All about Xeloda
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kebab, I hope you are getting help with pain. Once my pain was managed, everything seemed better.
I had blood work done yesterday and finally the neutrophils count is good enough to go. Still only 1.1, but my mo gave ok. I am starting cycle 10 today after 3 weeks off due to low counts, but now with modified dose and schedule; 10 days on and 14 days off. My hands and feet are not bad at all. My skin is darker. I just pray that X still does the job with the new schedule. Here's wishing that X works for us for a long, long time. Hugs to everyone.
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I maybe starting xeloda next month aside from side effects what is the longest anybody been on it? Has anyone got to NED. I know it's a long shot for me but I still hope. I know the side effects could be complicated but I am sort of prepared reading all your posts. Thank you all for sharing your stores I learned more about these meds from this web site than the doctors. My doctor is great and swears by xeloda but it's not the same as someone actually taking it and going through all the side effects. Thank u ladies
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Well I don't know if my doctors will keep me on Xeloda or not. Had PET Scan last week and I have five new tumors to my lungs, new lesions in my stomach, spine is completely filled with cancer and they say my kidneys and liver are speckled throughout. My 4th and 5th rib are free from cancer. But where Xeloda had helped my femur and hip, cancer has returned to those areas. My doctor asked me to think about if I'm okay with losing my hair again. I said it wouldn't matter so we will discuss, what's next. I'm not sure they will keep me on Xeloda. I wish I could it helped me so in the beginning and my side effect were nil, just being tired. I'm wondering if what one of you ladies said that if you have no side effects then the drug might not be working, in my case I fit the bill on that theory.
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stellaratovsky, i was on it for 3 years and my MO had a patient on it for 5 yrs. I should also mention that I was on a reduced dose and 2weeks on and then 2 weeks off. worked for me.
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I have stage 2 with a reoccurrence and I am triple negative. My dr put me on Xeloda to hopefully get ahead of any type of spreading. I have been doing 2 weeks on and 2 weeks off. I have on this for at least 5 months with two more doses to go. I started getting peeling and cracking fingertips about 2 months ago. My boss gave me a dose of her lotion called Yu Be and it has helped. The peeling has decreased and the cracking has stopped altogether. My fingertips are feeling less and less like plastic because of the hardened skin. I got nauseous my first dose and felt like I did when I started chemo the last time. Be the SEs have pretty much gone away other than the fingers. Almost to the point I thought of asking them if I got changed to a placebo. But the heat has kicked up here and I think I might be feeling a little worse because of that. I do still get diarrhea and I burp a lot. I hate getting gas because it always seems to get trapped in my mastectomy site. I guess it like to gravitate to the holes that I am sure is in there. I am going to ask for a PET scan at my next appt in two weeks. Getting some nerve pain in my arm and side again and want to see what is going on. Wishing everyone the best.
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I started my 2nd cycle of Xeloda yesterday. The side effects I have experienced are mild nausea and diarrhea, with some tiredness. My HFS consists of dark spots; I haven't noticed any peeling or cracking. I also noticed darkness on the inside of my lips and around my mouth. I can handle these side effects as long as it is working! The pain I had prior to taking Xeloda has gone away (Thank God!) As well as a noticeable decrease of the tumors in my neck... I pray Xeloda will be effective for us all!
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Moleskin helped me tremendously when I got blisters or very sore spots on my feet from Xeloda! I sometimes had to cut it into very interesting shapes to get it in the right place. But it stays put much better than bandaids. The thinner Kroger brand kind worked the best for me. When my feet were real bad, I'd tape them all up in moleskin, then wear socks and tennis shoes. It made it tolerable.
Julie
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Hi girls, I know I haven't conversed a lot on this post. I have been on Xeloda for 2 years now and as of my CT on Friday the cancer is starting to grow again. Luckily it is still confined to my bones. So I am off to have more radiation and then try Faslodex to block the growth. Good luck on Xeloda my lovely ladies.
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To All the wonderful women here on the Xeloda board thanks for your time and support. As of today I'm off Xeloda for I've had major new tumor in my lungs, liver, and my bone mets have become very complicated. So I start Doxil. Haven't found that many people who have been on such, so if any of you ladies have been on or are on Doxil please PM me where I can find ladies who are going through Doxil treatment so we can share and effects etc.
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Hi. I've recently been dx with mets to liver. I was stage IV at original dx in 2010 (although we didn't realize it until six months later) with mets to spine. Had surgery to remove T8 vertebra and radiation at T8 and L4. I've been on Faslodex until my recent liver dx. Started Xeloda April 1. Onc started me at half dose, 2 pills twice a day. I am on a week on/week off schedule. I am now up to three pills twice a day. My SEs have been extreme fatigue, nausea, mild diarrhea, and burning pain in my feet only. The nausea and diarrhea usually just last a couple of days each week I take the Xeloda. I feel fortunate that my SEs have been mild compared to my initial chemo which produced severe SEs and landed me in the hospital a couple of times. I was surprised to read that most of you are on a 14/7 schedule. I'm wondering if my Onc put me on the 7/7 schedule because I had such a difficult time with original chemo. I'm hoping that X will get rid of the liver mets but am concerned that by being on the 7/7 schedule I may not be getting enough of the drug. Discovering the liver mets was a real blow. I want the X to work for me but since my SEs are minimal, maybe it's not. Have a PET scan next week to check progress. Thanks for listening.
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PS - I have taken the generic X since the beginning.
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stellaratovsky - After just one cycle my mother's pain and lymph nodes resolved almost completely. She is on her 6th or 7th cycle now and she is as close to NED as you can get without PET scans (they don't do them here). Her bone mets are all showing healing with no new mets and all of her cancerous lymph nodes have resolved. She got moved to a 2 week on and 2 off schedule to keep side effects to a minimum and recently had a 3 week break to stay ahead of any peeling on her feet which was starting which has done the trick as she is having no side effects now.
Lots of cream on hands and feet, soaking them in cold water once a day, and taking her pills wrapped in a bit of marshmallow fluff (jar is only $2 at Wal-Mart) is what she's done to avoid mouth sores, heartburn, and hand and feet issues.
Good luck to you
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good luck m360 & Saskie, sorry to hear of damn progression - may your next treatment be your silver bullet!
Sherry9316, as far as I know X can be given in many combinations & still is effective. My se's with X have also been easy, (compared to other chemos I've had!) - my onc lowered my evening dose after 3 cycles cos I was throwing up, & since then it's been pretty easy, hands get cracked & I have nausea, but easily controlled with Ondansetron. Get tired, but able to still do a lot. Just finishing cycle 10 now, scan on the 30th, been stable since the end of last year, so I'm happy. I also was worried at first that my dose was not high enough, & I so get that feeling of wanting to hit mets hard & fast!
As was discussed here (or on another thread) more or fewer side effects does not necessarily mean the chemo is working or not working - most people seem to tolerate X well. Good luck with your pet scan!
I'm trying to settle into a new house, I moved a week ago, so things are still finding their places, as am I & my dogs. Still feels strange tho... I unpack & re-arrange in bursts, it's easier if I get someone to do it with me, it divides the load! I'm not so great at asking for help, though I'm learning fast! Lots of people want to help, but need to be told what they can do, specifically. I live on my own (& 2 dogs) so I have needed lots of help & am blessed with good friends!
Happy & feel good Saturday to all!
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Hi ladies--
Glad to hear that so many of you are having good results with Xeloda! I've just started round 12, on the 14/7 schedule, 2 pills twice a day. I've been so lucky with SE's so far. I've had some peeling on my feet, which suddenly stopped 10 days ago. But now I'm having some on my hands, which probably came from too much gardening. Trying to get those last things planted so I can just relax and enjoy it all. I've found some great creams that have helped a lot. Neutrogena foot cream is awesome- thick, but absorbs quickly. Vanicream (in the pump jar) is also really good-- doesn't have "junk" ingredients, is odorless, and absorbs better than anything else I've tried. No greasy residue so I don't need to wear socks after I apply it.
I get hit with some random fatigue,usually after a long day at work, so spend those evenings on the sofa. My blood work has looked good, and my TM was stable in the mid-50's for several months, until it rose 12 points last month. Of course, I'm inclined to freak out a little with any rise, but my MO said not to worry about it. She also said she had a patient who was on Xeloda for 7 years!!!! That's the longest I've heard of, so it's encouraging that some of us can have a long run on this drug.
I've been having some pain in my left side, maybe rib or lung related. Since it comes and goes (hasn't ever lasted more than 3 days at this point), and since my lab work is normal, there are no scans in my future, until something changes. My last PET was back in October, so I'm getting a little antsy about what might be going on. My MO doesn't like to scan unless there is an obvious need, so I "won't walk around glowing like a Christmas tree" (her words).
I'm so grateful for all the info I've seen on this site. I haven't posted much lately because work has been so crazy busy.... after working 40-50 hours a week, and adding 2 hrs a day for commuting, I'm not good for much at the end of the day and just veg out when I get home. But I try to check in and see what's up with all the stage 4 girls. I am constantly impressed with everything that our crew does and can do, in spite of this disease we all have to deal with. Sending hugs to all of you! Enjoy your weekend!
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Xeloda Folk,
It looks like I'll be joining the gang, as my TMs keep rising on Faslodex (40 to 250 to 470 over a three month period). I'll be scanned on Tuesday, and by Friday I'll know if there is a protocol change.
I tried going back to the start of the thread, but got too sad when I realized that I wasn't recognizing A LOT of the people.
Is there any resource you'd recommend?
Here's what I've gleaned (in between bouts of putting my head between my knees and taking calming breaths): The dosage can be varied if you are experiencing horrid SEs. The most common SE is Hand Foot Syndrome, and that can be alleviated with balms, and topical application of pure henna (Thanks Ebru!). Less common is diarrhea and/or fatigue.
My MO much prefers Xeloda to Afinitor/Aromasin. He says A/A works great for his kidney cancer patients, but that the mucositis and pulmonary issues seem to arise more in his breast cancer patients on the A/A combo. Not that I'll be turning my back on it when the times comes.
Thanks for any help you can offer. Each new drug brings fear that it won't work, and the hope that it really will.
Jennifer
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Boy, I sure agree with your doctor. I started A/A last February and was on it 3 months. I had many side effects, mouth, weight gain of 17 lbs., lack of appetite, fatigue, etc. I had to go off it after 3 months because it was damaging my lungs. Oh how I feared starting Xeloda. I guess of am one of the lucky ones even at age 71. Little hand/foot problems. It has messed up my gut somewhat as the weeks I am on it my stomach never feels great so I have gained weight because I think eating will help. No mouth problems. It is just so totally better than A/A. I had a PET scan a few weeks ago. Some bone mets have resolved and some have improved so it is helping. Drink lots of water and as hard as it is try not to worry as each of us is so different. I researched too much and feared to much before I started.
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Well my friends, it looks like I'm being booted off the X train. Increased pain in my back/hip along with a jump in my tumor markers prompted my onc to do a PET scan for me and it showed "substantial" progression. And it's back in my liver again too. Boo!
I think I will always wonder whether the failure was due to reducing the dose to a 7/7 cycle to try to save my poor, damaged hands, or switching to the generic form, or whether it was just my time for the drug to fail... something to ponder in my old age, I guess... ha ha.
My MO is trying to get me into a PARP inhibitor trial that she feels is a good fit for me. Hopefully I'll be hearing more about it soon. I'm to stay on Xeloda until that gets sorted, but taking a pill that hurts my hands and feet AND knowing that it's not even doing anything is not doing good things to my mental outlook.
Anyway, I wish you all wonderful results on this drug that gave me a good 10 months of regression and stability. Best to you all!
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I just started Xeloda today after progressing on Faslodex. I haven't had time to read through this thread so apologize ahead of time if I'm asking questions that have already been answered.
I'm confused about a few things. The first is about what type of lotions/creams to use on my hands and feet. The nurse practitioner I saw yesterday said not to use anything with alcohol in it but also recommended Cetaphil which I found lists alcohol as an ingredient. Is it important to avoid lotions and creams with alcohol in them?
Also, I take a multi-vitamin with 400 mcg of folate in it. Do I need to stop taking them? If so, is there a good multi-vitamin anyone can recommend without folate or folic acid in it?
And, finally, I've been taking a daily baby aspirin for overall health and a nightly Advil for some muscle and joint pain that affects my sleep. Do I need to stop taking these? If I switch to a nightly Tylenol, is that a bad idea with my new liver mets?
Thanks so much for any information you can give me. My life has been super busy lately and I haven't been as focused as I should be on researching this new drug.
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GemStateGirl -- I can't really speak to the alcohol in lotions. I have a wide assortment of creams that I cycle through but I don't think I ever even looked at the ingredients list. Your skin will be very dry though -- it may just be that the alcohol would add to the dryness?
2 things my MO told me when I started Xeloda -- (1) no folic acid, at all, and (2) no Advil, but Tylenol is ok for pain control. I can't give you any reasons for either of these, but they were the 2 things that I was told when I got started.
Hope that helps a bit. Good luck to you!
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kebab--thanks for your response and good wishes! I'm also guessing the no alcohol is because it would dry your skin. I've googled some things about Xeloda here and there in the last couple of weeks but haven't been taking any notes. If I remember correctly, the folic acid can enhance the side effects, and taking aspirin and Advil while on Xeloda can make you bleed and bruise more.
I just got back from a great trip to Paris on Sunday and when I showed up to my appointment yesterday to get started on the Xeloda, my mind went blank as far as questions to ask. The trip was a wonderful distraction from my recent progression but it's left me somewhat clueless about what I'm doing with this new drug.
I'm sorry you need to switch drugs. I was hoping I'd have more time on Faslodex which was very easy to tolerate for me. I will keep my fingers crossed that you get into the PARP inhibitor trial. Best of luck to you too!
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I had a sample tube of Udderly Smooth body cream that came with my Xeloda package with all its phamphlets, etc. I must admit I do love it as it soaks in quickly and is not greasy. I have been lucky with little hand/foot problems and do wonder if this cream is thick enough for severe problems. I bought a tube at Walgreens but found a much cheaper price at drugstore.com for a pump and 12 oz. jar. I easily spent the $45 or whatever it takes for free shipping as you do go through lots of lotion plus I always find something else I need on this site. I am someone who needs ibuprofen at times. My doctor said I can take two pills a day and not worry. . Will be careful about folic acid which I did not know about.
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I've been on Abraxene for almost 8 months then they added Xeloda, 7 days on and 7 days off, a few months ago.
So far I just have some neuropathy on feet and finger tips, sounds strange but it's kind of a relaxing feeling.
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anyone else's toe nails starting to die? I went to the wound clinic for my appointment. I was told that the black on my toe nails was in fact the growth plate starting to die from teh medication. Nurse said she had only ever seen this in cancer patients who are on chemo. Good news is the wounds that have been bothering me for over 14 months are getting better. They won't go completely away, but they are getting managable. I will take sore toes and feet for no evidence of disease anytime. No plans to stop the meds yet. Just wondering if anyone else had the same problem. I am also on Tykerb by for the record. and am currently on the 14 on/7 off plan.
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My toe nails are all black, and it looks like the nail is lifting off on some toes they look like heck, I am too embarrassed to wear sandals with out socks which looks dorky, but oh well.
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If it makes you feel better JustJudi, I have to wear socks with sandals. no more open toed shoes for me without socks. It is dorky but it is better for our feet.
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yes to sandals & socks, dorkiness & all!!
My feet are ok, but I get cracks on the tip of my fingers (usually only 1 or 2 fingers a cycle). I use the udder cream they gave me with the Xeloda, also heel balm, a natural cream made from bees wax, it all helps, but only bandaging helps those cracks, & they get painful. But I kinda feel that I'm doing chemo & I'm complaining about sore fingers! Hello, I mean, I remember how awful the first chemo (AC) was, this is mild in comparison.
So sorry to hear of your progression Kebab, I hope you get onto that clinical trial & that it'll stop those mets in their tracks. It must be hard to carry on with the X even tho it's not working, and you're having the hfs! Love and luck!
Scan on Monday, onc on Tues, getting scanxious! Have been feeling pretty good lately, lungs feel better, so am not expecting bad news (but then I was not expecting bad news when they found the mets). Trying to have a "what will be, will be" attitude.
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It's day three, and my stomach feels a bit wonky. My bone mets ache. It hasn't stopped me from doing anything, but feels kind of weird. Also, I am now the queen of the two hour nap. Even on Taxol, I didn't nap, but now, I just lie down and - boom - I'm napping.
How are you guys doing?
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I am not having any toenail or cracking issues, but my feet are tremendously painful. On a scale of 1-10 I would say they average a 6-7 80% of the time and a 10 the remaining 20% of the time. Oddly, I'm not having any issues with my hands. I had been on Faslodex for a year and a half before it stopped working. Previously both Tamoxifin and Femara failed me after only a few months. Had my PET scan yesterday and will see Onc on Wed. Hope there is good news.
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blainejennifer--I'm on Day 6 of my first cycle of Xeloda and so far, I'm doing pretty well. I just got back from a trip to Europe (where I did tons of walking) last Sunday so it's hard to tell if some of my symptoms are adjusting to being home again or to the new medication or both. I'm more tired, sometimes headachey, my feet hurt, and I have occasional stomach pain. With the exception of the stomach pain, I felt all of these things just before I started Xeloda and they've all gotten better. I'm most worried about the hand/foot syndrome side effect and am wondering what Week 2 on Xeloda will be like. I'm doing 2 weeks on/1week off and started with 4,000 mg a day.
Sherry9316--I'm sorry that your feet are bothering so much but will be keeping my fingers crossed that you get news on Wednesday.
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After 12 days on Afinitor, I was taken off the medicine. My local Oncologist wanted to try it again at a lower dose but the Breast Cancer Oncologist said no. So I will start taking Xeloda as soon as the mouth sores heal and the rash disappears. Hopefully I paid my dues with the Afinitor and can have good results without the side effects.
Do most of you use the moisturizer as a precaution or do you wait until there is peeling and cracking? If you have diarrhea, can you take something to stop it ( hopefully )? Any other suggestions would be appreciated.
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