All about Xeloda
Comments
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Livingit.....firstly I am sorry, we all I think know are going to be at the end of the road and some of us want to have the courage to stop treatment in order to protect our dignity and our quality of life. I am not where you are but I will be there for sure in the next couple of years and it is scarey but depending on the kind of person you are a realist or one that is in denial depends on what path you take. Me I am a realist, I want to know everything, I want to know what happened, what will happen next etc...I think yo uare the same kind of person.
Good idea about the xmas presents, me with my kids I am not buying anything so i don't have to worry about it.....
Everybody has to do whatever is right for them, and what is right for me may not be right for you AND I think we will know when the time is right.
I am so happy that you have a DH or someone that will be there for you throughout the rest of your journey. You are an inspiration and I look forward to read whatever you have to say....hang in there we are here...talk, vent, inspire whenever you want....
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Dear Zoh, it can only be good to write your feelings to us. Get it out, process it, etc. And we learn from your insights. Like these:
"The worst did happen and my cancer had spread to other parts of my body. So I do have Stage IV breast cancer, but continue to raise my little sweetie pie each day with joy. It's true, I might not be able to see her graduate high school, but I have been a good Mom to her and I have no regrets whatsoever. I have been living well as a Mom for four years with Stage IV cancer. Susan is a happy girl who is very secure in the love of her family.
So do relax and remember that even "The worst imaginable situation" is completely doable. I did not want to frighten you by posting, but rather to let you know that no matter what happens you and your son are going to be able to enjoy each other and have a happy life until the end of your lifetime, whenever that comes. I do treatment for my cancer and will continue to. There is no expiration date on the bottom of my foot (I checked.) Women live for years and years with my diagnosis. "
I especially like the no regrets..... Let's feel fulfilled. Lets leave everyone knowing that we enjoyed every minute and did what we wanted to do. Let's take chances and do funky things for Xmas and let spontaneous rich genuine encounters happen.0 -
Blondiex: You are cool. Thanks. The more I get to know you, the more I want to have your kids alone in a locked room for two hours... You deserve loving respect and weekly footrubs (or back rubs if your feet are too sore). I still cant believe I talked to my onc about the end of treatment and my impending death and he didn't jump up and say "HEY NOW, lets not be hasty. you still have YEARS and Millions of agents for treatment." Nope. Didn't say anything like that. He was moved. I could tell because when I told him about the scans his face turned red. He didn't even use the sad voice. He was sucking it up. Not good. sigh.. I guess I'll research SE fro Gemzar now.
K-Lo
You readin- my mail. I was responding to a lady who had a tiny baby and found a lump. She was scheduled for a biopsy and was freaking. So, either my experience helped or she lept in front of the next train. I did think that I made a good move re writing my original reply which said, 'Oh yeah? Well I'm dying of cancer and my young kids will be forever scarred and I don't really mind. Maybe you wont either." Nothing like a good proof reading.
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LivingIt: Your post is amazing. You have such strength. I just started Navelbine but it is my new first-line treatment because I can't tolerate Taxotere and I can't take Adriamycin becuase I am Her2+, and have to take Herceptin, which also has cardiac side effects. Navelbine has been easy to tolerate so far. I don't know about Gemzar. Good luck!
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Livingit: Poetic justice indeed!! I wonder how often that happens...where the tables are turned on them and they are the ones waiting with baited breath to hear what comes out of someone else's mouth. I'm just sorry the news was not better. I have read good things about Navelbine -- the main se I read about is constipation, but otherwise it sounds somewhat gentle. I hope it will be for you. I hope your new cocktail of drugs will kick some cancer A@@ and be gentle with you at the same time. I imagine that your talk was somewhat surreal. I know we will all have that talk at some point. The only thing I can offer you is support, encouragement, and lots of cyber hugs. But most importantly, even thogh some days it may seem bleak, please don't give up HOPE. I try not to "push" books on anyone, but one that I have read several times (odd for me -- usually once is good for me) is called "The Anatomy of Hope" by Jerome Groupman. It is stories about people with serious illnesses and how people need hope, why you shouldn't give someone false hope, and the benefits of HOPE. Please don't think I'm saying you can hope your cancer away, but rather just assist in dealing with it. Just a suggestion. Take care! (((((((HUGS))))))
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Zoh
Sorry things are crap for you at the mo.
Hoping you're going to be around for a bit cause I'm just starting here and you are one hell of an inspirational woman that I'd like to get to know a bit better!
Here's to the all-conquering Navybean - Good luck!
Laurie x
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big hugs livingit.. i saw my onc. cry.. about someone else but still, i know she cares very deeply for her patients.
wishing you many more bests.
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re: correlation between SEs and effectiveness. Abraxane wasn't easy, but it was mostly OK. And it worked for almost a year for me. Xeloda was absolute hell, even on baby doses. And didn't work worth diddly squat. So (shrug). I certainly wouldn't assume anything about effectiveness by how miserable one is from the drug.
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Zoh...
Sending you love and pulling for you and your buddy Navelbine! Have a good weekend...
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K-lo love what you said!!
Livingit, love that your onco is a real person....mine has been my onco. for 16 years so we know each other and he knows how I am.....glad you could talk to yours cause they truly are the only one that "really knows". We tell people things, our children, and spouses but the drs. are the only ones that really know what the deal is!!!
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Zoh,
So ironic that you had to deliver bad news to your onc. Glad you are able to appreciate the irony and very sad about progression. I believe you said Gemzar would be your chemo and not Navelbine? Is that right? AND, Where do they GET the names for these drugs? BIG hugs and good luck with the "first tier" chemo (and what, is this like whiskey in a bar?)
Much, much love.
Sue
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Yeah, Zoh, I think I would not repost anyone's earlier posts. I change EVERY DAY AND EVERY WEEK. Love you all
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i remember when my onc cried.. She came in all red eyed and i said 'what's wrong'? .... of course fearing the worst. .. and she said she had lost her longest patient.. she had had her for 12 years. I had to give HER a hug.
Of course she is the one who broke into tears when the radiologist told me i had a brain tumor (fortunately benign so to speak). I suppose she had had the radiologist come in to tell me since she couldn't bring herself to do it.. it was a pretty scary time (until the brain surgeon confirmed it was benign a week later). he had to tell me twice.
I guess I'd rather have a gooddoctor crybaby than a cold hearted buffoon.
I love her to pieces and mean no disrespect.
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Apple, Amen to a good doctor crybaby--I have one of those too. When I had the path report explained to me and asked about one of the scary sentences--he explained that it meant what I thought it did (metastatic disease) and he was so sorry. He's my plastic surgeon, who had just re-reconstructed me after my sternum surgery, and the path report came to him, He says he rarely if ever has to give patients bad news but was glad he could be there for me (this after I told him I would have chosen him to hear it from out of all the docs involved). I don't see how doctors do it sometimes, it seems like it takes a really strong and special person to be a GOOD doctor.
I bought Xeloda shoes today--little slippers with fur inside that are meant to be worn as shoes, I ASKED!! They feel wonderful! Today is my last day of Xeloda...WEEK OFF!!!
(Edited to remove the 's' in 'mets'....I know it's OCD but it MATTERS TO ME.)
Much love,
Sue
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Livingit, Gemzar was not bad for me.....I had to get those nasty neulasta shots when my white count got to low, but learned from others on these threads that taking claritin before the injection and after helps and it did. And Nancyjill....Navelbine was not a bad one for me either.....constipation was the main SE and some neuropathy, but it went away after I went off it. Apple, I don't know if I could handle an onco who cried....like to know they have a heart, but I tend to cry when others do.
No treatment plan for me yet, but I do at least know my onco sent my records to MDA Thurs afternoon so I should be hearing from there soon.
My little toe really hurts where the toenail came off when I wear shoes and I have been slapping anitbiotic cream on it. I really wish I knew what caused it to come off. I was taking a good look at my feet today, trimming the other cruddy looking toenails and really think they just never recovered from Abraxane.
My friend Cyndi basically told the hospital she had had it with pills and IVs and went home and I went to visit her yesterday and she was sitting there on her couch eating and watching tv....no nausea, breathing is better, she is eating...even her lymphedema is better. Go figure.
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Marybe you are a good friend....and the toenail could that be from medication!!
sue me off for my 7 days also.....YEA....TO BOTH OF US!!!! Love the 7 days on 7 days offf....feels better to me, hope it works!!!
Livingit...you are welcome to my kids for as long as you want them for, lol.....did you want the dr. to say all those things? I might have wanted him to say them...hoping it wasn't as grim as it sounded? See I wonder what I will do when the medication (chemo) all of it doesn't work anymore, will I look for other ways or will I let it go and just go on without it.....good luck!!!
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xeloda shoes.. i need them.. they are ouchy today.
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I was on the 7dayon then off, no side effects!
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Hey Xeloda gals,
This thread is so big now, it is almost like it's own forum. Sorry to jump in mid-thread, but had a question about nausea. How many of you on Xeloda have nausea bad enough to need Zofran 2 - 3 times a day?
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not me.... but i am usually nauseous at the end of my 'cycle'.
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Sue,
Where do you get the shoes? They sound wonderful!0 -
Stephanie, So you are the one who started up the Traveling pants....you and your sis, right? I was really impressed with the website. Are you still doing Xeloda?
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Zoh, I did Gemzar for 8months and it was a really gentle chemo compared to the taxanes. I had fatigue and low counts, no hair loss just thinning, some n/v and bone pain especially when I had to do the neulesta for my low counts. I hope this drug makes you stable and stops the progression. Thinking of you. I see my onc in 2 weeks and wonder if I will be doing scans. It has been 6 months since last scans. I dread these appts wondering if the tmt is working and my markers are dropping.
Marybe, I am glad you are feeling better. I love christmas too and love to decorate . I pray that they have a chemo cocktail at MDA center for you that will knock your cancer back.
Stephanie, welcome and glad to see you posting. If we can help you in any way possible, we are here for you.
Everyone have a good night's sleep. Dawn
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Hi All, I don't post much but do read this thread every day. It's scan time for me and we're doing the yearly ones as well, MUGA and bone scan. I declined the mammogram and breast MRI. Xeloda has been working for me and it's been 4 months since my last scan, the longest I've ever gone.
I've been on Xeloda for about 8 months total now. Switching to a 7on/7off cycle has made a huge difference in my quality of life. I also started taking Prilosec twice a day instead of once-- since that switch, I've been able to eat what I want and haven't had to take Zofran even once. Pretty awesome. Even my hands and feet seem to be getting better.
If my scans are good, I'll get to stay on this Xeloda/Tykerb combo and go in for Herceptin every 3 weeks as usual. I do take Zometa, but have done that every 3 weeks for two years now, so I think we'll be taking a break from that. I hope I hope.
Thanks to all of you who post here with your experiences and advice!
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Petjunkie: Thanks for chiming in! I loved to read your great news. I hope and double hope that your scans are fantastic and you can keep right on truckin!
Thank you every one for the kind words. I am officially out of my funk. (Thanks to a great conference in Baltimore and an increase in antidepressant meds)
Blondie, you read right. I was hoping the doc would say I was overreacting and everything was just fine. NOT. Anyway, I will be talking with him again on Tuesday with a clear head and getting my tx plan straight. It looks like its gonna be Gemzar, Xgeva and something. Either an AI like Aromasin or maybe another chemo. I will talk to him about the options. In any event its GREAT to hear all the good news about how gentle Jim Beam can be!
Marybe: Im so happy to hear about Cyndi. She is my hero for sure. I hope you told her that we are all pulling for her and keeping up with her wild ways.
K-Lo: Didn't mean to be critical or anything. I was deeply flattered that you thought so much of my words. Just didn't know how to express it at the time. Thank you.
China: Im sorry you have appointment angst. If the oncs knew how much those 10 minutes of thier time and attention meant to each patient, I think they would just explode! God bless the people who do that work! Dawn, you are like the Energizer Bunny. Nothing can stop you girl! Have some chocolate cake and watch a movie with hunky guys. Always works for me.
Nancy: I took 1 zofran morning and night and had problems if I didnt. I would call my onc about that much nausea. Have you spoken with your onc or the chemo nurse about it? I think you should. No reason for you to be that uncomfortable.
Heres to Blondie and Sue and thier Week Off!! Enjoy ladies.
As always, thanks to everyone for kind words and loving support. You all held me up in a low time and now that Im feeling great I count myself very lucky indeed to be connected to such fine friends.
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Xeloda shoes - Wow! I want 'em. Maybe the big drug makers will get onto producing them (Ha!). Nancy - I get slight nausea at the end of my "cycle" with xeloda, but a composine fixes me right up. My advice would be to take the drugs, and keep on truck'n. Best to you - Sue
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Petjunkie: 8 months is great! I hope your scans are good and you can continue for many, many more!
Nancy: When I first started X, I had a lot of nausea...Zofran made my constipation worse, so I used compazine. Eventually we lowered my dose and I added a Prilosec once a day and all my nausea is gone now. Also, make sure you are taking it right after a meal - not on an empty stomach. Hope this helps some. So sorry you're dealing with that!
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Re nausea: I carry Zofran and immodium. If it's clearly low intestines and I'm gonna explode, I take half or whole. If it nausea or somewhere in between stomach and low intestines, I take half or whole. Was told zofran is constipating, so win- win and it seems to remove that icky feeling in gut.
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The Zofran well once a day, but honestly found Ativan (or rather its generic) everyday...it seems to work better..Compazine was horrible, I was in bed all day and night with that after I look it...
LivingIt.....make sure you let us know what happens tomorrow....thanks am enjoying the 7 days off!!! Sue are you enjoying yours off!!!
K-Lo love that pix!!!
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Yes, Kathy, love your new profile pix!!
)I started my week off on Saturday so I'm enjoying my week off too! Update on work stuff -- talked to both my boss and HR today. They are all ok with the telecommunting and everthing is in place except my laptop - IT is still working on it. If they can get it set up this week, I'll start on Thursday. Boss decided we should do Thursday/Friday instead of Friday/Monday - that's ok with me...just so I get the 2-day break. I didn't really expect it to happen this soon so I'm freaking out a little. And I need to get everything in place at work and at home by Thursday now. (I need to set up a work area at home somewhere.)
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