Xeloda

[jojo]

Can anybody share your experiences on Xeloda with us, please?

I do recall that some people started off the highest dose on Xeloda, then their onc's lowered their dosages until side effects subsided for reason of comfort.

Has anyone else began Xeloda on the lowest dose before, and increased the dosage until they felt comfortable with their side effects?

[Pam P]

I just recently started xeloda. My dosage is 4 500mg tabs in the a.m. & 3 500mg tabs in the p.m. for a total of 3500mg per day. I take the pills for 2 weeks then have 1 week off. I just finished my 2nd cycle.

So far s/e have been tolerable - yet I have experienced the following: tingling sensations in hand/feet, tiredness, slilght nausea/digestion issues (no diarrehea)

My 1st labs after 2 weeks of xeloda showed a huge rise in the ALP (liver enzyme) blood test it went from 144 to 1557! a repeat a week later was down to 801. Normal I think is under 136. I just had another lab today, so am hoping it will be back down. THis have me very worried -- I hope it is only due to adjusting to the xeloda & not another sign of cancer. If it is the xeloda I don't know if this will cause my doc to lower the dose. I see him next week.
Pam

[Pam P]

How many mg is considered a high dose? What is considered a low dose?

[Kim in CA]

Jo Jo,

I don't want to worry you, but just thought I would re-post my experience with Xeloda. Two years ago my tumor markers were steadily rising and even though scans didn't reveal anything we decided to try the Xeloda for awhile just to see if my markers would come down. My Dr. put me on the full dosage for my weight and height. On the 10th day I woke up and was walking to the bathroom, and I just passed out, hitting my head on the dressser quite hard. We called the Dr. and he said to immediately stop the Xeloda and come see him. Anyway, within a couple of days, I started feeling very tired and before you know it I had a fever and diarrhea. I should have called him immediately, but I just thought I needed a little bed rest (can't believe how dense I am sometimes!) When my fever went up to 104 I called my husband at work and said he needed to get home and take me to the Drs. right away. They immediately admitted me to the hospital and I was there a whole week.

Evidently, my body couldn't metabolize the Xeloda and it built up to very toxic levels in my body. It hit me like a ton of bricks. My blood counts were almost as low as when I had my high dose chemo with stem cell rescue. My doctor said that I could never use Xeloda again.

I read an article in Readers Digest a few months later that said one in ten people have a bad version of a gene that produces the enzyme called TPM T. This enzyme helps break down certain drugs. People with bad copies of the gene have virtually no TPMT. So, when they take certain drugs, it is as if they are getting ten times too much. There is a blood test available to determine variations you might have in this gene.

If the time comes when I have exhausted all my chemo options, I will definitely look into this as I may actually be able to tolerate the Xeloda, but at a fraction of the usual dose.

Just wanted to bring this up, because sometimes these side effects can really creep up on you and get you into trouble before you know it. I also have a bad habit of thinking I'm Superwoman sometimes and don't listen carefully enough to what my body is saying!

Love, Kim in CA

[*_Julie_*]

I took 1650mg in the morning and 1650 mg in the evening. I didn't have any side affects except dry hands and feet. It was very tolerable. It was two weeks on and a week off

Julie

[*_Cindi_*]

Jojo,

I have been on Xeloda and Cytoxan for about 6 months now for skin mets. It seems to be working, as mets have disappeared...but skim mets are tricky business. My dosage regiment is 1st week 500 mg (but not sure here could be 1000 mg) of oral Cytoxan, then 2nd week 3000 mg of Xeloda AND the 500 mg. of Cytoxan, then 3rd week just the 3000 mg. of Xeloda. Then I start the cycle again. This is new according my Onc., but they are seeing positive results with adding the cytoxan, as it is known to cut the blood supply to the cancer cells.

My side effects are as expected, nothing too drastic. Have had diaharea. Usually only during the 3rd week. Hand and Foot syndrome is present, but tolerable. Hair is thinning, but still have most of it...that is from the Cytoxan. My blood work has been fine. Did have low red cell count, but three shots of Aresnap and red cell count has been fine for couple of months. No nausea. Minimal tiredness.

All in all it has been a very tolerable drug for me. Happy to be able to take it at home and not make so many trips to see Onc. Only see her once a month and get my Herceptin then.

Navelbine was the drug that gave me problems (had SEVERE back muscle spasms with every dose). Didn't even control or reduce the skin mets for me. So, everyone can react differently to each chemotherapy, that's for sure.

Cindi.

[jojo]

Pam, the appropriate amount of Xeloda in milligrams all depends on the calculation of your height & body weight. When my onc told me she was going to prescribe me Xeloda, she pulled out a handheld calculator, and asked me how tall I was & how many pounds I weight.

I am very new to Xeloda. I have not even taken a pill yet! I was supposed to have Xeloda already in my hands by Monday night, but because of some complicated & ridiculous issues with my insurance, it is taking us some time to go around some loops and hopefully find Xeloda sooner than later!

I would still appreciate any more input on the starting lower vs higher dosage of Xeloda. In my case, my onc is starting me with a lower dose. I didn't think of asking her why not higher, but I will ask in the next appt.

TIA :-)

[pattyz]

Jo, I've been researching Xeloda for quite some time. Lots of good input on the bcmets.org site as well.

Currently, the 'new' standard for dosage is to start a patient on 75% of the 'old' standard. And reduce down from there if necessary because of hand/foot or the like.

It has been shown over and over again that people do just as well, response wise, on the lower dosages without the debilitating side effects.

My onc started me on an even lower dose: 1000mg 2x day, for a total of 2000mg a day. I am 5'5" @ 118 lbs. I have seen others on this lower dosage as well.

I'm gonna try to put in a link to how to figure out the dosage of stuff by body surface area... However, I am quite serious about the Xeloda doing just as good a job at the lower amount!!!

http://www.halls.md/body-surface-area/bsa.htm

hugs with love,
pattyz

[Pam P]

I think my s/e are increasing on xeloda. After my 1st cycle I felt fine. But I just finished the 2nd cycle and this last week my nausea, digestion problems are much more severe & I'm having headaches. I'm off the dose now until next Wed. & see my onc. on Thurs. Do you think I should ask to lower the dose. I take 3500 mg/day, 2000 in am, 1500 in pm. I'm 5'5'' & 200 lbs so for my weight maybe that's not a high dose. What do you think? Pam

[pattyz]

Pam, I tried to figure the 'old' recommended starting dose at 75% and came up with something close to what you're taking.

However, if you visit the bcmets.org site you'll see lots of posts on how reducing the dose helps with side effects, without affecting response.

Yes, talk to your onc on Thursday.

xoxopattyz

[al from canada]

JoJo,
Linda is 5"-1" and about 120 lb and her dosage is 1500 mg. 2 x day. She has very few side effects. I think the researcher screwed-up on the reports for starting dosages....they were way too high! That's probably why the starting dose has been down-graded to 75% of max.
Al

[pattyz]

p.s. Pam...............there was one or two posts about gals that were overweight who were PROBABLY getting too high a dose because the doc was indeed basing it on body mass/weight.

The discussion brought up the thought that a more 'average' body weight should just be 'assumed' to figure dosage.

And as Al says, it is beginning to look as tho' the drug co. came in with a too high dose recommendation to begin with.

xoxopattyz