes the same. I wish you the best 🙏✝️we will be strong!

[Widdershins3]

I start Xeloda soon and just found out that the giant horse pills are not the only way to take the medicine. I can't swallow pills that size, but my oncological pharmacist found a smaller pill that I'll need to take more of. Which is OK with me, but I can see it would be burdensome for some people. If you have trouble with the big pills, do ask for the smaller dosage one. Good luck!