XELODA: Hi ladies, Happy New Year! My... - SHARE Metastatic ...

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XELODA

NamasteLove profile image
6 Replies

Hi ladies,

Happy New Year! My wish for us all is for improved health.

I would appreciate some feedback from those on Xeloda, if you wouldn't mind sharing.

Still trying to mentally prepare for my transition to this new med. I am having some difficulty with this.

How long have you been on Xeloda?

How do you take it (how many days on/off)? When do you take it (what time of day)?

What side effects have you experienced? How do you manage them?

What, if any, benefit have you experienced?

What (if anything) did your oncologist tell you about the benefits of Xeloda, as opposed to other meds? Why was it recommended?

Please feel free to share any other information from your experience.

I know this may be a lot to ask, but I really need some help/ input.

Thanks so much.

Nama

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NamasteLove
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barbarac76 profile image
barbarac76

Hi Nama,

I completely understand your concern about starting a new treatment, but I want to reassure you that Xeloda has been a relatively easy treatment with regard to side effects.

Here is my experience -

Started Xeloda February, 2019 after Ibrance/Faslodex had run its course.

Dosing - My current dose is 1500mg in the am, 1000mg in the pm. 7 days on, 7 days off. My pm dose was decreased by 500mg during the summer when I had some blistering on the soles of my feet (from excessive walking). I take it anytime between 7am and 9am in the morning, and then 12 hours later. My specialty pharmacy instructed me to take in within 12-14 hours of the previous dose.

Side effects – the only side effect I have experienced is the hand/foot syndrome (more feet than hands). I have learned to limit the amount of friction-causing exercise I do (aerobics, long walks, etc). I also soak my feet in cold water when I have overdone it. I use creams like Udderly Smooth (with Urea). Some other women have shared their experiences in older posts. You might want to search for them.

A lot of good information.

Benefits – The lesions in my liver resolved. I have remained stable in lungs, lymph nodes. Quality of life is good. Even the problems with feet are manageable.

I am due for a PTscan in January, so it may be a different story, but for now, I feel well.

I wish you well with Xeloda. If you have any other questions, let me know.

Barbara

Geulah profile image
Geulah in reply tobarbarac76

I also just started. Xeloda with similar feelings. Lots of trepidation. I've been putting special cream on feet and hands three times a day. But when I started reading about HFS...got really upset. Looked ,as I usually do, for something natural or alternative. So far didn't come up.with anything. Some say vitamin B6,but no clear evidence. I am planning to contact a homeopath who has expertise in oncology , in the hope he will have some advice. There are many encouraging posts here sd nd other sites. Found them very helpful and encouraging

May you and everyone be blessed with well being and a complete cure.

NamasteLove profile image
NamasteLove in reply tobarbarac76

Barbara-

I really appreciate your reply. I am just so overcome by all of this. I feel like I am on an emotional ledge right now and am trying to talk myself down. Would that this was not my reality or anyone else's.

It helps to hear your experience. And positive results! May they continue. I'll be back in touch once I start.

Thanks for your feedback.

Nama

jstickrod profile image
jstickrod

I was on Ibrance/Faslodex for 18 months, when I kept getting infections. Because of the low white blood count, it was an indication the Ibrance was no longer working, and my oncologist recommended switching to Xeloda. I, like you, had my fear of the unknown of switching to another drug. His main reason was that Xeloda does NOT affect your white blood count. I started in April of 2019, and have had VERY few side effects. I take it twice a day, breakfast and dinner. I take 1500 mg at each time (3 pills of 500 mg each). I take it for 14 days on, then 14 days off. This is the schedule my oncologist prefers. Yes, I have developed very dry hands and feet, but I use a Urea cream twice a day on my feet. My skin around my fingers has peeled off, and they are a little sensitive, but I can live with it. I have developed neuropathy in my feet, but again, I can live with it. I think and hope you will be very happy with this drug, at least from my experience. I wish you the best of luck, and please check in to see how you are doing after a few months.

NamasteLove profile image
NamasteLove in reply tojstickrod

Thanks for sharing. I have been looking into creams and lotions. Sometimes I feel like these drugs are driving me crazy (well, really it's dealing with the cancer that is driving me bonkers). Sometimes it just gets to me.

Hearing your experience is a great help to me. Thanks for the information and encouragement. I hope Xeloda continues to work for you.

Will be in touch!

Nama

PLASEM profile image
PLASEM

I am taking Xeloda for 5 months my advice is to apply creams on your feet and hand drink at least three liters of water every day

Sometimes you have to request a lower dose I couldn’t take Xeloda for two weeks I do one week on and rest off for one week

Take care God bless you

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