All about Xeloda
Comments
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Welcome, I hope it's as easy on you as it is on me. As a matter of fact, I feel bettter on this than I did the AI's. I think it's because the se's can come and go and with the AI I was in constant joint pain. Moveing much freeer now.
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Karen - Welcome!!!
My side effects haven't been too bad. I'm mostly dealing with hand and foot syndrome. Bag Balm seems to really be awesome in cutting down the peeling, though. Just a heads up in case you end of dealing with that.
A nurse from Genetech called me out of the blue today. She must have gotten my info from the pharmacy. She was concerned about my HFS and wanted to call my onc to tell him, but I told her no thanks, I'll let him know when I see him Tues. She really wants me to call him now, but I'm not calling if I can still walk. Plus, I don't have any blisters, just tenderness and burning. Why do they even do that? My onc doesn't need a nurse from Genetech telling him what side effects one of his patients is having. My onc knows about my HFS and so does my GP. Neither seemed particularly concerned.
I just hope X is working. Had my labs done yesterday and I'll find out at my appt. Tues if my tm's are going down.
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Cynthia - I've been getting the Genentech nurse call since I started X. And she was adamant the day she called and I had the blisters, that I needed to contact my Onc immediately. She told me that they were required to report Grade 3 SEs to the FDA (my blisters qualified...who knew?) and my guess is that they are trying to prevent serious SEs so they don't have to report too much. It was starting to get annoying as she was repeating all the SEs and when to call the doctor, and be careful if you're on Warfarin, etc. I finally said that I was fully aware of all this, and she said she was required to recite everything and I could interrupt her at any time. Glad we got that straight!
I have a PET/CT scan on Monday. I share your hopes that X is working...good luck with your labs!
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Hi everyone - after fretting about taking this stupid medicine I finally did it today. I was supposed to have started last night but after crying hysterically for over an hour I decided to take a sleeping pill and start fresh today. It was almost like I had a panic attack after the medicine came in the mail. It brought me back from the land of denial and made this whole thing real again. I have taken both doses today and so far so good. I feel like I am on so much medicine right now that body is wondering what the heck is going on.
I have a question - should I start putting the creme on my feet and hands now or wait until I see signs of trouble?
Thanks for all of the support on this board and others.
Hope you have a great weekend!
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Have a great vacation Frapp. Hi to all the new Vit X! ON cycle 8 or 9, due for dea test tomorrow. If it goes up again, off for an immediate pet scan. IF not, regular ct scan in about 6 weeks.
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LuvRVing - thanks for the info regarding the Genetech nurse. I think she might have reported mine, too, because she said she had to fill out a report form about it. I've looked at their info on how to grade the HFS and the only Grade 3 I have is peeling and the peeliing is much improved with the Bag Balm. I guess I'm mainly Grade 2 except that it doesn't interfere with my daily activities all the time, just like 2 days out 14. If it is working, I won't want to decrease the dose if I'm mostly okay on it. I guess they have to be careful, but I just need to have my cancer controlled. Good to know I can interrupt her. I told her I read all the inserts and then some, but she repeated all the info. Good thing I had the time. lol
Good luck with your PET/CT scan on Monday! If my tm's have gone up some more, I'm sure there's a scan in my future.
Carla - The hardest part is taking those first pills. I, too, just had to force myself to do it. Any side effects you have will probably begin slowly and be very manageable. Most of the ones I had with my first few "on" weeks have gone away. I'm just dealing with hand & foot syndrome, but not everyone gets that. You can wait to begin doing the lotion. Just watch for signs of redness or color change and you can begin then. Good luck and I hope you don't have any problems.
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Hi Karen, welcome and hope the Xeloda will be a friendly fighter for you and effective.
Barbara
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Hi Karen, welcome and hope the Xeloda will be a friendly fighter for you and effective.
Barbara
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Hi Karen, welcome and hope the Xeloda will be a friendly fighter for you and effective.
Barbara
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Hi Karen, welcome and hope the Xeloda will be a friendly fighter for you and effective.
Barbara
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Welcome Karen. Hope u have a long and successful ride in on x. This is the first chemo that has worked for me. I have scans aug 23. Hope it still is working. Frapp & chickadee I hope u have a great time on vaca.Lauri & Mauimom I am sorry to see u leave. I wish u the best on your new tx. Michelle you are so active. That is great
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Carla, yes, start putting the cream on now. You want to prevent the pealing and dryness. It's better to stay ahead of it.
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Barb - if I hadn't been so insistent that my onc do the CA 27.29 tests on a regular basis, I would be living life with no knowledge of my mets. I look fine, I feel fine - absolutely no symptoms of trouble. I had cortisone shots in both knees back in May because I had been in pain for years. So honestly, I feel better than I have in a very long time. So I choose to live as though everything is normal. I have two diseases that need to be managed (I am also Type 2 diabetic) but I am lucky that I can live a fairly "normal" life, if you don't count downing daily chemo and frequent medical appointments
Today I'm taking my mom out to lunch, then tonight I'm going out with my daughter and a bunch of 30-somethings women to a Chinese restaurant where they take it over and spend the night dancing and singing karaoke. It's going to be a late one - she told me I have to spend the night at her house because it will be 2 a.m. when we get home. Hmmm....I might try to take a nap this afternoon!And I started bike riding this past Sunday. So far, we've gone 4 times and I'm good for about 6 or 7 miles. I love that my DH started riding a few weeks ago and has taken an interest in his health - it's a big change!
Wishing everyone minimal side effects and feeling well enough to have some fun!
Hugs,
Michelle
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The specialty pharmacy that sends my Xeloda always asks if I'm experiencing side effect. I've learned to say no...no matter how bad the side effects. If you say yes then it's phone calls from nurses who you'll have no idea who they are or what qualifications they have.
My side effects are between me and my oncologist....he will handle them and I don't need a pharmacy's interference.
And I sure as heck did not sign an agreement stating that I will report side effects to anyone. I don't care what agreement the pharmacy has with the FDA. I'm not going to discuss my health with strangers over the phone.
End of rant....lol.
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welcome Karen wish u a long easy road on vit x.
had an acupuncture appt yesterday was talking to her about my arm swelling and hurting she said Lymphedema i didn't think of that since i haven't had a mes. well at least i know its not more mets. my rad onc wants me to wait to start back on x until after my cyber kinda anxious since i just had 2 rounds at new dose oh wel one day at a time
love and blessings
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Seamistress I am w you in not wanting to talk on phone to pharmacy. Michelle do u take naps reguraly? I could sleep anytime is day or nt. like u I am active. I golf walk and go to gym
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I have no use for those health nurse lines. I know they mean well. Our prescription plan offered it and I signed up for DH's heart disease. Well, he is very well taken care of by his cardiologist and here I am answering all these questions about his blood work, cholesterol readings.....have we done this, have we done that. The nurse always seemed to call when I was driving the car somewhere.
Anyway I finally told her that I wanted to stop. My husband didn't need a health cop, he has his Dr.
Seems like they all want to add these nursing lines nowadays. Not for me.0 -
I'm not going to be so willing to chat with the Xeloda nurse from now on. You all have raised a good point and I need another heath professional who doesn't really know me like I need this cancer.
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Sorry everyone for all the deletes back there - I only posted once but it came up all those times - don't know what happened!
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Thanks so much for all the welcomes. I looking forward to getting to know you all!
I'm only on about day 3. When did most of you with side effects start noticing them? I think from a website I found most sided effects kick in between day 11 and day 79. I only ask because I have 3 young kids home for the Summer and I'm sort of affraid to make plans with friends. I'm sort of affraid to be at the park and then get hit with the stomache issues. Or invite friends over to swim next week and have my skin peeling of my hands and feet. So I guess my question is did they hit slowly or out of no where? Love to hear about peoples experience with side effects. I just so nervous to live my life normal. (Also affraid its not going to work...but I guess we all have that fear to a degree)
Also, does any one know of food interactions with Xeloda or where I could look for that on-line? I know about the folic Acid and spicy foods etc, but I'm just curious if their other food things that should be avoided. I'm currently a big "green juicer". It definately increases my energy and I want to continue, but I don't want to hurt the effectiveness of the drug.
xo Karen
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Just finished my 4th round of X (and my first at 1500 mg twice a day). I have three kids home for the summer too and I've found X to be pretty "kid friendly" (since it means I have hair, don't have a port, only have to go to the doctor every three weeks for herceptin infusion). I have been blessed with almost no side effects so far and these vary. Occassionally my hand and feet feel dry or hot (but not every day). About mid-way through my two week cycle I have a mild episode of "Big D" but I put Immodium within easy reach every where I am on a regular basis (in my bathroom, my nightstand, my desk at work, my car, AND my purse) so I know I have it when I need it; a dose or two is all it's taken so far. I've found my energy has been really good but I went to a Yankee game after a full day at work and started to feel myself flagging around the 7th inning (9 PM) so we left. I have actually increased my activity level to include more travelling for work and found that it hasn't been as much of a strain as I had feared; however, I have a 2 minute walk to work so my usual commute is non-existent. I dont know how I'd handle a typical 30 - 60 minute commute each way. I have various lotions scattered anywhere and everywhere (work desk, purse, kitchen, but nightstand) and use liberally as needed but my hands and feet both look fine. I wear rubber gloves when washing dishes or cleaning counters but since my kids are 17, 14, and 10, they have taken up the main chores (laundry, changing sheets, vacuuming, garbage, kitty litter, cooking dinner); I just supervise, pay the bills, and do the grocery shopping on-line. The two big ones make sure the 10 year old has a daily "outing" - to a local pool, movies, friend's house - during the week. I just have to fund it. Their grandparents have also been really great about keeping the younger two busy while the eldest and I are at work.
The only things my Sloan nutritionist said to avoid were multi-vitamins and grapefruit. I dont generally eat spicy food but have had Thai, Indian, and Mexican since starting X and have not had any difficulty but did make sure to order everything "mild". The best tip I've gotten from here is antacids - I've had heartburn (something I never got before but have had a few times since starting X) and had generic prilosec at the ready.
I hope it's as good to you as it's been to me.
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I am on my 4th round and have had the same experience. I take 4 pills (2000)mg 2x's a day. 14/7. I have just started to get some burning feet but I keep an ice gel pack in the freezer to cool them down. I notice I can't take the heat as well but luckily my work is well air conditioned and I turn it on when I get home. I seem to feel better if kept cool. I usually only had the big d on the last day but it hit me on day 11 this time, but so far it was just the one day and I had been up a lot packing for vacation so not sure if that had anything to do with it. I just took half an immodium and felt better pretty quick.m I don't have small kids around so am able to stay off my feet. But I find my feet will loosen up once I'm using them. Don't worry about making plans, this drug is very doable.
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I started X on Jun 1st and am on a wk on, wk off schedule. My side effects began mostly gradually, but I did notice some like queasiness the first week. One day I might notice I was queasy, another day I might be more tired, then those would go away and I things would taste funny. It took a few "on" weeks, about 3 I think, before the hand/foot syndrome became noticable. Peeling is a Grade 3 side effect so it would take awhile for the hfs to become that bad, and it may never reach that point for you. Everyone is different it seems on this drug. I haven't had any diarrhea so far so not everyone gets all the possible side effects.
I have 2 young children at home with me (10 and 7) and we've been able to do most of what we normally do in the summer, but on a more scaled back version since I tire a bit more easily and my feet hurt. I take my X every other Friday and I've found that the best time to schedule things is that weekend because my side effects won't kick in right away. The worst time for me is the weekend right after I stop my X because my side effects are at their peak then.
I say do what you can to enjoy the rest of your summer and in all likelihood, you'll feel fine.
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Thank you all so much for all the personal feedback. It really helps.
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I have done Xeloda twice with excellent results. Just a little note: If you have a copay for your Xeloda, Genentech will pay 80% of your copay. Here is the link. I used this and only paid $20!
http://www.xeloda.com/hcp/patient-support/co-pay/
Check it out. It was a huge help!
Hugs and blessings!
Lori
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Hello, Xeloda sisters, just checking back in....all is well with me. Bouncing back more slowly than I would like, but bouncing back. Have scans sometime this month, kind of scary because they are the first set after finishing the Xeloda.
Welcome, Karen, hope your journey with Xeloda is kind to you and that it works for you. Seems to be a very effective drug!
I don't like the phone nurses either, mostly because I seem to know so much more than they do about breast cancer...
Getting ready to start rehearsals for the Children's Christmas Play at church--I'm the director! Life is GOOD!
Wishing all a good next week with minimal SEs
Sue
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Wouldn't you know it, I start vacation and so does the big D. It started on Friday night. The packing night! My feet we're feeling pretty sore and I had some peeling so last night I cut back one pill. What the heck, I'm on vacation and want to enjoy it and figured what harm could one pill do. I went back to my normal dose this am and feet felt fine allday but about 3 this afternoon the the other issue came back with even more vengeance. Taking the Imodium. I usually have this on day 14 and it only lasts the one day then its my week off but it has started on day 11 this time (4th round). I hope this hasn't suddenly decided to catch up to me now! Not sure if I should continue with the lighter dose for the last 3 days. Maybe I'll try one more night. Just 3 more days to go then it's my week off. By the way, there is nothing better than sitting at the edge of the ocean and having that nice cold water flow over your feet. Aaahhhhh!!
Hope the rest of you are doing well.0 -
PET/CT scan tomorrow. Sure hope X is working. Can't wait to look at the pictures and compare to the last ones.
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Wishing you all good news.
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PET/CT today...praying Xeloda is still working.
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