All about Xeloda
Comments
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MameMe--I find my feet are pretty sensitive on Days 12 to 15 and then they recover pretty quickly but my oncologist is constantly monitoring my symptoms and slowly reducing my dose. I started at 4000 mg a day and am down to 2500 a day now that I'm starting my 6th cycle. I'm really hoping to manage the side effects because my latest scan showed the Xeloda is working well in decreasing my cancer.
I read the article that Giovanni posted somewhere upthread about what helped with HFS and as a result have been using Aloe Vera oil on my feet and hands which has really helped with the peeling and sensitivity although my feet still get red and a little swollen. I think you may have to curtail your longer walks for several days of each cycle but hopefully you can find a dosage that lets you keep up your exercise on most other days. Do you like to bike at all? That might be easier on your feet on the bad days.
I also took in the information that Giovanni posted on a Uridine based cream that is used in Europe for HFS and am waiting to see if my oncologist OKs it. Then, of course, I'll need to see if I can find the ingredients to make it up. He said it really helped his wife's feet.
From what I understand, it's crucial to stay on top of the side effects so you don't have to delay your next cycle so I think you were smart to take a rest. Hope your feet recover quickly and you can back outside doing what you love!
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Lovielovie,
I'm scared of a dose reduction. When I was on Taxol, things were going great until I started the 3 weeks on, one week off protocol (instead of always weekly). That's when I started failing Taxol.
So . . . I am loathe to mess with a protocol that is working.
Now, if I could just stop picking at my fingers!
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Ensure is loaded with sugar, which feeds the cancer; I find I need it for a pick-me-up sometimes, so I now buy the diabetic formulation, very low in sugar.
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I am new to the boards, and have questions about Xeloda. I have been on several hormone therapies, and am now on Faslodex. My oncologist and I think it is no longer working because of new bone met pain, and he wants to put me on Xeloda. I am very frightened to do chemotherapy again.
I am afraid of losing my quality of life, which is very good now. I was in abject misery when I was on adjuvant chemotherapy in 2003, but regained about 95% of my function. However, I saw my spouse crash when he tried a chemotherapy (prostate cancer) and although he only did two rounds, he never regained his former level of QOL, in fact he stayed at the low level the chemo left him at. The last few months of his life were misery. I fear that if the side effects of Xeloda are intolerable, and I stop, I will not regain my quality of life, as happened to him.
Does anyone know anything about this? If you stop Xeloda, do you go back to your previous level of quality of life, or are you permanently damaged by the Xeloda?
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Thank you, Lovie! I will try all of what you talked about. I so want this to work, and I so want to have a reasonable life, too.
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Stage IV in Mon.... Boy, those are my exact questions. How to call it when I don't know how to judge outcome, etc. I would look at the differences between your chemo and your spouse's, first. How did he feel when beginning the two rounds? What damage had cancer already done, if any? Some infusions are just awful, some not so bad. I noticed that on Taxol I had less se' s as the weeks went on. My problem with Xeloda now is happening within the first two rounds. Maybe a dose reduction will resolve the hf syndrome, who knows. I certainly want the best QoL I can have. I hope some others chime in on this as its an important topic.
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Here's a link to an article from 2011 about the effectiveness of Xeloda even in doses as low as 1000 mg twice a day: http://mbcn.org/images/uploads/DoseAdjustingCapeci... The name of the game seems to be finding a dose for each individual that allows a decent QOL since if Xeloda works, it can work for years.
My own experience after 5 cycles is that I recover relatively quickly in my off week but I'm in constant contact with my oncologist's nurse about any worrisome side effects and stopped one cycle a few days early when my feet weren't doing well. And, for my last cycle they gave me an extra week off to let my stomach recover. I find each cycle is different. The first couple of cycles, my feet did the worst. The last couple of cycles, it's been my stomach but my feet seem to be doing better. I had a scan a month ago that showed my cancer had significantly decreased after just 2 1/2 months on Xeloda even with not completing one cycle and reducing the dose several times.
Stage IV in Montreal--you might talk to your doctor about starting at a lower dose since the article indicated people did fine when starting at a dose of 1000 mg twice a day. I started much higher (2000 mg twice a day) and have had to cut back because of the side effects. Another option the article mentions, and that I've seen people mention on this thread, is taking the medication for 7 days followed by 7 days off (instead of 14 days on/7 days off).
Unfortunately, you won't know how the drug will effect you until you take it and it's certainly possible you won't have a hard time with it or will be able to eventually find a dosage that works well for you. Also, it's been a long time since you did the Adriamycin and Cytoxan and it sounds like you're doing pretty well now. My understanding is that those chemos are about as heavy duty as they get and that Xeloda is much less toxic. I know it's scary to try something new. I hope it all works out well for you.
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Well, my feet peeled for the first time after the 4th cycle ended (last week). They are still peeling, but not as bad. I think the dead layer is off. Will the peeling happen every cycle now? Or does it come and go? My feet don't hurt as bad at least, as they did before they peeled. My hands haven't peeled yet (knock on wood!). I lotion both my hands and feet many times during the day with Udderly Smooth, and at night I have been using Aquafor. I am also taking 50mg of B6. I am getting a rash on my arms too (doesn't hurt or itch). I get headaches too off and on (I never have headaches normally). I also get fatigued in the afternoon. I did get nauseous the first week I started Xoleda, but my oncologist gave me a perscription and it worked. I didn't have the nausea again.
Stage IV Montreal-I was started on 3000mg twice a day, but they later lowered the dose to 2000 twice a day because of the pain I was having with my feet (I could barely walk for a week after the 2nd cycle). It helped. I too was afraid to go on chemo (I never had it when I was originally diagnosed in 2005). The side effects are not supposed to be as bad as the other chemos. I am able to get around and do most things I did, before this disease came back 2 1/2 yrs ago. My local oncologist does the dosage by your height and weight, and my Boston oncologist starts the dose high and then lowers it if there are issues (we used the high to low dose). Ask your oncologist how they do the dosing. Good luck!
On a good note, my tumor markers have come down again to 180 (they were 601 two cycles ago!). I will be getting my scans done a week from Monday, and hopefully, they will show the tumors have shrunk.
Lynne
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Lynne--just wanted to let you know that once I started using Aloe Vera oil on my feet this last cycle (no. 5), the peeling on my feet went away. Could be just a coincidence but the Aloe Vera oil made my feet feel better in general. Up to then, I had peeling on my feet Cycles 2, 3 and 4.
That's great news about your tumor markers! Hope your scan shows equally good news.
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Me too with the headache & red peeling feet
And my onc wants to up the dose? I'm already on 4000mg/day...
Time to rest up & slather my feet & hands with cream. I wonder if I can get aloe Vera oil here in nz? Will have to look.
Take care all
kt
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Dear Lynne and GemStateGirl - thanks so much for your replies to my questions about Xeloda. It will help me in making my decision. I'm really happy I decided to join this discussion group - my first time, although I had read Xeloda posts before. See my oncologist Tuesday.
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Xeloda rash. I am about to start my 10th round of Xeloda tomorrow and since the first round I have this rash which we thought at first was from the sun but it is all over my body and does not seem to be caused by the sun. It improves slightly on my week off but never goes away. Oncologists thinks it is an allergic reaction and has asked my dermatologist to do a biopsy of it next week. She said that the skin reaction does not improve with dose reduction. She said that if it is an allergic reaction, I could react as I did with Aromasin ( hives and breathing problems). Has anyone else dealt with this? Meanwhile I will make sure I carry my epi pen and use lots of anti itch cream along with lotion.
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Chemo brain - do people get chemobrain with Xeloda? Are people able to work full time on Xeloda? From reading the posts it seems people do work while on Xeloda. Any problems with concentration, functioning?
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I think we do get a bit of chemo brain, personally- i find myself forgetting a lot of stuff. I'll go into a room & forget why I went there etc...
Plus the dizziness/spaciness from time to time.
I only work part-time thank goodness. But I have lots to do at home, & find I need to pace myself as I have fatigue, get tired & grumpy very easily.
But I guess it beats progression
so I will persever - as far as se's go its not too bad..Crone- I don't have a rash- is it itchy? & you've had it almost from the start? That doesn't sound fun. Hope you get some answers soon.
kt
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Question for you ladies. I have just finished my 2nd cycle of Xeloda and have been experiencing pins and needles and numbness in my fingertips but mostly in my feet. There is no evidence of redness or peeling. Is this HFS? I am not seeing my onc until next week.
PS. I agree with kt. I think you do get a bit of chemo brain on Xeloda. I haven't noticed any differences since I switched from taxol to Xeloda. I am still searching for the name of things. Often everyday items but not things I use regularly. My daughter is visiting and you should hear me trying to describe where in the kitchen she can find something. I don't work any more but I think that I could cope if I was still in the workplace.
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Good morning all
I will be starting this medication at the end of Oct due to a "mixed" PET scan results. Is there a summary somewhere of tips and tricks? How long has this med worked for you? What questions do I need to discuss with mo? Needless to say I'm scared to start a new tx yet I'm scared NOT to try a new tx if that makes any sense?
Maureen
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<aireem813- You can find all sorts of information in this thread. Xeloda symptoms are different for everyone. I will try to summerize some things.
always take Xeloda with food (they say withing 30 minutes, but I just say with a stomach with something in it)
Take Xeloda 12 hours apart (I try to do this but just try to remember to take it at the same times every day. it doesn't ahve to be exactly 12 hours, but try to keep it close to that)
First few cycles ( or longer) Xeloda can cause nassau. Have your oncologist perscribe something for this.
Fatigue- you will suffer from fatigure on this drug. Some people have tried ritalin to help with this. See how you do. If it is a problem, talk with your doctor
Hand/Foot syndrome- this is the big one everyone talks about. it can take effect anytime. It caused peeling of skin, numbness, cracked and dry skin. Can get so bad you can't walk. Things to do: keep lotiion on your hands and feet to keep them from cracking and peeling. I don't have a favorite so see what others have to say. Stay off feet as much as possible. Avoid having hands in warm water for prolonged time (like washing dishes). don't be afraid to talk with oncologist as feet and hands get sore. they can adjust meds or give you a week off.
Talk with oncologist if things don't feel right. They can adjust the dose or the schedule that you take the Xeloda on. I have been on Xeloda for almost 2 years now (22 months). I had to decrease my dose once and have had to take 2 weeks off to let me feet recover. some people switch to a 7 on 7 off schedule from 14 on 7 off. Big take home is talk to oncologist if something is bothering you. There are options.
Rash- you might develope a Xeloda rash. I had one on the first few cycles I was on Xeloda but haven't had one since. Some people develop it later. I used creams and benadryl to help.
the big D or constipation. I developed diarrhea but some have constipation while on this drug. So be aware that your bowls habits will change. I manage my diarrhea with immodium when I need to.
That is most of them. I think. Ohters please chime in especially about the H/F and how you take care of it.
hang in there. xeloda is usually effective for most people. I found the SE less harsh than other chemo drugs I have been on. Good luck
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thanks for the smart left foot forward. I'm nervous to start another chemo. I don't like change especially where the cancer is concerned. I only was stable with taxol combo for 7 months. That doesn't seem like a long time for chemo
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Maureen,
Sorry about your mixed results from your gemzar/taxol combo.
I understand your anxiety about starting a new chemo. Taxol failed me after 5½ months. When I was switched to Xeloda, I worried about what new side effects I would have. Everyone is different and although you can read about the common side effects it is not the same as experiencing them. You also have the worry of 'will this one work' and if so for how long. All you can do is try the new chemo and see what happens. None of this chemo crap is easy to deal with.
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I will start Xeloda this coming Wednesday. Have never been on any kind of chemo before so I'm anxious. Particularly worried about the hand and foot thing because I'm a modern dancer and dance barefooted. Before starting whole brain radiation I spent hours and hours researching side effects of both the radiation and steroids. In the end, they didn't even put me on steroids and the only real side effect I had was fatigue. I didn't take Tamoxifen after my mastectomy because I was scared of the side effects. Then I became Stage IV (who knows if I wouldn't be here had I taken Tamoxifen) and put on Tamoxifen and Zoladex. Didn't have a single side effect from it. Keep telling myself that there's no point in getting worked up because each person is different. My reaction could be better or worse. Just can't seem to listen to my own logic.
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I am on the 4th cycle and I havent had any signs of HFS, but I am really exhausted, so tired that I can't even go shopping without coming back feeling very weak and needing to lie down. I wanted to work a couple of days a week, but think that wont really be possible. I had a scan and I appear to be stable, though I really would love to be NED, but I am not too confident about that as I have never been NED. I think we all have different side effects and it all depends on how our body reacts. I have never felt so tired and I have done taxol, halavan and others that I have now forgotten the names of them. Good luck everybody.
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Sammiryan, There is something about this Xeloda which is making me very tired, too. Much more than I was on taxol.
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Springwatch, do you feel really weak? I can only walk to the shop and then I feel as my blood sugar has dropped and I have to grab a chocolate bar or get a sugar fix.
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I haven't had to grab a sugar fix but I do feel very weak and I spend more time sitting and resting then I did on taxol. I am hoping that my fatigue will lessen as my body adjusts to the new chemo. I have only had two cycles. I did feel better on taxol after I had been on it for sometime.
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Hear hear on the fatigue! I find it more frustrating than the HFS because I just want to get on with things but I can't. I find I have to pace myself on everything- take lots more rests or I end up in bed like now because I tried to do too much.
My eyes are really sore at the moment. Aching. I do have night time oily drops & day time ones but I keep forgetting to use them (chemo brain?- grr)
Thank goodness today is a holiday here
Work tomorrow!kt
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I thought I was the only one struggling with the crushing fatigue. I've never felt this way in any of the other drugs. And it lasts so long. I've only done two cycles and not completed either if them. I have been off for ten days now and still feel exhausted and miserable. No appetite and feet are so sore. Is it possible for it to get better?
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You can talk to your doctor about taking something to combat the fatigue like ritalin. Some people say it really helps the fatigue. I do think your boides will adjust slightly to the medicine. I will say however that fatigue is what I battle every day. I have learned to pace myslef and forgive myself for thte things I can't do. Sometimes that is very hard to do. I have had more than one time where I have cried because I want to get off the couch but really I can't. Hang in there.
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Hi all, I've been away and it was NOT a vacation. I had an intestinal obstruction (turned out my guts were all twisted and knotted and set to do me in). So I had surgery and was in the hospital for 2 weeks. I've been off the Xeloda - the obstruction reared its ugly head during the week off. Onc said we'll see when we start again according to how I'm doing. He wants to talk to me every other day. I'm hoping to start on Sunday since I don't want to be off treatment for too long. The one good thing is that the abdominal CT that found the obstruction also scanned the liver and I'm stable. So bring on the Xeloda!
Onc refers to the whole thing as an ambush.
Leah
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since I started this drug I never had a good day. I just hate it. I have my scans this week we will see if this medicine did good or more damage. I never hated any med as much as Xeloda. I would not mind as much if it did good but I really doubt it. Since i started this drug I have no life at all. I can't do anything for myself anymore. If it was not for my husband I don't know what i would do. It's going on cycle 5 does it get easier???? Anyone help...,
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I'm about to start my third cycle Stella and I agree with you 100%.
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