Capecitabine (Xeloda)

[LorryLou]

I have for the past 2 and a half years been taking Ibrance and letrozole. Unfortunately my last two scans have shown that they are no longer working and the cancer cells have started to grow. Tomorrow I start taking Capecitabine ( Xeloda) a chemo drug. 3 x 150 twice a day. 2 weeks on 1 week off. I was wondering if any of you have been on this regime and have any tips for me. Many thanks.

[DeedaSalmon]

I began capcetebine last November. 1300 mg twice daily with 2 weeks on and 1 week off. It was very difficult for me. The hand/foot/mouth issues were horrible. My tumor markers dropped significantly though. We have played with the dosage and break interval and have settled on 800mg mg twice a day with 2 weeks off. My body seems to tolerate this regime. Tumor Markers have dropped over 90% and my quality of life is very tolerable. Everyone has different experiences. Don't be afraid to ask for a lower dose or longer break. Find what works for your body. Good luck!!!

[RachH20]

hi, I am in the same situation with same drugs no longer working, how did your oncologist come to the idea of capecitabine? Mine is offering eribulin and everolimus but I’m not sure about this as it is a similar drug to letrezole. X

[Hazelgreen in reply to RachH20]

Eribulin and everolimus are usually prescribed for triple-negative breast cancer while capecitabine apparently is used for a wide variety of cancers (including colon cancer and gastric cancers). According to the Mayo Clinc online, "Capecitabine is also used together with docetaxel to treat breast cancer that has spread throughout the body in patients who have received other medicines (eg, anthracycline medicine) that did not worked well. This medicine is also used alone to treat breast cancer in patients who are not able to receive anthracycline medicine or taxane medicine".

[Sharonpat]

I have been on the exact same medication and I got told mine isn’t working either only got told last Thursday sept 14 th I’m waiting for my DPD enzyme test to come back them in starting oral chemotherapy capcetabine I’m a little worried too

[CTGirl1962]

My treatment may not be working as well, too. My doctor thinks I am progressing slowly. I will know more after my scans in November. Were you, by chance, offered the Viktoria clinical trial? That’s my next step. 🙏🏻

[Beryl71]

Good luck! I too was found to have an area in my scan but they moved me to Faslodex instead of letrozole. I'd be interested to hear how it goes as I imagine that will be one of my next options. X

[Bacididama]

I am taking Capecitabine since May this year, as Ibrance and Faslodex stopped working on me. I started with 1150mg twice a day, 2 weeks on 1week on. In the first 2-3 cycles, I suffered with the hand-foot syndrome, I could barely walk and I couldn’t even hold a pen.

My doctor suggested me to try Voltaren, and it worked so well!!Now I’m keeping the same dosage, 1week on 1 week off, with Voltaren twice a day, and there is no side effects anymore! Voltaren is working so well with my hand-foot syndrome.

[ChipCw]

I started Xeloda April this yr ,1500mg twice daily 2 weeks on and 1 week off ,hands and feet are worse side effect ,I put e45 on my hands at night with white cotton gloves ,I’m now on 9 days on and 12 off, recent CT scan shows no progression,best of luck ,

[LDR1]

hi LorryLou , there is a lot of info & past discussion threads about Xeloda on here, you can use the search bar at the top of the page to search for it. A lot of people have good results on this drug, and while many have some hand/foot effects those can be addressed by adjusting dosage & timing and taking extra care of your skin. In my case I had great results for the first 3 months, went through some dosage/timing adjustments to reduce side effects, then by the 6-month mark had to change drugs. Each person is different so I hope you’ll have a smooth and successful run on it 🙏🏼😊

[PJBinMI]

I'm also on Capecitabine, since earlier this year when it was figured out that my cancer was now triple negative. I'd alrready been on anti-estrogen since diagnosis in early 2004, 19 plus years ago. I was started on 2000 mg twice a day, 2 weeks on, 1 week off. Hadd to reduce dose and go to one week on, one off. Now I'm taking 1000 mg twice a day. My hands are dry and I get cracks in the skin, mostly on the finger joints. I use Vit E oil on them, and an Rx ointment. My onc initially recommended I start on a Taxane, but that made me concerned as it's made from the bark of Pacific Yew trees, and I'm allergic to trees, Onc wasn't sure about that, but the allergist I saw after starting Capecitabine, said it would not be a problem.

[Bettybuckets]

hi LL, I have been managing on xeloda since Xmas. I can’t walk far but I zip around on my e-bike and swim laps… I put 40% urea cream on my feet each night and then gel socks over it for a few hours and my skin hasn’t cracked. I also take vitamin E pill and celebrex but see another person above takes voltaren… do get yourself a fail NSAID if some sort.

I’m going to hear my scan results today and am nervous that I will have to move on to IV treatments. Most people don’t stay on xeloda for longs time but my Dana Farber onc told me that she was able to help her mother in law stay on it for 8 years! I think through close monitoring with breaks and dose reductions when needed. So that is encouraging. Good luck!

[Totheriver in reply to Bettybuckets]

Hope you get good results today🙏❤️. Theresa

[Bettybuckets in reply to Totheriver]

Thank you- I got a good results of stable disease! I’m so happy!

[Totheriver in reply to Bettybuckets]

That is AWESOME ❤️

[13plus in reply to Bettybuckets]

Yeah!

[Hopeful4Cure in reply to Bettybuckets]

Super duper happy for you! Yippy!

[Healthplus1]

Moisturize hands and feet twice a day with gloves and socks even if you are not having Hand Foot Syndrome symptoms; if it kicks in, it can be a doozy!

[viennagirl]

Dear LorryLou, I am sad to hear that your cancer is not under control on the Ibrance/Letrozole medication. If your Ibrance/Letrozole is no longer working you should ask your Oncologist if you can go off them for a couple of months and then go back on them. I heard that a woman with mbc who was taking that combo went off the combo and her meds started working again after a 7 week break. I have been on that combo for over 52 cycles. You might also see a naturopath and take some supplements that help you build your immune system. The naturopath I went to didn't tell me to go off the meds but she introduced me to other natural meds that might have helped me. I also spend a few hours a week on my WAVE MAT. You can go on line and search for wave mats and you will see a range of options. Mine cost 1100 dollars but I love that mat. It is filled with precious crystals like Tourmaline, jade, amethyst etc. I bought the one called PEMF. When the wave mat is plugged in it becomes warm - like and electric blanket. The warmth is comforting and is supposed to be healing. the mat is filled with crystals. Those crystals give off infra red waves that are healing. I wish you the best. Hugs Marlene

[Antares12]

I started Capecitabine a few months ago. It resulted in severe anemia with shortness of breath. The doctor took me off of it for three months to let my body recover. I'm back on it again with a reduced dose and 2 weeks on 2 weeks off.

[Fiercefighter13]

Hi LorryLou, I hope Capecitabine works well for you. I was on Ibrance/Letrozole and it stopped working after about 1 1/2 years although I stayed on it an additional year and the progression went form bone only to my stomach and colon. I was switched to Verzenio/Faslodex and that did nothing by that point. I'm allergic to Piqray......and so I've been on Capecitabine now since January of this year. My markers were almost at 600 when I started and now they are non existent. I take 1500 mg twice a day and strangely enough I have found that taking Zyrtec has helped with all of my side effects. I was having terrible hand and foot syndrome, then took a 7 week break from Cape due to catching Covid. I went back on it, after the 7 weeks, and just happened to start Zyrtec for my nasal allergies and the side effects never came back and the Cape is still working really well. I hope this information helps you in some way. Cape has been an outstanding medication for me and for many others from what I have read on this site. Good luck with it, wishing you the very best!!

[Hopeful4Cure in reply to Fiercefighter13]

WOW! That is just fantastic. Will you stay then at the same dose? I tried it last year and did nothing and my tm's just kept going up.

[Fiercefighter13 in reply to Hopeful4Cure]

Hi! Yes, I think I'll stay on course with the dose. This disease is so unpredictable, some meds work some of the time for some people, most of the time for others, and none of the time for the rest. We just keep fighting on, and hoping for time and quality of time. All in the meantime hoping and praying for better medicines and a cure. As your site name says, always hopeful! Wishing you the best, take good care!

[Timtam56 in reply to Fiercefighter13]

Hey Fiercefighter13. I know I’m a year late to this post, (Just started Cape 3 cycles ago) I’m on a very low does, thank goodness, cause I’m hating some of the side effects. IE:tiredness, so so so weary. Bones are a king right through to my core. I feel like I have the flu without a blocked head. My hands and feet are starting to tingle , and they are very swollen and feel a little like they are burning. But I can’t see anything but a little redness.

Other things. Hair is falling out. I still have some, but not much. And I am very shaky a lot of the time. (Whether I have eaten or not).

So it’s very helpful for me to go back and find these posts from all of you. I love you all and I”m hoping you are still around even if you are not all actively posting here.

Please answer this post if you are still reading. I’d love to hear from you and know what treatment you went on to next and if it was okay for you.

Timtam down under. Today is April 8th and on May 7th this year (2025) it will be my 7 year Metaversary.

[Fiercefighter13 in reply to Timtam56]

Hi Timtam56! It's been a while since I've posted anything. I am having some serious osteoarthritis issues in my spine which have kind of put my in a dark headspace. As if it's not enough to deal with metastatic breast cancer! You have come a long way, 7 years is good, and I'm wishing you many more years. I turn 6 years on June 18.....and hoping for more. I'm so sorry to hear about the side effects you are having on Cape, and I have a few pointers and hope they help you!! As far as the aching pains all over (which is my worst side effect of all), I take 300 mg of Gabapentin every 8 hours and that has helped more than I can put into words. I still have the aches and pains but they are toned down a lot. As far as my hands and feet I use Udder cream with 20 urea and after my shower each day I use Dragon Balm Cream with CBD and THC rubbed on my feet then covered with udder cream and socks, and that keeps my feet from being unbearable. Some days I have to give in and take oxycodone for the pain and more so now, with my spine collapsing from the osteoarthritis (so much for having been a runner and weight lifter all my life, it did not help me in the end) My doctor had prescribed methylphenidate at one point to keep me less tired but it didn't do much. I discovered that forcing myself to be busy, and lots of Starbucks helped that. I have a group of girls friends that force me out of my misery with a once a month brunch date that we all get together at a nice restaurant and just talk. We laugh, we talk, we complain, we cry......it's uplifting for sure. I make a point to see my girls and my grands often, go out with them, and then see my best friends sprinkled in the middle, and that has helped me ignore the fatigue. As far as losing your hair, could that be the aftermath of your last medication? My hair has grown like crazy on Cape, and is past my hips now....I'm cutting about 2 inches a month off and it still gets thicker and longer. My doctor told me she has a few patients like this. Hopefully it's just the last med doing it's voodoo on you?! As for me, I'm in pain management now for the arthritic spine, which I was relieved was not cancer, but pissed that it was anything more. My head has been too focused on my cancer lately as I've been on Cape for gong on 2 1/2 years and I'm waiting....tap, tap, tap, for the shoe to drop, but so far it keeps working and keeps me quite miserable in some regards. Never enough to go off it though. I think that's the balance I have found in keeping busy with my family and friends, it's worth the misery to still be with them.....

I hope some of my experience with meds to help the side effects helps you!! Please keep in touch with me, I will keep sharing any new things I find to help deal with Cape as I keep going on it....I feel like a Cape veteran by now! Take good care, enjoy life....it's precious no matter what ❤️

[awesome4ever in reply to Fiercefighter13]

It's fabulous to hear that you are having such longevity with Cape. Thanks for sharing your tips. I know Cape will be up next for me. I hope you continue to keep going on your treatment line. You are a strong woman. Take care.

[awesome4ever in reply to Timtam56]

Hi Timtam. I'm sorry you are experiencing some unpleasant side effects. Unfortunately it comes with the territory. We were diagnosed at a similar time... it'll be 7 years for me on May 1st. Try and stay positive, even though I know it is hard sometimes. Take care.

[Hopeful4Cure]

You got that right. You too..Blessings

[Sharon0122]

sorry to hear your meds aren’t working anymore. I was told I may have to change from Ibrance and antrozle due to my ANC count. He’s waiting to see if it drops anymore. I’ve been on it two years. I now have Mets on my kidneys and those drugs only treat breast cancer and he’s talking about radiation after a biopsy. I’m a little nervous about that. Best to you and hugs!

[kokopelli2017 in reply to Sharon0122]

hi Sharon. if you have 'mets' to the kidneys, it is still 'breast cancer'. the biopsy will be very helpful in determining/clarifying the type of cancer...i.e. hormone status, her2 status, mets vs primary cancer, lobular vs ductal etc. best wishes. carole💛