Tykerb/Xeloda dosing

[Esther]

I just want to remind everyone...if you are having trouble with the initial dosage that your dr prescribes for you, talk to him about reducing the dosage.

I reduced the Tykerb to 3 when the side effects were bad, and still received tremendous benefits while dimishing the side effects. I only take 2 Xeloda twice a day on a one week on/ one off schedule.

It's better to reduce your dosage and continue taking it then to stop taking it altogether. Once the side effects were pretty much gone, I just upped the Tykerb to 4 pills a day, and have seen no increase in side effects, though I am seeing more fatige with 4 pills a day than the 3 pill a day schedule.

[chrisy]

Esther, you must be "exquisitely sensitive" to these medications. Good for you taking control of this - and thanks for reminding folks that they can adjust the doese. The doses usually used are the "maximum tolerated dose" but not necessarily the optimum dose.

I got the dose reduced on the steroid when I was getting chemo, and I'm so glad I did! The "exquisitely sensitive" was how my surgeon described me when I couldn't stop feeling nauseous 16 hours after surgery. Little did we all know that the only problem was I needed to get something in my stomach! I guess I was also exquisitely sensitive to starvation....

[Carolyns]

Hi Esther and Chrisy,

My doctor does the same thing. She cuts back on the dosage. Good advise.

Chrisy, I like the sounds of "exquisite" when used to describe me...I'd take it any way I could. Maybe I am too.

I got my dose of Gemzar reduced...or a least I went from 3 weeks on and one off to 2 weeks on and one off.

Love, Hope, and Peace,

Carolyn

[SoCalGal]

I am on a reduced dose due to side effects and can tolerate 4 tykerb a day. When I try to go up to 5 the fun begins so my doc told me to stay on 4. It makes me a little nervous but I don't really have a big choice. As Esther says, it's important to stay on so 4 it is. I am on 4 xeloda a day - divided into 2 doses. Okay - just wanted to post a quick reply along with a quick hello!
Flori

[julierene]

I have been dealing with the diarreaha and my hands and feet are pretty harsh. I am wondering about switching to 4 tablets of tykerb and not sure what I can do about the Xeloda. I take 3 tablets twice a day on that. I weigh about 145 and I'm 5'3. Do you think I can get away with less Xeloda? If so, how much?

[SoCalGal]

I am on 4 tykerb and 4 xeloda a day. (Was reduced from 5 tykerb about 3 weeks ago due to excessive diva probs.) (As in Diarrhea Diva).

Okay - I am 5'7" and weigh 120 lbs. I don't know if it goes by weight or constitution. Less always works just as well as more for me.

I liked writing about my hair. Not so crazy posting my height and weight. Funny how we are.

You should call your doc and ask what he wants you to do based on your symptoms. That is what I ALWAYS do. YOu have nothing to loose from his opinion. Good luck,
--Flori

[Lala]

I started out at 3600mg Xeloda and 1250mg Tykerb but had to lower the doses due to the side effects. The hand and foot syndrome and diarrhea were no fun. I am currently on a dose of 2500mg of Xeloda and 1000mg of Tykerb. My Xeloda schedule is 1 week on 1 week off.

I have found that the lower doses are easier to handle; but the schedule of Xeloda makes it even better. In addition I use a diet that helps avoid diarrhea and I do take the daily imodium as a back up. I have heard of doses of Xeloda at 2000mg being as effective as higher doses with out the toxicity. For me the main problem was the Xeloda dose being way too high.
I know I am continuing to respond at the lower doses so that eases my mind.

[GemmaG]

I'm also on a reduced dose due to side effects. From 5 pills/day to 3pills to 4pills now back to 3pills/day plus 2pills of Xeloda. My skin is so dry and It's not fun at all. I feel so tired all the time but still working Monday-Friday 9to5. Have no choice.
I've been having so much pain for the past few days. I'm taking Oxycodone for pain at bedtime. I just felt a new lump again last night (right armpit) it's bigger than the one they saw from the CT scan about four weeks ago. They didn't even see this one from the last test. HOw could it grow so fast!? It didn't even show in my ultrasound, only that pea size tumor.
Does that mean I'm not responding to my TYkerb treatment? What's next?
Sorry for sounding negative.

[SoCalGal]

Last night, at midnight, out of the blue, my heart started palpatating - not that fast, but hard and irregular - felt like it was jumping around inside of me.

I was very scared - it lasted for over an hour. I took a bunch of ativan to calm my system and felt that I could wait one hour. I just didn't want to go to the ER. My b/f said if it was a heart attack I'd have more symptoms by one hour. Thank god he was over last night. Finally, at around 1:30 I fell asleep with him on the couch - where I made him follow me because I couldn't find a place for myself. Today I awoke with MAJOR anxiety this morning. At least the heart jumping stopped. Took some ativan and have been pretty much myself for the whole day. Did NOT take any tykerb today. It's my week off xeloda.

Tomorrow I see my Onc. We'll see what he says, if anything.

Girls:
lumps, bumps, rashes, the runs, pain, nausea, baldness, bad results, good results, markers here, there, everywhere and everything with a hefty dose of FEAR along with discomfort. We've had it all. GemmaG - you don't sound negative. You sound "normal". We are here for you. Stay steady - tomorrow's a new day. xoxoFlori

[hutchibk]

Hi Flori - you may need a muga - as there is a chance that Tykerb can have some heart effect similar to Herceptin... I am sending good thoughts your way. And to Gemma, too!

[Odette]

Hello Friends,

At the Chicago Clinical Oncology Conference they reported about this trial.
I have heard about it before: the main idea is that you take a slightly higher dose of Xeloda for one week, then take a week off.
The reason: maximum effect of capecitabine on or around Day 7, with minimal additional benefit beyond Day 8.

Here is the website if you are interested:
http://clinicaloptions.com/Oncology/Conference%20Coverage/Clin%20Onc%20June%202007/Tracks/Breast%20Cancer/Capsules/1045.aspx

I will discuss this with my oncologist next I see him.

Best wishes to all,

Odette

[MichelleH]

I am (actually was ) on 5 Tykerb and 6 Xeloda daily. At week 5 on these drugs, I have developed the hand & foot syndrome. The doc immediately told me to stop taking the Xeloda for a week or two until the hand & foot syndrome clears up, then he plans on redosing the Xeloda. I am still taking 5 Tykerb daily.

I was wondering if any of you out there have been told to stop taking the Xeloda or Tykerb until side effects clear up.
Thanks for any input.

Michelle

[Mykentuckyhome]

hi michelle, I have been thru 3 cycles of xeloda and tykerb and 3 times my onc had to stop all drugs for a period of 4 to 5 days added to my week off cause between the hands and feet syndrome and diarrhea they drug me down so far. This cycle I take only 3 xeloda a day and 2 tykerb. I am on my 8th day of the cycle and I feel like a human being again. In order for the symptoms to stop you must stop until they dissapate. Hopefully your onc will find a happy medium with your dosage. Good luck, I know firsthand how painful the hands and feet syndrome can be. linda

[Odette]

Michelle,

I'm printing the summary for my oncologist right now. I'd like to be on the one week on one week off schedule.

Best,

Odette

[MichelleH]

Thank you linda for taking the time to respond to my post. It is what I need (comparing notes) to assure myself that my doc is in check.
Thanks again, Michelle

[awjkej]

Hi Lana,

Thank you for directing me to this thread (from breastcancer.org). I just talked with my onc and he said to not take tykerb (currently 1250 mg - 250 mg tablets so five a day) til I see him on this Thursday due to my bad rash on my face. I am on my off week of xeloda (3300 mg - 2weeks on/ 1 week off). So we will see what he says re dosing.

It has been informative to read about the other dosings of this treatment regimen, so when I see my onc I will be able to at least ask him some questions.

Thank you again!
Anne

[Lala]

Welcome Anne
Glad you found this site.
I hope your rash goes away quickly. I had to lower my dose of both drugs in order to get relief. Hopefully your oncologist will be able to tinker with the dose to make it tolerable for you.
Sending you hugs.. hang in there!

[Mykentuckyhome]

hi everyone, Just wanted to to let people know that although I have been taking a reduced dose of both tykerb/ xeloda I had my first scan since being on the drugs and it was all good news. Spots on my liver were fewer and smaller, and although the bone scan is hard to tell a difference I know that the 2 spots I have on my spine are much better due to reduced pain. I was even able to play 9 holes of golf in celebration. So for all of you worried that a reduced dosage might not be effective enough, have faith and all will be well. Yipeeeee! linda