All about Xeloda
Comments
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Jennifer, My mom is doing extremely well on Xeloda but has noticed an increase in joint pain since the very beginning on it. In her case it's her hip joints that are the problem. She's had clean scans and her oncologist isn't concerned so that's good enough for us! He had given her an extra week off between cycles once because she was starting to have some cracking on her feet. By the end of that "time off" her joint pain had almost resolved completely so it's definitely related to the Xeloda and is back since getting back on her regular cycle. Other than some redness in her feet she has no other SEs since that break.
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The joint pain thing is an interesting SE. I didn't get any advance information on it from my Onc. HFS, yes. Nausea, yes. But joint pain? Not a word.
Has anyone experienced a kind of manic level of energy on Xeloda? Compared to my time with Faslodex, I have energy out the wazoo. That's the reason I did my shoulder in. I've gotten to chores that I've been delaying for two years now. It feels great!
Stella - I hope you feel better soon. Let me know how things are going.
Golden girl: What is your Mom doing for the foot cracking?
I've developed my own crazy little balm formula for my feet. It is one-third beeswax, one-third walnut oil or coconut oil and one-third organic lard I get from a local butcher. Add some Vit. E oil to keep the batch from going rancid. Melt all three together over low heat, and let cool. It has the consistency of vaseline, and if it doesn't, re-melt it with a little more coconut or walnut oil. You can put essential oils in if you like. I use about 15 drops of peppermint oil per cup of ingredients, as it cools my feet down when they feel hot and burning.
I'm also using an old singer's trick for the mouth sores and tenderness. Whenever I had a sore throat, my voice teacher told me to gargle with pineapple juice because the malic acid in it was very soothing. I got one sore on my tongue, and hit it with pineapple juice several times a day, and it really seemed to help. It healed fully in three days, and wasn't very painful.
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It seems like xeloda gets better with time. I am on my first week off and I have all type of problems. Joint pain, jaw and mouth pain numbness, tired omg so tired and I feel fatigue at times. I think I am tired more from about 10am till 4pm than for some reason I get more energy. I too hope all passes and it's kinder to my body. From what my onc says it's an excellent drug that does wonders. I pray all this crazy ness with my body fixes it self. Maybe I need a couple of days of work just to rest and do nothing. My problem is I am all over the place between work, chores at home, kids and everything else a mom/wife/daughter does.... So tired.
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I found that my body did adjust to the Xeloda. I still have fatigue and some other SE like peeling skin on toes and the big D, but I have adjusted. I know my body cycle now. Day 10 is the big bummer for me. 11-14 are bad but not as bad as day 10. the week off I recover and repeat. I can live with all the SE and their cyclic nature. 18 months and still stable I will take it. REst when you can. Listen to your body. Consult your doctors when you just can't take it anymore. There is a lot of flexibilty with Xeloda. I hope it brings you good results.
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I'm on my 3rd round of xeloda, 7/7 and am having a lot of gas. My oncologist said it "may" be from the Xeloda. It doesn't seem to matter what I eat,I have gas and it is uncomfortable and a bit embarrassing. Anyone else experience this? Any remedies you can suggest? Thanks!
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Someone on this page suggested caffeine as a remedy for fatigue. I am now experimenting with taking some diet Pepsi every day at about 11 in the morning. It seems to be make my fatigue somewhat less. I'll have to see if it works long term.
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Clare64,
Is it flatulence, or uncomfortable gas that seems trapped? For the latter, simethicone tablets can be helpful. For the former, . . . I've got nuthin.
When having a huge fart attack, I seek solitude. I have warned my friends that if I move away and have a very thoughtful look on my face, I'm usually having a toot storm. Come close at your own risk. We've even got our own code word: Jennifer is "concentrating".
Let me know if you find anything that works for the toots. They can be inconvenient.
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second cycle for me not only am I still having stomach issues /pain I also have HFS my feet hurt the worse and am keeping them moisturized but ouch , and I am feeling a bit down Girls kick my butt for me feeling pity its the first time I have but boy it sucks at least my faithful furry friend (German Shepherd) Annie is lying beside me haha, but probably because I finally let her in my bed.hugs to all
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I too want to know if there is something we can do for the toots as I have that issue as well0 -
I've been taking probiotics and they seem to be helping the toots. It's early days yet, but so far, no major southern storms in about 4 days.
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Thanks - I'm trying gas x and probiotics.
Just found out that my CA 15-3 doubled after two cycles of Xeloda. Did any of you experience this after your first few cycles and did it then start to come down? Getting a little nervous, I know my doc said that it would likely go up at first but this seems like a big jump to me, it is higher than it has ever been.
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Hi Everyone,
I will be starting Xeloda soon. I am having my "chemo talk" this afternoon with the nurse, since this will be my first time on chemo. I had the chemo talk 9 yrs ago when I was first diagnosed stage 1, but chose not to have chemo after receiving my Oncotype DX results. They were 8% chance of recurrence in 10 yrs if I skipped chemo, and 6% with it.
This will be my 3rd treatment since my cancer returned June 2012. I started with Faslodex/Zometa,(I will still be receiving the Zometa, though every 3 months now instead of monthly) which shrunk the tumors till the were gone. Jan of this year, the tumors returned. I was then put on Femara (which I was on 9 yrs ago as well). At my 3 month scans, the tumors were larger, and there were more of them.
I'm hoping this treatment lasts at least as long as the first treatment!
Clare64, I was told by my Dana Farber dr, that if the tumor markers go up after the 2nd treatment, then scans should be done then, instead of waiting till the 3rd month. She said not to worry about it the first month. Mine are sky high right now, I'm hoping they don't go up any higher after starting it!
Good luck!
Lynne
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Just finishing my second round of Xeloda and I am impressed with those of you doing 14/7. By the seventh day of my 7/7 I ache so much that I can't imagine seven more days without a break. I imagine that my age of 74 may have something to do with it ( or at least that's what I'm told). Before this recurrence I could and would outwork my daughters and daughters -in-law but not now.
Today I have a number of bright red spots on both arms but many more on the arm with Lymphedema. Anyone else have a rash. It is different than the Affinitor rash, doesn't itch but burns when clothing touches it. My hand are slightly red and hurt if I open a door or take a lid off something.
As far as the "toots", I am an expert at making a quick exit from a room but oh those little grandson's do get the giggles if Nana toots. The teenagers just look embarrassed . Oh the life changes we face.
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I just started cycle 2 first day. It does not seem to get better. My achs and pains and headachs like crazy and always tired. I can't sit without falling asleep and at night I have ensomnia. Does it get better anybody. I hate cancer so much for doing this to my body. I need quality of life back...
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Hi Crone - I have red spots that I think are from the sun on my chest, back, arms and hands. My doc said I was extremely photosensitive from the sun and stay out of it. My thumb split in a few places today and are starting to feel like paws.
Stella I'm exhausted a lot of the time too. My headaches went away after the first round. I'm on 7/7.
Lynne who is your doc at Dana Farber? I'm going to call my oncologist at MGH tomorrow to talk about tumor markers. I hope everyone gets a better night sleep tonight!
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I have taken this medicine for 3 cycles 7 on 7 off my ca 27 29 tumor markers have went down 1000 percent, they are now 15.49. I pray its working . worst side effects is nausea and tiredness and swelling in feet and ankles no skin issues so far. God is GOOD
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Thank u Clare64,
I hope the head achs stop they are not so bad like before but still there and but the achs and pains are the worst. I am 43 years old and I feel like my body is 90. Ian always tired and always sleepy. It was never like this I hope all this passes and xeloda is actually kicking some butt.
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shawna did you have your tumor markers tested after the third round?
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Does anyone have any suggestions to help someone like me remember to take my pills within 30 min. after I have a meal. I think I should not take them immediately after a meal so think 15-30 min. I then find myself outside gardening or whatever and an hour or two have passed and I forgot about the pills. Do you think it is important to take them within 30 min. to work better? It does not seem to upset my stomach when I take them later.
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I have an alarm set on my phone that is really loud and works every time!
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Hi Sue,You can take Xeloda WITH your meal or within 30 minutes of eating. There's no reason to wait to take your medication.
Get yourself in the habit of taking your Xeloda along with your meal and then you can get involved with other activities afterwards without getting sidetracked and forgetting to take it.
Kessala
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Hi ladies - I've read so many people say that Xeloda was an easy chemo for them.......it isn't for me. I'm really struggling with it. Terrible nausea, diarrhea, vomiting, exhaustion. I'm having a hard time eating and drinking. My oncologist just prescribed compazine for me. Does anyone else have these issues or did you have them in the beginning and they lessened over time? Yesterday I just spent the day in bed crying. The only thing I can compare it to is a really bad stomach flu. Any advice welcome! clare
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Lymphedema and Xeloda. Anyone have mild lymphedema and have swelling from Xeloda. I developed Lymphedema thee months after diagnosis in 2001 and had three bouts of cellulitis which required IV antibiotics. I wore a sleeve day and night for years, then just at night and for the last year not at all. I am day 3 of the seven day off cycle and my arm and hand are swollen and achy. No sign of infection but I put the sleeve back on. I wonder if this is Xeloda causing it. I also had mouth craters from Afinitor and the place where I had the largest sore ,on my bottom lip, is red and sore again. People seem to think life goes back to normal on the week off and after three days it is better but with these new symptoms, there is no doubt that the Xeloda stays active in your body.
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Jennifer - My mom soaks her feet in cold water a couple of times a day and slathers on Udderly Smooth or Gold Bond lotion throughout the day. While she's at home she wears those cotton pedicure socks ($2 at Wal-Mart) over her lotion-covered feet and also sleeps in them now. She also found that wearing closed shoes that don't let her feet slip around too much has been better for her skin than wearing flip-flops or sandals. Your creation sounds like it's worth a try when her feet start acting up again. Will give it a go!
Fortunately her throat and mouth have been fine. We still think it's from wrapping the pills in marshmallow cream since they never come in contact with her mouth or throat. That stuff is thick!! lol
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Sue, I use my phone to remind me too, & I usually take X right after food too.
Sorry some of you are having bad se's. I'm just really really tired all the time- & the toots! I had a bit of constipation in the 2nd week of my first cycle. But then I'm only on the 2nd cycle (1st week) so it's early days for me. I guess the se's may worsen as time goes by.
I have started reading this thread from the beginning (only on page 20 something) - lots of helpful stuff there
Thank you all who have been there beforekt
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Crone, I do not have lymphodema but the first couple of months after staring Xeloda, my legs, ankles and feet swelled up. I did not do anything special, just put my feet up as much as I could. The swelling went away for the most part, but my right foot still gets puffy at times. I have been on Xeloda for 9 months so far.
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I've been on my Xeloda for 21 months now. Still stable on the tumor markers. I have a LOT of fatigue now, though. Like overwhelming. My dh and I will be driving in the car, and I will basically pass out. I also work full time, in a very demanding job, so I can't take a nap whenever I feel the urge. Naps don't restore my energy anyway. Asked the onc for Ritalin again, and he's still fighting me on it. I have no idea what the big deal is. He insisted on Thyroid blood work first, and he actually had the audacity to say to me that we should find the root cause of the fatigue. I said, you and I BOTH KNOW it's the chemo I've been taking for 21 MONTHS now. It has a cumulative effect. I have no other conditions. My blood work is otherwise perfect. No red blood count dip, nothing.
He says that none of his other Xeloda patients report fatigue like I'm describing. A) Really?
I said that apparently I'm not like other pts. on Xeloda, since I have had NO HFS syndrome in all this time. So being "like" other pts. isn't really a great argument against what what I'm experiencing. After leaving the office that day, I lost it and cried in my car for about 10 minutes. I'm so SICK of having to beg for every little thing.Of course, my thyroid blood work came back perfect, as I predicted. Nurse said she'd mail the ritalin script to me (but that was almost 2 weeks ago). I know I should call back and see where the heck it is - but I honestly don't think I can emotionally handle her telling me that the doc still won't do it in spite of the thyroid being fine. I just don't have the energy, emotionally or physically.
I'm about ready to go to a quack shack somewhere just to get a Ritalin script. This is BS. What else do they want from me?
Sorry - I'm just so sick of it all today.
Thanks for letting me vent.
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lizlemon, I really know how u feel. I am not on xeloda as long as u but I am so tired all the time I too work full time it not like I could take a little nap. With that said when i am home I try to rest but xeloda is really interrupting my naps. It's a no win situation. I am only on cycle 2 and I am beat. I am generally all over the place but this med is really taking that away from me. I am 43 and I feel like my body is 90. I feel like I have the flu most days but I don't lots of achs and pains. I see my onc Thursday maybe he could explain it to me...
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Stella- thanks so much. The doc's office called me back just now to tell me that they don't know anything, because my doc is out today, and so is his nurse. I guess everyone else is incapable of looking in my chart...or - there's not a word written in it about giving me Ritalin, or it says, "Patient is drug seeking" or whatever secret code they put in my permanent record, so they won't tell me in my doc's absence. They give this drug to CHILDREN for God's sakes. Other women with Stage IV say it helps them be alert enough to get through the day. I just don't understand the hesitance. It's not like I'm asking for Heroin!
I also have a lot of joint and muscle pain and stiffness. I can relate, Stella. But I know mine is from my AI. It's really bad. Though, I've heard others on Xeloda say that they have experienced the joint pain (especially lower back) with just the Xeloda also. I am 48 - and I went from feeling my age or maybe younger, to just feeling like I'm 90 also. If I sit in a chair for say 20 minutes, I can barely get up and walk due to the pain and immediate stiffness. I get stiff FAST. Even if I close my hands around my iPad, when I go to move them, my individual fingers are stiff and full of pain. This all started after the AI. It sucks. I also feel pain in my hips when I lay on my side at night. And so, I'll switch sides, only to be woken up again by the pain in the other hip.
I know I should be grateful (and I am - I truly am) that it's not horrible for me yet. But it's sometimes hard to operate in a world and keep taking it on the chin where people keep saying to me, "Well, you LOOK GREAT." Yeah - thanks, I still have terminal cancer.
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Lizlemon,
I hate when they tell me I look great when I know I look terrible. I was on a/a before xeloda I love over 75 pounds in 1 year. So I hate when people tell me I look great. Also do we get dis coloration with skin on xeloda??? I just hope it's working and it gets easier with time. My doctor thinks xeloda is an excellent drug. But let me tell u I feel like shit most days. I hate feeling like this. I need my quality of life back. Also did u get headaches from xeloda. I get them know. I never had headachs.... I am just frustrated and annoyed this is not normal to live like this.
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