All about Xeloda
Comments
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Hi Scwilly, my bilirubin has been up some since I started Xeloda, but my liver function values have always been wonky. They rise and fall for no reason whatsoever. Eventually my PCP called is "Gilbert's Disease" and stopped worrying about it.
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pajama: Interesting - I looked up Gilberts Disease - and saw it said no treatment necessary - I like that kind of DX.
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Been taking 3000 mgs of X. 6 pills a day, 2 on, 1 off for 6 months. Feet got progressively worse, fatigue got progressively worse, HSF starting to move to my hands. I don't like X! BUT X likes me! CEA steadily dropping. Great PET showing lots of improvement. MO is lowering my dose to 2500 and moving me to one week on, one off. He said that once the X has shown to work, changing up the dosage has not been shown to alter the positive course of the treatment. I will be taking two weeks off because I'm having surgery (another breast recon...only my seventh). Then I start the new X regime, with the hopes that it lessens the HSF and the fatigue.
Stefanie
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Stefanie, that's fantastic that your scan and TM are looking so much better! I am in my fifth month of Xeloda, and at my last appointment my onc said that the side effects are cumulative so I will eventually need a dose reduction, but I'm not there yet. I have been noticing red feet often since I started, but now I'm having red hands as well. The skin on my fingertips feels too smooth and a little thick, like the sides of my feet. Anyone else notice that? Will we lose our fingerprints and will our phones fail to unlock? I feel more tired than I used to, but fortunately not ill. I run out of steam earlier in the day so I have to do anything important in the morning because I might fizzle out in the afternoon. Projects at home are not getting done but I am still driving my kid around and still doing yoga and dance classes.Oh yeah, the tearing eyes are getting worse. I'm using drops several times per day and still have tears running down my cheeks at times. Maybe I will try using a gel at night.
Pajim, have your feet recovered? Diana, I'm glad to hear you have a cruise planned! I've been off the thread for a bit. Greetings to all!
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When should I expect things to start with my feet. Only on cycle two. Still dealing with issues on one foot from A/C.
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HLB - yes I remember Abigail. A very unique human being. And a lot of info I never realized ws out there.
Here's the govt case report on the reference to Xeloda dosing. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC53402... BUT we have to remember that worked for her. And for others on Xeloda brain lesions develop.
For me - I had liver lesions double in size and SUV while on Xeloda. Meantime, the lymph node masses and all the cancer otherwise was down to no evidence of disease or at least unremarkable on persent PET CT.
Tomorrw I have to figure out w the MO what choice to take while remaining on a low dose Xeloda and a chemo that will get this liver cancer that seems to still be breast cancer. And do I need a biopsy?
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Question for all of you.....In the past 6 months Ibrance didn't work for me and radiation did not relieve any pain for me. I had one treatment of Gemzar and Carbo and now have severe GI issues so that tx is out for me. Has anyone had a tx where diarrhea is not so prevalent? I will cross post on Xeloda as well. Thanks
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Linda, for me, when I was doing just X, I had very watery "D". I started using CBD and now my stools are solid.
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I am on my 5th cycle of X, no diarrhea Constipation instead. Who knows why!
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I too have constipation instead on xeloda. Told onc and he said no, it causes diarrhea. Like I don't know the difference. if it's not easy run of the mill common se they don't believe us. Or he is just plain lazy.
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For loose stools you can carefully add an apple pectin capsule. Start slowly, take a day off here and there until you are where you want to be. It can make you blocked too, at least for a time while the fiber moves through. So slowly is best.
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HLB,
Constipation is listed as one of the Side effects, tho diarrhea is more common My Onc is on board - tell yours to read up!!
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Bluebird I checked the alt section and Abigail is back! she did have interesting info and I'm glad to see she is still around.
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Toes healed up, just as they did last time. I had to spend one day of my trip in my hotel room with feet up. It's the first time in the almost five years I've had mets where the cancer prevented me from doing something I wanted to do. I'm still annoyed -- I hate feeling like a cancer patient. I've had issues over the years but it's never been a show-stopper.
Stephanie, congraulations!
And Lindalou, I don't get diarrhea either. And side-effects seem to be dose-dependent. Maybe you could start at a lower dose and see how it goes?
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Well darn, just found my Aquafor in the cancer drugs box. I will use it now. Ran out of Ojibwa salve for now. Using the bag balm and coconut oil. Using these on my dog's scaly nose too.
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This drug is really doing a number on my eyes. Today was the worst. I've been using systane drops for the dryness, and now my vision has gotten so blurry I really noticed it when driving to work this morning. Went out for lunch and eyes were SO SENSITIVE to the sun! They have been red inside and out, ever since then. I am on day 6 of my week off. Only the first cycle!
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Yes, HLB, my eyes don't like X much. They were tearing a lot even with drops throughout the day, so I started using the Systane gel drops overnight and that has made a big difference. My eyes are dry but not red. You might try the preservative-free drops. I like them; they don't sting. Maybe you should check in with your optometrist or ophthalmologist to make sure there is no other problem going on?
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I am too afraid to go on the other chemo drug. The cancer lymph node masses tried to suffocate me, even partially closing off heart superior vena cava vein, main airway and the right lung bronchial tube and don't want that to happen again. The Xeloda was working for the node masses, all gone so to speak. So today I called onc's office and asked to stay on Xeloda / Ibrance and his choice of hormonal drug. Or Xeloda and something. Liver biopsy Friday. But I started the Xeloda today anyway. 2 in day and 4 night. There are lymph nodes along my neck and supraclavical that come and go, large one on r side of throat that hurts. Just too scared.
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Has anyone Not have their hair come back while on Xeloda? For those starting Xeloda while bald how long did it take for hair to start back?? It will be five weeks on Friday and nothing. I'd be happy with an inch right now. I know it seems petty compared to all of our other issues but it was one thing I was looking forward to
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I am joining you xeloda sisters. Had my first 2000 dose this morning and so far so good. Fingers crossed it works with minimal se.
Good luck everyone on it .Karina
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Hi Karina, welcome to our group. Sorry you are here though. I'm new to Xeloda too. On my 2nd cycle. Hopefully it works for a long time for all of us.
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Amen Dianarose.
Were you symptmatic with the mbc, like back pain and so on and if so can you tell any improvement since taking xeloda?
I am not too clever at the moment and so hope that will feel better.
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Just wanted to throw in here that I tried a totally different approach to the runny eyes. W/in a VERY short time of starting Xeloda I had not only watery eyes but also watery nose. Every, single morning I'd get up and just have both eyes and nose dripping like crazy for the first several hours of the morning and off and on throughout the day. I decided to get Flonase (over the counter) just to see if perhaps Xeloda may aggravate allergic issues (make you more sensitive, I have never had many allergy issues before in my life till these symptoms on Xeloda) well, lo and behold, it worked. Can't promise that it will for anyone else, but if you are really struggling with it, might be worth a try. I just do one spray in each nostril daily and that has helped tremendously.
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I lost most of my hair on Taxol, just before starting on Xeloda. I have noticed it is taking FOREVER for it to grow! It has come back, but very slowly. It has finally thickened up (no more bald spots) but is still so, so short. (Oh, and I stopped Taxol about 5 months ago.) Normally seems like I'm trimming my bangs all the time between haircuts, but this growth is so slow.
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Karina- I had tummy issues for months but thought it was from the Metformin. Then I had a backed up kidney because the cancer was crushing my urerter. Then almost a year later it happened to the other side. Now I have two naphostomy tubes and I hate it !!!!
Mary- it's been almost five weeks. How long before yours even started growing?
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Bluebird, what is the "other" chemo? Ibrance? If so, I too am a bit afraid of going on that. Just doesn't seem that we don't get much time out of it. That will be my last option for treatment before having to go back to IV chemo. Not sure I will take that route. Hugs to you and all of the other gals here.
I've been on X for 3 years. Eyes are the worst, can't be out in the sun without sunglasses, very dark ones. Even if it's cloudy out, I still need sunglasses.
All of the SE's are cumulative. None have gone away for me, or lessened. I did not lose any hair with X, but it seems as though my eyelashes are affected.
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Bluebird have you been only on xeloda for the last three years or with a combination of another drug? My onco has prescribed xeloda only for chemo and xgeva for bone strengthening. Just curious. Many thanks.
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Hi, friends. I am sorry to report I am finished with Xeloda after a fairly nice 9-month run. Scans this week confirmed what my tumor markers had been suggesting, that I've clearly progressed. The good news is it's still bone-only mets, but there sure are a lot of them.
Xeloda was my 2nd line of treatment, after Ibrance + Faslodex had worked for about 7 months. My oncologist is recommending Taxol next, though in the past he talked about everolimus (Afinitor) + letrozole as the probable 3rd line. When I asked what had changed his mind, he says he's worried about my left hip (I have bone-only mets, except for some found in my ovaries when they were removed last year) and says Taxol will work more quickly. He also points out that Taxol is likely to work well since I haven't had such heavy-duty chemo before (only Xeloda, an oral chemo).
For my part, I have wanted to avoid IV chemo and still feel deeply reluctant to go that route (in part because I saw my mother go through it for Stage IV and it not only didn't help, she was truly miserable). I'm inclined instead to try Afinitor and letrozole (which again he had been proposing until just recently), along with rads to the hip and getting an orthopedic's take on whether the hip can be stabilized or something (there's no immediate risk of fracture there, just "innumerable" lesions in the bony pelvic ring, among many other spots in my vertebrae, legs, sternum and shoulders).
So we'll see. As I posted in a new thread, I'd love any feedback about which 3rd line you'd would choose - these boards hold so much wisdom! I'm so grateful for that, and for all of you who've shared the Xeloda ride with me. Best wishes to all of us.
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Mary, thanks! I am definitely going to try the Flonase.
Shetland, I should probably go to the opthalmologist anyway, but I doubt it's from anything else besides this drug. I've never had problems like this. It started one week into the Xeloda with the eyes feeling like there was sand in them. I've been using systane ultra which really helps. Yesterday is when the sun sensitivity started and today I wore sunglasses but it's still bad even tonight with the redness and puffyness and burning. I will have to get some better sunglasses, like the ones my mom wears over her regular ones with the big sides that look like safety glasses lol! I'm a little concerned because this is the last day of my week off, so if I start again tomorrow I wonder how bad it's going to get. What a nuisance. I might try that systane gel for night, but the ultra seems pretty good and doesn't burn. Usually I just use it in the morning and it's good all day. I tried 2 different cheaper ones. One didn't help at all and the other one worked but only for a short time. Just have to experiment with stuff I guess. I'm excited to try the flonase.
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Seagan, so sorry about the progression. You can certainly give everolimus a try. I had trouble with it and my onc hates it, but even if you try it you don't have to take it if the mouth sores get you. [that wasn't my problem -- I struggled to keep my blood counts up and then my lung got inflamed. But I was taking it with Ibrance which may have been the killer]
I totally understand about the step to iv chemo. I'm so so not looking forward to it.
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