Xeloda side effects

lu ann · 05-27-2006, 11:52 PM

I have completed day 5 in a 14 day cycle of Xeloda. I take 2,000mg every 12 hours. So far I am a little more tired and slightly queesie. When should I expect the hand/foot syndrome, mouth sores, and diarhea? I hope I didn't just jynkx myself. Love and Blessings from Lu Ann.

Sheila · 05-28-2006, 06:06 AM

LuAnn

I have been on 3 cycles of Xeloda...the first cycle I felt tired, but since them no real problems....my legs and feet ache a bit when I lay down at night, but a quick fix with a pillow positioned under or between them....I was leary about being in the sun as Xeloda can cause sun sensitivity, but I have not had any....I do think the skin on my fingertips cracks more easily...but it was already doing that from the Herceptin.

All in all I find the Xeloda easy to take....It is remembering the pills morning and night. I have counted out my 2 weeks doses and placed them in the little day of the week pill containers so I know what I have taken each day. I label 1 week #1 and the other week #2...that has helped. Hoping it is as easy on you.
I am on 2500 mg a day, 1500 in am and 1000 pm.

pattyz · 05-28-2006, 06:20 AM

lu ann,
This sounds like an older 'high' dosage of Xeloda. I was on just 2000mg a DAY, in two divided doses of 1000mg, for seven months without noticeable side effects.

At the MOMENT you see redness, feel pain, have unremitting diarrea, nausea or any of the other possible side effects, STOP taking your dose and call onc. I can't tell you how many gals have been started on high dose who have had severe symptoms, only to find relief (and just as good response) when the dosage was lowered. There has been a ton of info on this same subject at bcmets.org.

Don't wait thinking the higher dose with side effects must really be doing it's job! More and more oncs are starting us on the lowered dosage schedule with better results.

hugs,
pattyz

Sheila · 05-28-2006, 12:27 PM

Pattyz
I agree totally...and yet a lot of onc.s are putting people on the higher dosage...I remember my onc. doing all the calcs for height and weight, and then pitched them and went with the 2500 mg a day which is just as effective as the 4000mg, with minimal side effects.....seems some oncs are still using the old rule of thumb and it appears more toxic at that dose with NO benefit!

I always hate to second guess another onc. dosage, but in this case, maybe they aren't up on the new Xeloda Regimen....Thanks for pointing that out!

Lolly · 05-28-2006, 12:52 PM

I'm on a very low dose, 500 mg 2x's daily, 7 days a week no breaks. It's been effective in combination with Herceptin/Navelbine in shrinking my nodes; Navelbine was dropped last month so am now on just Herceptin/Xeloda as maintenance. Will keep all posted on my condition as this is the lowest dose I've seen, but I've had virtually NO side effects other than sun sensitivity (seems to be just on my face) which I manage by wearing sun block and a hat.

<3 Lolly

lu ann · 05-28-2006, 09:28 PM

Thanks for your posts. Sounds like I'm on a very high dose, but so far things are quiet. I was instructed by my nurse to call as soon as I have side effects and they would reduce the dose.

Love and Blessings from Lu Ann

pattyz · 05-29-2006, 05:35 AM

Sheila,
Xeloda is the only chemo I know of that has had such a 'blowback' concerning the high dose recommeded by maker. With the number of drugs out there for oncs to prescribe, I do think it takes time and experience for some of them to play 'catch up'.

I know my onc is overworked and not a bc specialist, but is good to me and I really love him. Yet, I was ready to jump him if he automatically gave me the 'old' higher dosage! Was relieved and so glad at the low dose he prescribed. Not just for me, but what it meant for others under his care.

It may take the drugs maker to change the dosing schedule in BIG RED LETTERS to get all to notice and change. But, that means a cut in their revenues, so....?

Lu ann: glad to hear the lowered dose has already been discussed, with orders to call in for side effects.

hugs,
pattyz

Shell · 05-30-2006, 06:38 AM

lu ann-

I've been on xeloda for almost a year, as part of a clinical trial. My original dosage was 2500/mg2, which for my weight was 2150 mg every 12 hours. I was fine the first 2 cycles (6 weeks) then got horrible H/F/diarrhea/rash and every other symptom you coud imagine...dosage was reduced 25%, which for my weight is 1650mg every 12 hours. I shorten a cycle if the H/F seems to be exacerbating things, and most of the other symptoms are resolved...

Personally, I'd like to go to 11 days on and 10 days off, but the trial has not approved that regimen...

Two months ago, lapatinib (tykerb) was added to my regime, and I get a CT scan tomorrow - hoping for incredible results!!

Hang in there - and check out the www.xeloda.com website which answers a lot of questions...

Shell

lu ann · 05-31-2006, 07:30 AM

Thankyou all for your posts. I have completed the first week without noticable effects. I acutally felt great on the holiday, but we had friends and family over which occupied my time.

Shell, how is the lapatinib given? Iv or pills? I think it is available to me as I go to a teaching hospital.

Love and Blessings Lu Ann

kk1 · 05-31-2006, 08:15 AM

Lu Ann;

you should really have you Onc. Call the manufacturer or check the web page. In the new xeloda brochure the recommended dose is only 1250mg twice daily eg. total daily load of 2500mg. They have found that 4000 is too high and will after a few weeks have nasty side effects. They have been trying to get the word out to the Drs. The 2500 works just as well as the 4000 mg/day.

I have attached a PDF for you to print out. I got it off the web at www.xeloda.com

Beth · 05-31-2006, 12:01 PM

Hi LuAnn and others,

My doctor just prescribed 3500 mg for 1500 am and 2000 pm. I guess this was based on my weight. 185 lbs and 5'6. Does this sound like a high dose? I start taking them tonight for 24x7 no days off. I have just failed FEC after 6 doses I had a couple more spots show up in my liver for a total of 4. I am very worried/scared. I have had Taxol, Carbo, Naveline, and FEC over the last 2 1/2 years. My doctor said I have been on alot of chemo. Has anyone else had more treatments than this and good results later? Has anyone had good results with the Xeloda? Bye the way back on Herceptin with the Xeloda.

Thanks for any info,

Beth

Sheila · 05-31-2006, 01:58 PM

Beth
I am on Xeloda with Herceptin and have had great response so far for those stubborn neck nodes....I am on 2500 mg a day, which is the limit according to my onc. regardless of height or weight. She said the higher dose once recommended is no better and has greater toxicity...I have had no real side effects except for even more watery eyes than when on Herceptin and some achiness in my legs at night.

Kim in CA · 05-31-2006, 05:14 PM

Just wanted to add my concerns about the high dose of Xeloda. Two years ago my Onc put me on 4300mg per day. I am 5'8" and about 145lbs. Within 10 days I was a very sick girl, with high fever, diarrhea, etc. I spent a week in the hospital on four different antibiotics, required 2 units of blood, and a unit of plasma. I was as sick as when I had my stem cell procedure back in 97. My Onc said that it was probably something peculiar to me that I wasn't able to metabolize the drug and it built up to very toxic levels. He said I would never be able to use Xeloda again, but I really have to wonder in view of all the new evidence. Maybe I would have done fine on a smaller dose. I really hate the idea that I can't use Xeloda, if I ever need it, because I know it has worked so well for many.

Kim in CA

Gair · 05-31-2006, 07:32 PM

Wow!

I finished taking Taxotere for 6 cycles, which failed -- but did manage to leave me with no hair, eyebrows, eyelashes and the loss of several finger and toe nails. Was offered the choice of Navelbine of Xeloda and chose the latter.

I am just finishing my first cycle of Xeloda and my onc said she would start me on a LOW dosage -- but I am on 2000mg morning and night which certainly sounds like the old higher dosage!

So far I am fine (except for the dires, but I get that with everything... and it is only in the morning) no hand/foot or anything else.

Also getting Herceptin, and am taking beta blocker and ace inhibitors to try to help my heart take it.

I think I will double check on the dosage when I go in next week.

thanks for the heads up,

Gair

Shell · 06-01-2006, 05:22 AM

while some of the mg dosage seems high, remember it is weight and height based. i started at 2500mg/m2, which for me based on weight (135) was 2150/2x day, totaling 4300 mg. after 2 cycles and then experiencing nasty H/F and everything else, my dosage was reduced 25%, to 1875mg/m2, which for my weight is 1650/2x day, totalling 3300 mg ( it's difficult to play with it much further as I am on a clinical trial, and want to stay on it...).

the safer number to talk about in terms of dosage is the m2 number, because the final calculation of your height and how much you weigh will determine the actual number of pills you take...altho it's early and my math may be wrong, it would seem that beth is taking around 1775mg/m2 and kim was taking about 2500mg/m2...

...and lu ann, lapatinib is oral, once a day (for me 5 pills)...

Shell

pattyz · 06-01-2006, 06:39 AM

I think it's been established by the latest reports from the makers of Xeloda that the MAXIMUM dosage has been down rated to 2500mg total a day, not dependant on body mass anymore.

Beth · 06-01-2006, 07:32 AM

Thanks everyone for your response. My onc said we could adjust the dosage after any side effects are noticed. I agree with you ladies that how about starting smaller??? Also I was concerned about no days off but I think I am a hard case now since all the other chemos. I just took my first 2000 mg last night and woke up with diarehha cramps and somewhat lose stools. Off to get imodiam ad just in case. Anyone get that hand/foot syndrome? We need a cure for this disease!

Hugs,

Beth