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xeloda/capecitebine. Anyone on 500mg a day full time?

queeneee profile image
18 Replies

Hello, I am on xeloda 2000mg a day(14 days on 7 days off) but finding it tiring the second week. I have read various people are on a regimen of 500mg a day (for 5 days) then 2 days off - no other breaks. Can you let me know if you are on this and how long you have been on this regimen for? Also if you know of any research into this version of taking xeloda - I could show it to my oncologist. Thanks!

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queeneee
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18 Replies
gossy29 profile image
gossy29

Hi Queeneee, I'm on 3000mg per day (3 tabs in morning and 3 at night) 2 weeks on and one off. I've only just started, today is about my 9th day so I haven't even done a full two weeks yet but for me its been so far so good. I'm interested in the responses!!Regards

Danny

MyMiracle13 profile image
MyMiracle13

Hi. I am on 500mg 2xday 7 days a week no rest day. It’s called metronomic dosing. I started on 500mg 3xday 7 days a week no rest day on Oct 1 last year and was on it for a year. But this month, my oncologist reduced my dose to 500mg twice a day because I am also on Navelbine oral now and my bilirubin was elevated. Ask your oncologist to look up metronomic dosing. There are some scientific articles on that topic now.

queeneee profile image
queeneee in reply to MyMiracle13

Thanks ! Were you on the standard regimen (14 days on 7 off) when you first took xeloda or did you start on metronomic dosing from the beginning.? Great that xeloda has worked for you for over a year - the average is 6 months apparently

MyMiracle13 profile image
MyMiracle13 in reply to queeneee

I was on metronomic dosing from the beginning. So I’ve never had a break from Xeloda except for a week before and a week after vaccination.

Gwennie123 profile image
Gwennie123

I’m on a regimen of a thousand twice a day 14 days on seven days off. I get fatigue in the afternoons so I lie down between three and five. Very slight neuropathy in hands and feet. So far no other side effects. I’ve been on it for six months my numbers were up and down at first and I’m now coming down.. CA15 started at 600 up and down at first then up to 1100 last month and down to 900 this month. What a ride. I won’t worry as long as I continue to feel good. And the numbers decrease.Good luck,!

Gwen

Winner123 profile image
Winner123

My wife, Susie, is on what is referred to as "1000mg" per day as a lower dose. It's actually calculated on body mass so she takes 3250mg per day, 1750mg in the morning (three 500mg and one 125mg) same in the evening. Alongside this we are doing 1g of FECO per day via suppositories and a few drops orally via tincture. Susie is also doing 222mg Fenben, COC London off labels and a few supplements recommend by Dr Keith Block. Over the last week we've seen a MASSIVE improvement in Susie's lung mets. She has a mass in her upper hilar, it was causing breathlessness and a cough. Over the last week that has gone, almost completely! Its very early days so I don't want to jinx anything but wherever she is on ATM is working, we just want that to last as long as possible. Our Onc put Susie on the lower dose as she just tried Abraxane and Atezulizumab but it was unsuccessful, he didn't want to overload Susie's body. Weve seen this improvement in just two weeks on Capecitabine, I'd question why you'd ever need more than the above stated dose. We will carry on investigating this moving forward to give the best prolonged results. On a side note, Dr Keith Block recommend "Chronomodulated chemotherapy" in time with one's own circadian rhythm so recommend take less in this morning when the body will create toxicities and more of an evening when the body will accept and fight the cancer. This is all in his book, life over cancer. I've rambled on, I hope some of this is helpful? I'd be Really keen to hear everyone's opinion and positive outcomes Vs Capecitabine dosage? Thank you all and I hope the above helps. Leo and Susie Payne XXX❤️

queeneee profile image
queeneee in reply to Winner123

thank you for your reply.. I do find that if I take 500 in the morning and 1000 at night, I am less tired during the day.. however that is less than the 2000 a day I am prescribed.. I tend to do that in the second week, as I assert that there is still a good reservoir of the drug in my system after week one.. it takes a while to get transformed by the liver. Cape. has been successful for me .. stable after 6 rounds.

Cureforever profile image
Cureforever in reply to queeneee

This is a dose I am taking now after the doctor lowed the dose from 2000 yo 1500 for me

Cureforever profile image
Cureforever

Hi,I was taking 2000 a day and my liver enzymes got elevated. The doctor lowed the dose to 1500 a day. I take two in the morning and one in the evening. I feel very fatigue.

Hope it will work. I am on my third week after a two weeks break.

Best

Marina

queeneee profile image
queeneee in reply to Cureforever

Have you tried doing it the other way round.. I find a lower dose in the morning makes me less tired in the day.. bigger dose before bed

Cureforever profile image
Cureforever in reply to queeneee

Hi,Thank you very much.

It’s a good suggestion but it might be easier on a stomach because you eat during the day. I do not know why the doctor suggested me this way. I will ask. I am on 1500 a day.

Hope it will stop the progression.

Best?

Marina

queeneee profile image
queeneee in reply to Cureforever

I eat daily kefir to help my stomach. I initially had acute pain, which stopped as soon as the dosage was reduced. I find the lower dose in the morning reduces fatigue during the day.

Cureforever profile image
Cureforever in reply to queeneee

Thank you so much for your suggestions. I also try to eat organic yogurt

Cureforever profile image
Cureforever in reply to queeneee

Hi queeneee,Thank you for your suggestion. I started taking 500 mg in the morning and 1000 at night and get less tired. I am on my rest week now. How are you doing now. I have my blood test next week and I am scared.

Best,

Marina

LucyLooCO profile image
LucyLooCO

I started Xeloda in July and am on 2000mg per day, everyday with no breaks. I initially had bad bloating but it is much better now. My feet get sore sometimes, but nothing too uncomfortable. I’m very pleased with my tolerance of X and hope it keeps working!

Carolhelen profile image
Carolhelen

Hi, I'm on 4000 mg a day. 4 tabs in the morning and 4 at night. 2 weeks on and one week off. I was ok at first but have had to have longer breaks in between as I felt so bad. They thought I sepsis last week as I was so cold and clammy, so they've taken me off again and seeing the oncologist tomorrow to see where we go from here. This is my final try as I've had everything else. I didn't have sepsis but I have started taking 1000 mg per day of Vitamin B12 as I have no energy and the thought of doing anything physical literally exhausts me.

Everyone is different though so hopefully you'll be just fine!

Love and prayers to you.

Cureforever profile image
Cureforever in reply to Carolhelen

Hi It’s such a high dose. I was taking 2000 but the doctor lowed it to 1500 due to elevated liver enzymes. It’s my fourth week after a two week break

Good luck!!!

Marina

queeneee profile image
queeneee

I weight 8.5 stone and am taking 2000 a day..I told my onc.that I wanted to reduce from 4000 a day after the first round!... this is a good drug if you can find the sweet spot of efficacy and side effects... I didnt accept that I needed to take more drugs to help my stomach.. a lower dose fixed the issue. Get pushy!

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