I’m looking for some “positive “ input from anyone who has been on Xeloda. Hopefully there is someone who can give me some insight in to what to expect. And how long you were on it.
I have been on Ibrance (4 years) and Hormonal treatment for a total of 5 years. My last treatment was Tamoxifen. After 4 lines of treatment I now have to go on Xeloda. I’m ER positive Her2 negative type of cancer. I have Mets to my thoracic spine. Originally when diagnosed I had Mets to spine, lungs and a lymph node. I had good success with the hormonal and targeted therapy until now.
I have dreaded this time (as we all do) when I would have to go on chemotherapy.
Any tips and insight on how to navigate this treatment would be helpful.
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I have learned NOT to google anymore when put on a new medication. One can drive themselves crazy and you could search and find different responses.
I wait and take it and then if I feel something may be from a side effect or not (sometimes like my onco said, cancer is not the reason for everything), I then google to see if some others have had the same side effects. But I stopped that researching thing. It was getting to be too much and not really helpful at all.
Me too, not so much research. Relying on support nurse at the clinic I go to. But I do appreciate hearing about others on this site who are on the same journey.
I was on Xeloda for 22 months metronomic dosing. Except for the first week when I experienced stomach discomfort (not diarrhea or constipation), everything went well. I had none of the side effects everyone dreads. For me it was the best medicine ever and I hope I can go back to it I’m the future.
May I ask if you were given this when it went to your spine. I am starting this in two weeks. 8 pills a day, 4 x a day and I was told jaundice, hand and foot, toenail and finger nails turning black.....I thought this was a last result drug for me. She said if this does not work either than I will have no longer then the 6 months and maybe a bit less bc the two meds I was taking to stop the cancer in my liver did not work. MOre tumors grew and the tumors there got bigger she expected bc I just lost two months on meds that did nothing so I would need to add that to the calculation. If it does not work, 4-6 months or if I cannot handle the side effects, then 4-6 but then including the two months I spent on tamoxifen and afinitor that did nothing but spread the cancer more in my liver.
Please tell me anything at all good about this medication and did it have anything to do with liver spreading to your cancer.
I wont be around for xmas, my bday and I just trying to find a place that will allow me to put on my life insurance as proof that they will be paid.
This sucks. I have nobody to help me and nothing worse than dealing with that also.
I was on Xeloda for lung, liver and bone lesions. It worked for 22 months and I only took 3 tablets a day but with no rest day. I don’t think it did anything for my liver tumors. But my low dose meant that I didn’t get to suffer any side effects.
Wow. I am waiting for it to arrive from the speciality pharmacy. She told me it would be 8 pills per day broken down into two times a day.
Thank you for mentioning that you were on it for 22 months. That gives me hope although the fact that I will be taking 8 and you were only taking 3 makes me wonder if my liver is worse off with the cancer. I would be excited to have 22 months.
Confused. Why do you state that you think it did nothing for your liver tumors if you lived for another 22 months? My onco basically told me if this Xeloda does not work, that I have 4-6 months of life left.
I was only on the afinitor for 8 weeks but I never got those mouth sores that people spoke of getting while on it.
The Xeloda worked for my lung and bone Mets but the last pet/ct scan showed progression in the liver. Unfortunately, if someone has multiple Mets, the meds might work on some areas but not on all. I remember reading some posts here though that Xeloda worked for their liver Mets.
May I ask how many pills you were prescribed to take per day and what were your dosage instructions. My onco is saying 8 pills per day (twice per day at 4 each time) and then a week on and a week off. It seems excessive amount of pills so curious to see how others were prescribed it.
Having this week off any heavy duty meds reminds me of how I used to feel, normal and good. Not sure I want to start up this treatment, which may not work, and just suffer the side effects while losing the time I have left feeling sick. Very confused and battling back and forth with decisions.
I was on metronomic dosing meaning no rest days. I took my pills continuously but my dosage was low compared to yours - just 3 tablets a day 500 mg per tab. So sorry for the late reply. My husband and I are visiting our daughter in Singapore and I haven’t had a chance to check emails till now.
So kind of you while you are going they your stuff. I am currently so nauseated… I think that means progression for me… to stomach lining so will prob make change to xeloda soon.
I’m on it now and have been since May. I’m on 2300mg twice daily and it’s not to bad. I get an upset stomach towards the end of each cycle which is 14 days on then 7 days off at present. I’m going to speak to oncologist in September about maybe reducing dosage slightly as I’m very tired while taking it. Hand and foot I’ve moisturised morn and night and fingers crossed that’s going well. Tumour markers look to be dropping so that’s a positive. It really isn’t that bad. Hope this helps slightly. Helen xx
Thank you. This is what I am trying to find out. She said 8 pills a day for me (she didn't mention or I didn't hear the dosage). A week on and a week off. She said if I stop treatment, I would have 4-6 months left, and if I take this drug and feel awful and it does not work, then I will lose what remaining time I have left anyway and it will still be 4-6 months. I am just getting tired of these side effects and if I have only about 4-6 months left, I do not want to be grasping at straws.
I never question how long I have left as I and possibly many more do not want to know and have to live day by day waiting for the dreaded time scale they have given!!!! This medication has different side effects on different patients. Some good and some bad so we can only say how we get on with it but personally if it’s only fatigue and bit soreness on hands and feet that I have to deal with to remain here and see my grandchildren grow up I’m sure I’ll suffer the side effects and enjoy whatever time is left without worrying how long I have.
That is the difference. If I had family, children, siblings, grandchildren, nieces and nephews, I think I would be like you and want to spend every moment I could with them. But I do not have that so it is not like I will be missing anyone or, quite frankly, that anyone relies on me or will miss me. Anybody I ever cared about is gone.
Also forgot to say my oncologist has got patients who have been on this medication for numerous years and are still here so that’s got to be a bit of a relief
I just started the stuff myself! The generic, that is, Capectibine, which I may just have misspelled. I was fine on Ibrance and Faslodex for over four years and a CT and PET just revealed liver mets and maybe something in my shoulder but I had no pain or other symptoms. So far, I'm taking (I'm on my fifth day) four 500-mg tablets with breakfast and three with dinner. I feel a slight nausea but not enough to make me throw up or stop me from going to the gym. But they are not sure the stuff is working yet--another PET will reveal that in early September. I could have had a PET earlier but they said my planned (one week) vacation was fine, so I'm taking it (looking forward to the Alps). Here's hoping this stuff works. Also taking the generic of Avastin. Have heard from other women that this is fairly tolerable; have heard from my oncologist that around week 3 I may get hand-and-foot syndrome. Dr. Internet says if I don't, the stuff's not working; my oncologist said that's sometimes true and sometimes not. She's much less gloomy than Google, I must say, and I think she'd tell me if things were hopeless. Still a few rabbits to pull out of hats if this stuff fails. Meanwhile, I'm climbing every hill around the Alps.
Thanks for your reply. I’m getting more hopeful as I read the replies from my post. Have a wonderful trip in the Alps. Looking forward to hearing how well the medication is working for you 🙂
Good for you. A vacation. I do not blame you. Go and enjoy! To me getting out of Brooklyn for a day would be a vacation but I do not drive and none of my friends live in Brooklyn anymore.
I’ve have been on Xeloda now for 6 months. I was on the highest dose but this cycle it has been reduced to 1650 as I had really upset stomach. I’ve just had another scan and I’m awaiting results. My last scan 3 months ago showed a reduction in Liver Mets and bones and lungs were stable. I do feel sick two hours after taking meds but it passes as quick as it comes. No hair loss or joint pain as such. I feel tired some days more than others but that’s to be expected I suppose. I also have sore feet and hand syndrome but I’m prescribed a good moisturiser that I use morning and night. It really helps.Good luck on your new meds and honestly if you have side effects your Oncologist can reduce the dose with no I’ll effect on the way Xeloda works.
May I ask if you were one week on this med and one week off. My onco said to me 8 pills per day (I am not sure of dosage) and it would be taking 4 pills twice per day. I would be on med for one week and off med for one week.
Hello! I too have metastatic breast cancer in my bones from my neck to my femurs. Was on Ibrance and Letrozole 2.5mg for 31/2 yrs then it stopped working. Markers went through the roof. Was put on Verzenio and Faslodex- did not work at all. Xeloda was the next step. I was terrified to go on it being the fact that I dispensed it to other cancer patients on a daily basis while working at a Specialty Pharmacy. I spoke to patients about their reactions-some good and bad. Never thinking I’d be taking it one day myself.Well, I’m here to say that since taking it, my markers have drastically decreased in only 4 rounds! I was also taken off the Letrozole and Faslodex. Only on Xeloda and Xgeva (once a month). I am on my 5th round now and side effects are not too much. I get constipated, and sometimes nauseous. For that I take Miralax and drink lots of water and the Zofran helps with the occasional nausea. The biggest effect is the fatigue. As it has built up in my system, the fatigue has gotten worse. But I look at it as a trade off. I’ll deal with the effects as long as the Xeloda keeps working! And that’s what I pray for every day.
Fifi313. Thank you for your reply. You have given me some good insight at what I might encounter on this medication. It’s great news to know Xeloda is working for you. I hope any side effects ease up.
I forgot to tell you that the medicine can cause hand and foot syndrome. What that means is the skin can start peeling. My hands are fine boy a few spots on my feet have started. I was using Utter-cream and lotion with 10% & 20% UREA-over the counter. But that was too weak. I just got an Rx for the 40% lotion. Try the over the counter first, if it doesn’t work, ask for the RX.
MY onco who is putting me on it and I have to wait a week is having me on them (8 pills a day, twice at 4 pills) and then ONE WEEK ON and then ONE WEEK Off.
I I chose that I cant deal with the side effects or the drug is not working so it is spreading more in my liver, how much time do I have left.
She said 4 to 6 months but maybe a bit more or bit less depending if Xeloda will do anything. If not bc I spent two months on afinitor and tamoxifen for 60 days and all I got were much larger tumors and new ones growing.
I had verzenio (50 mgs. twice per day) and falsodex injections and it worked for a bit over three and a half year. I cried when it spread to my liver and that treatment was stopped (although my onco waited another three months after it spread to my liver to change my treatment so my next CT scan show that it had spread significantly in my liver.)
I just cried bc it was like saying good-bye to a good friend. Odd, how some meds work for some people and not others.
My onco is going to have me do a week on and then a week off, etc. I had started at first with Ibrance and she never told me that about my week off. (I guess everybody is different), but I felt so so sick on my week off. It was August and it was very very hot and I turned off the central air, put on my wool robe and was under my cover and had a towel between my teeth bc I was so cold they were chattering and I was afraid they would break.
I only lasted three months on Ibrance bc of how sick I felt. She never suggested (and it was not until I joined this board) that I realized I could have suggested a lower dose.
I am on week 1 of my second cycle of 4000 daily, 14/7, and so far, so good. A bit of nausea in first cycle swiftly dispatched by sickness med, feet tingling and feeling warm but not sore or discoloured, tired but not dramatically. My nurse said that the side effects can be cumulative and increase gradually, and others have mentioned getting hand and foot syndrome in the third cycle, but I keep moisturising and wearing comfy shoes. I joined the Facebook group and someone asked the question about if no side effects mean it is not working, and this doesn’t seem to be true- one lady never got HFS and was on Capecitabine for over 3 years, another had terrible HFS but it didn’t work for her at all. My nurse said they have seen some fantastic results and it is mostly well tolerated, so fingers crossed.
Jackie. I believe I’m starting on a lower dose of 2000 daily. I had mentioned to my oncologist I would prefer to start on a lower dose. When on a lower dose of Ibrance (75 mg) it worked well for 4 plus years with minimal side effects. Do you use a special cream for you hands and feet?
I haven’t had hand & foot syndrome yet but as a precaution I have been using Udderly Smooth with 20% urea or Aveeno cream with Colloidal Oatmeal twice a day. My feet have never been so soft..
I take 3-500 mg tabs in am and 3-500mg in pm daily. On for 14 days then off for 7 days. The Udder 10% & 20% cream wasn’t working. I started using it as soon as I started the Xeloda but by my 4th round I noticed spots of peeling skin in my feet (my hands are fine). I got an Rx for Urea 40% lotion and that seems to be working great!
I had a bad reaction to Xeloda after only two tablets. So I am not a good example. I have read on this site of many people doing well. As too research, save yourself time. I always check John Hopkins, or Mayo or your National group. If it is happening they know about it. Don't bother with the rest. Remember to lower the dose. It is just as effective. I have a very pragmatic approach to this treatment and too life. Be sure to get a second opinion from a good source. It helps tremendously.
June, thanks for the tips on research and dosing and second opinion. I’m starting on 2000 mg a day which I believe is lower than suggested. Sorry this Med was not for you, what did you go on next since Xeloda did not work for you?
I'm on it, going on my 3rd cycle. First cycle was rough as the dosage was too much. Once regulated, it's no too bad. I was on ibrance and fulvestrant but did nothing for my liver, that just progressed. So far 2 cm healed. Stable at last weeks CT scan.
Deb, thank you for responding. I’m hopeful after reading the replies that I can tolerate the Xeloda. It’s very encouraging to hear your tumor has responded. Yep, prayer and staying positive and hopeful is the way to go. 💕🌺🙏🏻
I've been on Xeloda for 7 months and once we adjusted to a lower dose it's been good. I agree that the hand foot thing is annoying, but seeing my numbers come down and energy return (after a year on Ibrance/Faslodex) feels great!
Hi Debbie - my first dose on Xeloda was 3000 per day, one week on and one week off. Now I'm on 2000 per day with the same schedule and feel much better with good results. I wish you all the best!
I have been on Xeloda for a year-tried numerous medications plus 2 rounds of radiation before this for 2 years with no success. I take 2500 a day after two reductions (5 pills a day). 2 weeks on and 1 week off. My last scan showed no cancer. So putting up with the hand/foot problem seems okay. Wishing you good luck!!
Hello-when my mom started this few months ago we were worried. The Ibrance had been rough for her white count was very low and several times she have this skin , scalp rashes. The Xeloda makes her tumor marker down almost halfway from 800ish to 400ish. No severe adverse effect per her. I was able to take her for a 12 hours rode trip to Santa Monica, Santa Barbara and enjoy the beach walking without shortness of breath. Love to see her enjoy visiting her 92 yr. brother. One day at a time.
So thankful for your input. Glad your Mom is able to travel and enjoy family. It’s so important. I start my Med tomorrow. I think once I get going I’ll be ok 👍 Debbie
I am just going on it because the tumors in my liver growing quickly and new ones coming so waste two months of my shorter life bc of the side effects.
She is giving me Xeloda. For one week, no meds YAY. It will then go to a speciality pharmacy and they mail it to me.
She said it would be one week and one week off. Then I asked about what if it is not working....when can I expect to die. This was her reply. Would you feel better? I did tell her to tell me the truth I have to plan for someone to pick up my body and I have a life insurance of $7,000. I am overwhelmed.
She said if I stayed in my rented apt., I will still to get very very fatigued and go into a coma. I am done, I think. I do not want any of my small short remaining time to be spent feeling horrible and having all these massive effects.
I just got to plan for some funeral parlor to pick me up and do a direct cremation. Since I have already stated what I want on the DNR, then I will not need a advanced care proxy. I am upset with her (and more so her husband) and I no longer want on her there so cant I just do what I wish.
HiI am on cycle 3 soon. I had 2 cycles and fatigue the worst but the second cycle my feel swelled right up then went down on week off. I am getting an extra week off with a oncology telephone appt Wednesday to discuss dosage. I’m on 4900mg per day. I think it’s way too high so hopefully next week will start a reduced dosage. Reading the posts on Xeloda there is so much variation as to dosage and oncologist initial dosage. I have never had swollen feet and was told it was the heat which is crazy as on the week off they immediately went back to normal and it was hotter. I was concerned re heart issues so refuse to take any until oncology review it next week then start again cycle 3.
Curious. How many pills is that amount per day? I am already extremely depressed that the tamoxifen and afinitor did not work and my cancer continued to grow in my liver.
So now this generic version of Xeloda. she said 8 pills per day (twice a day four pills) and a week on and a week off. It seems like alot of pills (I do not know what the dosage will be).
She told me to stop the tamoxifen and afinitor since the cancer spread anyway so I am awaiting the Xeloda. But this week with no major heavy duty drug has been wonderful and the thought of dealing with fatigue and whatever that hand/foot syndrome is and she also told my my fingernails may turn black, I am beyond depressed.
She said if I stop treatment or if this drug does not work to stop the spread in my liver, I Have 4-6 months left. Because I have feeling good now, the thought of returning to that kind of fatigue and other side effects, I am almost thinking no more treatment. I would have to spend the remainder of my time feeling sick.
Hi there14 pills per day. 4 x 500mg and 3 x 150 mg in the morning and the same at night.
Far too high dosage spent Friday night in A and E with a temp of 38.2 and combined with feet swelling and fatigue no way am I taking that amount again.
Thanks for sharing. That is a pretty high dose, but I know each treatment is different for everyone. My oncologist started me on 1000 twice a day. I had asked to to start at a lower dose. Have only been on it 3 days so it’s all new to me. I hope they can lower your dose to make the meds more tolerable.
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