All about Xeloda
Comments
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MoCoGram,
Call your MO. I am on a 7/7 cycle and it's much easier on my system. I am also on a very low dose (I don't think too many on the boards are on this.) I take 450 in AM and 450 in PM when I'm on it -- so less than 1000 grams per day. There have been some studies about lowering dosage on this drug and that it continues to be effective even at the lower dose. But I will tell you that with me, it's taken a couple of months to even tolerate what I'm taking. It is an appetite killer for me, though -- big time.
I also use the liquid diarrhea medication -- for me, it seems to work faster.
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Thanks, BevJen. Right now I'm on 1650 2x a day, so 3300 daily. If I may ask, what liquid diarrhea medication do you take?0
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liquid loperamide -- OTC at CVS -- I think it's just liquid immodium. I follow the directions on the bottle, which tells you to take the main dose first, then if needed a half dose, then if needed, another half dose. I only got through all 3 doses one time so far (been taking since end of July.)
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MoCoGram, I’m on 3,000 mg a day and also do the 7/7, like BevJen. I’ve had no diarrhea. My side effects are minimal peeling on my hands and some nausea periodically. I hope it subsides quickly
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Wow, Denny! That is the longest I have ever heard of someone with MBC! Congratulations! Gives me hope!
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KBL, I’m so happy the X and the F are working for you and that you are feeling good with these meds. It’s interesting to read your blood work numbers which appear to be in your favor. It’s nice to know you can relax for the time being and enjoy the holiday season. Merry Christmas to you!
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MoCo- I would ask for a lower dose and to go on 7/7. My onc won't give more than 3,000 a day.
Also avoid foods high in folate and folic acid. Good luck!
Thanks to the others for the nice comments! Doing my best to hang in here!
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Denny,
You and everyone on this thread is and always will be an inspiration for me!
I wish everyone only the most success on treatments and no side effects. I keep everyone in my prayers for healing. I don't post much as it's been a difficult few months but I still follow everyone's journey.
Grant.
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Grant, I think of you so often and of your precious Liz. Wishing you the very best over this difficult holiday season ahead...
xoxo
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Lynn - I think of you often as well.
I managed through our anniversary last month and this Christmas season is proving to be difficult. So many things prove to be difficult when you grieve. I've never experienced anything like this before and it's so complicated to describe feelings of loss.
Hugs,
Grant.
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Thank you, DivineMrsM. I agree that when we feel good, this journey seems a little less harsh. I am going to enjoy it while it lasts.
Have a wonderful Christmas I can’t believe it’s only ten days away.
Grant, I’m sorry, I haven’t read about your wife, Liz, until now. What a supportive and wonderful husband you were for her. I’m so sorry you’re struggling. It makes me think of what my husband will eventually have to deal with and makes me sad. I’m also sorry the holidays are so hard. You are in my prayers.0 -
HELLO GANG: I know the holidays are hard for some. I deal with it by ignoring it altogether. We have no family here and really do not celebrate Christmas. It's my birthday so I REALLY ignore it for that reason also. No decorations, etc. Since the restaurants are closed (Denny's anyone), I try and make something special for Christmas Day - like a rib roast. Anyway for those of you who do celebrate Christmas - best wishes for a happy and healthy holiday.
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Grant, I am so sorry for your pain. How blessed she was to have such a caring husband! And Holidays are so hard.
I lost my 38-year-old daughter 5 years ago and the pain never seems to end.
We are always here for you!
Bless you and your angel Liz.
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Denny,
You and many others are so inspiring in so many deep heartfelt ways. The fact that you can show so much empathy for me while at the same time having to suffer your own loss is humbling.
I feel privileged being part of this group. Thank you all from the bottom of my heart.
Grant.
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Today is Day 5 of taking the chemo pill, Xeloda. I am starting to feel achy, like when I first started Letrozole. I have been living in fear of the side effects of Xeloda these past 2 weeks, and that is not how I previously lived my life the prior 2 years since my MBC diagnosis in Jan 2020. The past two years I felt pretty good and was happy. I lost my happy with the word chemotherapy. I need to get my happy back. Metastatic Breast Cancer is about change. Always changing the meds, always having scans. Always checking blood test results every month.
I saw this quote by Jay Shetty, and I thought I would share this.
"Choose to love your moments and they will love you back. Yes, loving your life is a choice.
You don't always get what you want. And you're not always in control of how you feel. But I want you to know that you do get a say in your own happiness.
You decide whether or not you are going to love your one, precious life.
Not everything is going to feel good or purposeful. In fact, a lot of this life will feel just okay if not a little boring, and at times even entirely confusing. It's your job to fall in love with your moments regardless. They're your moments after all, aren't they? You only get so many.
If there is one guarantee for you, let it be that no matter what you rise to the occasion with love in your heart and the belief that your life is worthy of this love." – Jay Shetty0 -
Woodlands, I will say right after I started, I went through some depression. I’m not sure if you were on the Zoom meeting where I said I was struggling that week. The tears flowed a lot. I will say after about a week, I leveled out and have felt better. Just know the actual med can be part of the reason.
I can relate to how your feeling. I felt the same when I started. Now that my numbers are better and I feel better, my outlook has changed to be more positive.
Your body went through a lot when you had the bleeding in your stomach. See how you feel in a few weeks. I did consider the meds the ladies spoke about at our meeting, but I’ve felt better and don’t need them yet. I won’t hesitate if I do.
Hugs from here
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woodlands,
I love your quote. I’m sorry you are feeling bad but wanted to say, at least in my experience, Xeloda side effects have been annoying but have been manageable. For instance, today I will probably have to take an immodium at some point
I hope you find it easier than expected and it works for you. I get sad and sensitive about once or twice a month even though I have a mild anti depressant (for appetite). It’s just the way it goes sometimes.
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Mocagram- I would ask to reduce your Xeloda if you are having major side effect problems. Mine was reduced at an early cycle to 2500 per day 14/7. I was better with a reduced dosage. We don't have to start at the maximum dose anymore or stay on it to have maximum effect of the medication. I used Immodium pills, which worked well for me. I am off this thread now after 14 months since Xeloda stopped working, but still peek in to see how it is all going. I'm on Taxol now, and it is interesting to have my toes back in good condition where I can wear more normal shoes (I still wear my cozy crocs though since I bought 3 pair)- interestingly the bottom of my feet still have the neuropathy that I had during Xeloda. Taxol working well now, markers down 800 points. Whew!
Since my 16 year old dog passed in September so I just got a senior rescue chihuahua mix to help me get back into exercising. I had stopped walking and now I get to walk her a few times a day and get some good cuddles as well as exercise. It's easier to be less depressed with a wagging tail greeting you.
Sorry to hear about your loss Grant. HUGS
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Nina it is nice to get an update from you. I'm glad Taxol is working for you. Sorry about your dog's passing in the fall. Your new addition, the Chihuahua, sounds so sweet and great incentive to get back into some walking activity.
Grant, thinking of you at this time. I'm so sorry for your loss.
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I had quite a bit of hair thinning from combo Kisqali/Faslodex and added biotin, which seemed to help. I'm tired of so many pills and think I'll take a break and see if my hair thins again. Anyone had hair thinning on Xeloda?
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nopkin2019, I have very fine hair, and I haven’t noticed any hair loss other than the usual. My leg hair is a little more sparse, but I’m okay with that
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I had some thinning at first, but I am okay now.
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I had some significant thinning at first, but my hairdresser reports that she sees some new growth coming in. I am also using one of those shampoo/conditioner combos (recommended by her) that are supposed to help with thinning hair (I do not take biotin -- took it previously and didn't really get any benefit from it and don't like taking extra things.)
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nopink2019: My hair started falling out when I was on Taxotere (most but not all). I had to get off Taxotere (put me in the hospital) and started on Xeloda. After about 6 months I now have quite a bit of hair and have actually had a haircut recently.
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Wandering, isn't that 1st haircut after being bald a treat? Congratulations!
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nopink2019: Thanks for the reply. The lady who cuts my hair is always in a good mood and kids with me about my hair. She also cuts my husband's hair at the same time. We really should get a discount since both of us don't have much left. Happy Holidays to all. Hoping for good (improving) health next year.
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Happy Holidays!!
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Happy Holidays to all. Proud to say we made it one more year. (PS: I turned 77 today. Hard to believe I'm that old.)
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Happy birthday, Wandering. That’s wonderful. I hope you enjoyed your day.
Happy holidays to all
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Hi friends:
This is a poem written by Charlie's uncle several years ago (12-17-2004) and I thought it was so great I wanted to share it with you:(A bit long but read to the end).
Hey, youngins, lend me an ear
I'm about to say something
You might oughta hear,
So live your young life and have lots of fun-
Father time is chasing you,
So stay on the run.
He's trying to tell you
You're gonna get old,
So listen and beware
Of what you're told.
Now sit back and take it all in,
So when he catches you
You can take it on the chin.
About a lifetime ago,
When I was thirty-nine,
I went to bed that night,
A little tired but feeling fine.
I didn't have a nightmare;
And I didn't have a dream,
But something weird happened that night,
That seemed a bit obscene-
'Cause when I woke next morning,
and went to wash my face,
My hair had fallen out,
And a bald spot took its place.
My teeth, they turned yellow-
Some had even disappeared.
I now had age spots and wrinkles
Showing through my beard.
My eyesight dimmed,
Dimmed down to the core.
I couldn't see near as good
As I could before.
My hearing went;
So my ears, they got a rest-
No more griping and bossing
From the one I love best.
My joints, they squeak –
My muscles, they ache –
They hurt so bad
They keep my awake.
My memory left,
And that was bad.
But how could I lose what I never had?
My tail light shines,
Just a little bit-
It only comes on
When the fire is lit.
Although my get-up-and-go
Has done got up and went
I still thank the good Lord
For what He has sent.
'Cause now I know
What brought on that sight;
I aged from thirty-nine to eighty-three
In just one night!
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