Xeloda, tell me some good stuff

So, my oncologist says may next step may be xeloda. Have any of you had good experiences with this drug. I've read about the hand/foot stydrome. I'm wondering about how extensively diarrhea hits. I just went through 8 months of that with sutent. Right now I am sure enjoying eating (and eliminating) normally.

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Hi, Andrea! I've just come off of Xeloda after 2+ years. For me the hand/foot syndrome was the worst of the side effects. I really didn't have to cope with much else except for fatigue. Hopefully, you won't have to deal with too many SE's either!

Take care, Joanie

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Hi Joanie,
I hope it works out for me. Right now I'm on coumadin, and I hear you aren't supposed to take that with Xeloda. . . so I need to get off the coumadin first, I think. This may take a while as I'm recovering from congestive heart failure caused by the last drug I took. The doctor says that xeloda does not create heart problems. That's good.
How are you doing?

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I am on coumadin due to atrial fibrillation and I also take Proponenone and Nifedical (beta blocker and calcium channel blocker) and Zemeda for breast cancer metastasis to bones (oh joy) and Arimedex plus a few other pills (I hate to take pills) so is this new drug you are taking an alternate to Arimedex? Thanks for your assistance.

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It's been a challenging few months. I had a small progression on my right shoulder that required rads. Then my old port had to be removed and a new one placed so I could receive Doxil. Of course, before starting the Doxil it was scan after scan. So, all in all, business as usual....and I did get a month long break from any chemo while all that was going on and that was nice.

Hope things go well with coming off the Coumadin and starting Xeloda.

Joanie

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Bella, No, xeloda is not an alternative to arimidex -- which is a drug somewhat similar to tamoxifin that suprresses estrogen. My cancer is no longer estrogen positive, so xeloda is not a drug that gets rid of estrogen. Just what it does do, I don't know yet. I hate to take pills too.
Joanie, sorry these past months have been difficult. It seems this is the way of cancer. Difficult times with some breeathers. Prayers for you both.

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My partner takes xeloda (2 pills in the morning and 2 pills at night). She takes this along with Tykerb (3 pills a day in the morning). She is tolerating this dosage very well but her tumor markers do go up and down, which from all that I have read is normal until the drugs begin to kick in and do their work. The dosage that she takes is not the maximum because she had bouts of diarrhea. If you have a good oncologist, she or he will adjust your dosage so that it will not cause this and therefore the result will be that it stays in your body and is not evacuated before it can get to those cancer cells and destroy them. The hand/foot syndrome is caused by capillaries breaking in your hands and feet. Remember that capillaries are delicate little vessels which deliver these drugs and sometimes the drugs break these therefore the result is this syndrome. And also remember, you use your hands and feet so that puts them under stress and makes them a bit more vunerable to having this. However, talk with your oncologist. Remember, you body needs to find the right dosage to do the work. You may not need to have the full dosage that is usually perscribed, but that is up to your doctor and you. I have talked with oncological pharmacists about this since my partner went on this drug. I wish you the best with this. By no means am I saying that xeloda and tykerb is a walk in the park, but tykerb is a wonder drug which was in clinical trials but was taken off before the trial was finished because they found it so effective in tumor reduction that they could not ethically keep it off the market. Once again, good luck.

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I just finished my 4th round of Xeloda after eventually failing on Taxol. I had 7+ tumors in my liver that were growing rapidly. After 3 rounds of Xeloda I had a scan. Xeloda shrunk everything, only 4 tumors are now visible and they have all shrunk. The side effects have been just insomnia and taste alteration. It's been much easier to tolerate than Taxol. My doctor said many people do well on Xeloda, I'm hoping this is true for you too!

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I have just completed 3 rounds of Xeloda but I do not have results yet so I am glad to read BethA's comments. As far as side effects, they have been very mild - Nausea in the morning, dry mouth, and fatique. I had one bout with diarrhea when I first started but I was on 4000mg a day so they reduced that to 3 pills in AM and 3 pills in PM always after a meal. I also get Zometa every 6 weeks.

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Just for your information Ahaha,
Xeolda is an oral chemotherapy http://www.xeloda.com/
check out this site it may give you a few more answers, I am on it at the moment but have only got through the first cycle which was taken at the same time as taxotere and I had a lot if toilet troubles with that so waiting to see the onc for a decision, my cancer is moving very fast, so am hoping it works Love you Jennifer

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Ahaha,

Welcome to the Xeloda club. I have been on Xeloda since May and I haven't had any of the symptoms except fatigue and low white blood counts. Because of the low wbc my dose has been reduced from 3,500 mg a day to 1,500 mg a day. I am also on a one week on and one week off schedule which is new but has some clinical support in research studies that shows it appears to be effective and with fewer side effects then the old two weeks on and one week off schedule.

I had scans in Nov after being on Xeloda for 6 months and spots on my spine are lighting up but nothing in any new places and my Circulating Tumor Marker results went down from a 3 to a 2 so the goal is stay with the Xeloda and recheck in 4 months.

I hope I can stay on Xeloda for a long time. It is much easier on me then anything else I have been on. (FEC and Taxol). I have had no GI or skin issues, so everybody is different.

I wish you the best with this treatment. I read about your heart issues and am so glad to see you recovering.

My goal is to try all the light weight chemos before I have to go on sometime really toxic again. I have been triple neg from the get-go so no hormonals for me. I think Xeloda is well tolerated by lots of people so lets hope you are in that category. Some people stay in it for years.

Much love and best wishes your way,

Shanti

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I am glad to see you are doing better! I was on xeloda for about 4 months. I was disappointed when I had to change due to progression because I tolerated it pretty well. I did have problems with my hands and feet and had to start and stop a few times, and adjust dosage but other than that I felt pretty well. My biggest advice is to keep your hands and feet well moisturized all the time, even when they feel fine. The best of luck, I hope it works for you!!

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Yesterday I was at the anti-coagulation clinic which supervises my coumadin for blood thickness. I asked them about Xeloda and coumadin at the same time. The answer was that at the beginning this needs to be very closely monitored, but that it is not counter-indicated to take them together. Initially, I would have my coumadin level checked more than once a week.
So far, I've been scoring too low on the coagulation scale; my blood is too thick which can raise the possibility of a stroke. So yesterday, the nurse doubled my coumadin intake and we'll see how that goes.

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Dear Ahaha,
I will give you "all the good stuff" and please keep in mind that everyone responds differently to any given medication. I was extremely lucky, had absolutely no side effects from Xeloda (2,500 mg) for the 2 1/2 yrs on. My oncologist instructed me to take Vitamin B6-100 mg daily to help prevent hand/foot syndrome, maybe that helped too. I did have occasional bouts of the runs towards the end, but not consistently, and the DR. at MSK informed me that a clinical trial there has indicated that one week on, one week off may be just as effective as two on, one off and eliminates most of the side effects as they usually kick in after one week. I read you too consulted MSK. I saw one of the leading BC Drs there, but he did not recommend testing my bones to determine if my mets are still ER+ and switched me from Xeloda to Tamoxifen. I progressed significantly a few yrs back after 2 1/2 yrs on ARomosin. Xeloda placed my disease in remission until a few months ago. Today my ----health plan denied a PET scan scheduled for tomorrow and I am still reeling with anger. Anyway---
Best wishes for a recovery from your heart problems and here's hoping that if you do take Xeloda it works well with few problems.
Linda H

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I was on Xeloda for about 6 months and had nice response to the cancer. You do need to be very respectful of the drug, in that, once you start with the burning in your hands or feet, contact your doctor immediately. Don't try to gut it out, since it will only get worse, since the drug will continue in your system for a day or so. Your doctor may suggest you stop that cycle, then start the next cycle at the regular time. This does not mean that you would need to give up the drug. Are you Her2 positive? Xeloda and Tykerb (Lapatinib) have had really good results when given together.

I found that the "runs" were manageable. Good luck and take care.

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Xeloda tends to potentiate the effects of coumadin. What this means is that you tend to not have to take as much coumadin while on Xeloda. Taking the Vitamin B6 100 mg has been proven to help with the hand and foot syndrome. Another trick is to keep your hands and feet as cool as possible when taking the Xeloda. When your hands and feet are warm the blood vessels are engorged meaning that more of the Xeloda is taken to those areas then if the blood vessels were constricted as when the hands and feet are cool. Hope that makes sense.

I have found over the 11 years of practice that Xeloda is usually very well tolerated. You do have to watch for some mouth sores and tenderness also. Just make sure to report any symptoms right away to your oncologist or nurse so your dosage can be adjusted accordingly.

Best wishes
Eileen

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Dear Ahaha,
Wow, your inquiry about Xeloda has generated lots of responses, which is great for me since I am also taking the drug. I am ER+ and have mets to my bones and liver, and I am now in my fifth year of taming the beast- 10th year of survivorship!

I began a clinical trial in April which pairs Xeloda with Avistan. I have had several reductions in the Xeloda dosage, because of painful feet - blisters, soreness, and callous-type events on the soles of my feet. Strangely, it has effected my left foot much worse than my right foot.

What I have been going through lately (since October) is a series of immune deficiency problems - rashes, a "cold" that kept me knocked out for a week, and now, pneumonia. My lastest trip to MSK's Urgent Care Center was definitely the most dramatic, as I was experiencing stabbing-like pain in my chest so that I could scarcely breathe.

I'm better, but once again, I'm using other people's donated sick time and missing my students. I must confess that I love having time at home.

I wish you well in your new adventure. Definitely, it has helped to lather my feet with a good salve at night - I recommend Burt's Bees hand salve. I have very nominal GI involvement, but I think my diet of whole grains, fish and organic fruits and vegetables has helped. Best to you, Beth

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Xeloda is 5FU, but not until it converts in the liver. I have been taking it for months and have hand/foot syndrome (which also could be caused by the chemo that I am on - Ixempra). I have had no diarrhea or really any other problems. Hope this helps! Jayne

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Hi,

I am considering xeloda but need to use my hands as I am a painter. Were there any medications that minimized the pain? Any info you could give me would be appreciated.
Thanks

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Painter,
I am a collage artist and when I work my hands are generally covered in glue, paint, inks, whatever! I was on Xeloda for 2+ years. My hands peeled and cracked a lot. It's important to keep them moisturized as best you can. I found that "Udderly Smooth" cream or Aveeno lotion helped the most. If you can, try to use the lotions and wear gloves (you can get white cotton ones at a medical supply store) while you sleep. Most everything I use in my collage work comes off my hands with soap and water. If you need to use chemicals to clean your hands that could be difficult as the skin gets very sensitive. That said, the only other side effect I had from Xeloda was fatigue, so it was a good chemo for me. Plus, you take it at home and that means less time at the treatment center. Take care,
Joanie

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I am just now being switched to Xeloda...I've got from Arimidex to Faslodex to Aromasin all in the last 3 months...the Arimidex worked for over a year but the Faslodex and Aromasin didn't do a thing and I've been progressing pretty fast. I've got some kind of inflammation of the lungs (pleural effusion was ruled out) that I'm taking Cipro (antibiotic) for. I'm very encouraged by all your posts about Xeloda and have gleened from them a list of things to do/not to do...and hopefully I can avoid or reduce some of the side effects. My best to all of you and thank you for your posts and encourament!!

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