Xeloda: Trying to find post on... - SHARE Metastatic ...

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Xeloda

Barb5
Barb5

Trying to find post on experiences with xeloda forget how to do that can anyone help me out? Wishing everyone a Great day today 🥰

42 Replies
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Hi.

There's a search bar in the upper right hand corner (above the pictures). Enter "Xeloda" and hit enter. You can also try "Capecitabine", which is the generic form of Xeloda.

I've been on Xeloda since February 2019 with some good results and manageable side effects thankfully. Let me know if you have any questions.

Selmac
Selmac in reply to barbarac76

Hi, kind of butting in here, but have a question. I started Xeloda 2 1/2 weeks ago. 1 week on, one week off. I started the cream they sent on day 1. Within that week I had hand foot syndrome in my hands. I used the cream after every hand wash or whenever I got my hands wet. They have taken me off it until I see the Oncologist October 1st. They will lower my dose and want me to heal. My hands aren't as bad but still look wrinkled and very slight and small skin pieces. Can I get through this and take xeloda? I'm just about out of options.

barbarac76
barbarac76 in reply to Selmac

What is your dose?

Selmac
Selmac in reply to barbarac76

The one week I took it 500 mg tablets. 4 in morning and 4 in the evening. I dont know what they will lower it to.

barbarac76
barbarac76 in reply to Selmac

I started lower than you - three 500mg tablets in the morning, three at night. After six months, when the foot part of hand/foot syndrome got bad, my oncologist reduced by evening dose to two 500mg tablets. I'm also one week on, one week off.

I haven't really experienced problems with my hands like you have. They get red and dryish (especially the fingertips), but nothing too severe. I have, however, had problems with the soles of my feet. I manage it by reducing friction-causing activities (walking, hiking, aerobics) - I limit these kind of activities. I also soak my feet in cold water after and then apply lotion. I have been using Udderly Smooth extra care 20 (it contains Urea, which is supposed to help).

I remember reading that just as you should avoid hiking, jogging, etc, to prevent the problem with feet, you should avoid activities that cause friction in your hands (any activities where you are tightening your grip around a tool like in gardening, cutting vegetables, etc. for an extended period of time) I never really understood this as a viable recommendation - kind of hard to get through the day without causing friction on the hands.

One more thing - at the time when my feet were really bad, I took an extra week off until they recovered. So, yes, it is possible, to recover from this side effect and move forward. Hopefully, with time off and a reduction of dose, you will have the same outcome. I hope it works out for you.

Barbara

Selmac
Selmac in reply to barbarac76

Thank you so much. I do use my hands constantly. Keeping house, scrubbing toilets and showers, running the sweeper, cooking which includes opening jars, doing dishes constantly. My husband doesn't get it. He loves me and doesn't want me to give up but no empathy. He just thinks take the pills and I should be ready to do everything I used to do. Thank you so much for your time. I appreciate it.

barbarac76
barbarac76 in reply to Selmac

I hear you about your husband. When I was first diagnosed, the oncologist told my husband and me that there were women in my exact situation (type, extent, and location of MBC) who lived 10+ years, but then there were others... (she didn't complete the sentence, but I knew what she meant - they weren't as lucky). Well, my husband, who I believe loves me and wants the best outcome for me, only heard the 10+ years, which he immediately translated to 20 years, so he simply cannot comprehend how living with MBC is a physical and emotional burden.

kearnan
kearnan in reply to barbarac76

Confused. I keep reading about this hand/foot syndrome but what happens. One article I read the lady said her hands and soles of her feet turned black. Does it hurt to walk? I have to be able to walk bc I have to go to stores and I dont drive. I read that is a major side effect. My feet are already swollen. I can't even imagine that they could get worse. That also seems like a lot of pills to take. I really want to stay with Verzenio.

barbarac76
barbarac76 in reply to kearnan

Hi.

I'll start by saying Xeloda, my fourth treatment, has been one of the easier treatments for me. The hand/foot syndrome is annoying and it does impact your activities to some degree, but it's manageable. My experience has been nothing like the woman you described with feet and hands turning black. Towards the end of my on cycle (I'm 7 days on, 7 days off) the soles of my feet and my toes start getting red - the feeling of a sunburn (kind of). It extends into the first two days of my off week. The redness never goes away completely, but I would not describe it as painful.

The redness is caused by small amounts of the drug leaking from the capillaries in your hands and feet, especially when you engage in friction causing activities like jogging and aerobic activities for feet and for hands - gripping any kind of instrument like kitchen and cleaning tools for an extended period of time.

I used to walk and hike for several hours in a stretch within a day. Now, I limit myself to one hour for a continuous walk on flat ground. Walking up and down hills causes irritation. After a long walk, I soak my feet in cold water, then apply lotion. I also bought wider sneakers, which has helped. When I just go for multiple short walks throughout the day, I don't have a problem. It's just the long, continuous walks. It sounds like you go for several shorter walks, so hopefully, you will tolerate Xeloda.

One last thing - the nice part about taking multiple pills per day (I take three in the morning, two at night), is that you can easily reduce the dose if you experience side effects that you can't tolerate.

I wish you well. It's always a tough time changing treatments with the unknowns about efficacy and side effects.

Barbara

kearnan
kearnan in reply to barbarac76

I will find out in November when they do a second CT scan of my throat. They found something two weeks ago in my lungs (I had it spread to my lungs first thus stage iv). But last CT scan they found a tumor or mass that was not there previously. She said they have nothing to compare it to since it was not in the previous scan but the scan will be of my throat only and she already said treatment will have to change regardless and not to worry, she will help me deal with the side effects. (That immediately sent up red flags for me.) I did not want to know more but unfortunately, ran into the physician assistant, Yan (male), who is not supposed to be telling me anything. He likes to think he is a doctor. He saw me waiting to get my injections and said Oh, I heard they found something on your scan and I said yeah, I am going to have another one the day before I meet with Dr. B. and he then said I think she is going to be putting you on Xeloda (I didn't even ask my onco bc I did not want to know.) Of course since he told me (my onco would be furious with him if I told her), I have googled it and am getting severely depressed already from reading about it. I do not drive, stores at not close and I have no friends or family close by at all.

The more I read about it the more upset I get. Hand and foot syndrome. Hurts to walk. It's insane...how does one live like that? I already know I do not want to be on this drug.

Are there any other other drugs that they can use? I do NOT want to be on a highest dose. I am upset that he told me and more upset that of course I had to google.

I had a sense of normalcy that I was getting used to and now its start all over again. I am already upset and knowing that the holidays, will be awful if I have to start a new treatment. Seems like alot of pills to take.

I want to stay on the Verzenio. I do not care. If she told me to continue to order my supply of Verzenio (and why if it stopped working) can I just not continue to take it. The Xeloda stories and side effects I have googled scare me and I have to be able to take care of myself and do the things I need to do without any type of help. It is no quality of life then. And now I am angry at him for telling me. It was NOT his job or responsibility to do so. He likes to think he is a doctor.

Scandia68
Scandia68 in reply to Selmac

That’s the highest dose I’ve ever heard of. I wanted 1000mg in the morning and 1000 at night but she insisted on 1300mg twice per day to start then we will lower it in a few months as a compromise. I do 2 weeks on and 1 off and only had some stomachs cramping during the first two weeks. I was terrified of changing from Ibrance but loving this new treatment.

Selmac
Selmac in reply to Scandia68

That's what he started me on with one week on and one week off. Not on anything until I see him Oct. 1st. He wants my hands to heal and he is going to lower the dose.

kearnan
kearnan in reply to Selmac

What happens to the hand and feet.

Selmac
Selmac in reply to kearnan

The hands and feet get hot and start peeling skin. Can also take your fingerprints away. It can be very painful.

Scandia68
Scandia68 in reply to Selmac

Hi, ask your oncologist if she can give you Celebrex, it helps with the side effects of Zeloda. Google it so you have some info to give them.

Hello may I know what side effects of Xeloda does Celebrex help with?

link.springer.com/article/1...

Many thanks for sharing the article!

Selmac
Selmac in reply to Scandia68

Thank you.

Barb5
Barb5 in reply to barbarac76

Thankyou

Barb5
Barb5 in reply to barbarac76

Thanks

Hello. I will be starting Xeloda in about a week’s time but on a metronomic dose which is 500 mg twice a day. This is in combination with Aromasin. I don’t know if it will have less side effects (I’m hoping and praying🙏) so I will let you know how I get on.

kearnan
kearnan in reply to MyMiracle13

No falsodex injections? I am ER+. Please let me know your experience with it. I will come back on to check. Thanks. I would rather know all the side effects, really the bad ones. I wish just one of these damn meds would make me lost weight.

MyMiracle13
MyMiracle13 in reply to kearnan

I had Faslodex with my Ibrance for almost 2 years before progression so now I will be on Xeloda with Aromasin

LOL. I just came on here (after being off for a week or two) bc they found something new on my CT scan two weeks ago, my onco called me at home the very next day. I have to have another CT scan of just my throat in November. the day before I meet with her bc they have nothing to compare what they found on my lungs with previous CT scans thus the scan of just my throat so that they have something to compare it to. She called me at home the day after my CT scan which was two weeks ago. She said "worrisome" and "change of treatment plan and I will help you with the side effects" which upset me bc that means she knows or expect side effects to be unpleasant.

So I came back on this board and used the search engine located on the top upper right hand side and your post came up. I was not thrilled with what I read off this board. This change will be coming in November. I also felt that she was choosing her words carefully and that she was holding back something but it may be one of those things that she does not want to tell me until she is certain. So I will know more when she has the results of my CT scan the day before I meet with her so that they have something to compare with from what the discovered on the scan two weeks ago.

This will now be my THIRD line of treatment in three years. Not happy about the change that is coming and what I am reading about the drug.

Do you know why your onco is putting you on this specific drug? So I did a search and your post came up first. Strange coincidence that you are also looking for info on this drug. Let me know if your onco puts you on it. I'm just upset that this will all happen before the holidays. I hope whatever reason you may be given this drug that it works for you. I am not happy with what I read.

Barb5
Barb5 in reply to kearnan

I hopefully won’t be changing treatment but Xeloda was his suggestion if anymore progression had small increase in one spot others remained the same so for now staying on Verzinio Faslodex and Xgeva

kearnan
kearnan in reply to Barb5

Even if there is slight change, it is not possible to stay on Verzenio? I finally got my place down to a place where for the most part, I am okay with it and the thought of starting all over again is really depressing.

Barb5
Barb5 in reply to kearnan

I hear you starting new treatment and dealing with new side effects and worrying if it’s going to work or not is awful but I guess it’s our new way of life and hopefully we will deal with it for many years and it makes it a bit easier having each other on this site. My oncologist said most lesions stayed the same only one increased and seems to be contained so for now staying on Verzinio Faslodex and xgeva. Hoping your new treatment goes well with few side effects.

Have-faith
Have-faith in reply to kearnan

I have been on xeloda for about 5 months. I was not happy when I knew I now had to go on my 4th treatment plan in 3 years. It is the journey we are on. I know I will eventually go on other treatments too so I try not to get to worked up. As for side effects - everyone is different so your doctor can only say what others have experienced. You may have very few, if any, side effects.

I was given the original prescription of 4 pills in the morning and for at night. 4000 mg total for 14 days straight and off for 7. By third month one pill was dropped as I did have soreness on my feet. Vaseline rubbed in your feet with a cream wrapped in saran wrap (plastic wrap) socks over this before bed does the trick to keep feet moisturized. If you put just socks on and no plastic, cream gets absorbed by socks! For hands I bought cheap white cotton gloves. Sometimes at night I throw cream and the gloves on. Not a sexy look these socks and gloves, but it is what I have to do. You will see what is best for you. Good luck and reach out if you have more questions. Faith

kearnan
kearnan in reply to Have-faith

I already as soon as I get out of the shower, put loads of vaseline on my feet and then cotton sucks. My feet and my leg are already so so dry and have some sort of rash on them that get so itchy. The thought that it could even gets worse seems impossible.

Have-faith
Have-faith in reply to kearnan

You may want to get a cream for dry itchy skin from Eucerin company. Over the counter in a drugstore. I used this when I felt itchy and it worked!

Barb5
Barb5 in reply to Have-faith

I use Eucerin brand body lotion also it’s great my skin is so soft from it I actually bought it because store didn’t have the one I was using and now I like this one so much better not expensive either!

Have-faith
Have-faith in reply to Barb5

Oh good! Glad Eucerin works for you too!

I’m on my 4th line of treatment in 2 years....Faslodex and Afinitor...and it seems to be working (fingers crossed!) but I was told the Xeloda would be my potential next thing. My last appointment with my doctor (this directed to Kearnan) she seemed sad and stressed, and I kept thinking it was about me (though the news she had wasn’t bad, just equivocal)but then comforted myself by thinking that they have bad days too....

Until these posts I had mostly heard good things about Xeloda!

kearnan
kearnan in reply to Topood

Maybe I am reading the wrong articles. Even with Verzenio, I stopped on my own twice. The abdominal pain was making me cry besides the severe diarrhea. I tried the 150 mgs. and stopped after a week and no difference with the 100 mgs. Finally, she put me on the 50 mgs. twice a day and I loved there was no break like with the Ibrance. That week I never felt so sick and that never got better. I need to try and read some better articles about Xeloda. From what I am reading now, I do not want to be on it. But I will wait and see what the CT scan in November shows and what the comparison is. I can only hope that it didn't grow or move or change shape. But either way, my onco said my treatment has to change.

There was something about the way she was telling me. Long pauses, careful choice of words using the word "worrisome" but I know her and she would NOT tell me anything on the phone until I have another one (scan) just of my throat so that they can compare the two scans to see if they have grown or changed shape. Something about a new tumor or mass in my lungs but I already had it in my lungs but I felt she was holding back. I think I may ask her to give me another three months on it and then see after that scan if anything has changed unless this closer scan in November shows major growth. If not, I do not want to change treatment. Where are you reading good things about the Xeloda. Because I must be reading the wrong articles, bc I cried like a baby this morning. I just wish the darn PA had not said anything to me. My onco would be furious bc if he has gotten in trouble before, but I am not a tattle tale LOL.....

Have-faith
Have-faith in reply to kearnan

Many people have great results with xeloda! As mentioned before side effects are different for everyone. Xeloda is an oral chemo. I feel lucky i can just pop pills at home and not have to weekly for IV! This is just my view. Good luck!

Topood
Topood in reply to kearnan

If I didn’t read it here I read it on the Afinitor group on facebook, that I think you can only go on if you’re on Afinitor now....but wherever it was, it seems as if most people’s response was positive.

kearnan
kearnan in reply to Topood

I do not even know what afinitor is? I was first on Ibrance (only three months, total disaster), then Verzenio. I have been since day one on Falsodex injections, and then they added xceva(?) for bones strengthening once holes were found in the lower part of my spine.

Topood
Topood in reply to kearnan

I think Afinitor is like Ibrance in interfering with pathways that increase the growth of cancer cells. It generally has worse side effects than Ibrance, in fact my doctor is giving me a week’s break now because I have mouth sores (even though I’m on two prescriptions to protect my mouth!) and a serious rash on my face. But I feel as if it’s working! She says I can eventually alternate days or go to a lower dose.

kearnan
kearnan in reply to Topood

It's true. They have bad days also especially if maybe they have to tell a patient it spread and the patient cries or goes hysterical. That has to take a toll. I never cry at the center. I am pretty blase, but I did cry today after reading about the side effects, but I am breaking my own rule and not going to worry, until I am sure I have something to worry about.

MyMiracle13
MyMiracle13 in reply to Topood

Hi. How are you finding Afinitor? What dosage are you on? I have a choice of Afinitor or Xeloda but I was thinking that Xeloda had less side effects so chose it. Have you experienced any side effects with Afinitor such as mouth sores? Maria

I am tired, and had pretty bad diarrhea the first 3 weeks...then my doctor said it makes some people lactose intolerant, so I cut out about 75% of the milk products I normally eat and now feel much better that way! I am short of breath, but I think that’s because I have “infiltrate” (which may mean cancer) in my lungs, and did before I started Afinitor. It seems to have reduced my axillary lymph nodes, and my breathing is a little better, but we’ll find out about my liver and bone mets when I get scanned in October. Now I also have a bad rash on my checks, but I also had that with Perjeta (and the mask covers it up!). I am still walking up to 5 miles a day, but have to make sure I take 3 or 4 pretty substantial rests daily...overall my quality of life is pretty good, but if I still had to work it would be a real challenge! My doctor says that if Afinitor/Faslodex doesn’t work Xeloda is my next step.

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