Xeloda and Tykerb along with/Dex

hezzy · 01-12-2011, 05:02 AM

My schedule is upside down and I'm no longer sure what to do to find something to work. Any advice would be great.
Im taking steriods four times a day and suppose to take them six hours apart. On top of taking Xeloda twice a day 10 12 hours apart, than Tykerb whenever. I talked to the ONC and she said I could put the time closer together so I get sleep, but when I do that I'm only getting a few hours of sleep a night.
Im taking amoxicillen just because on top of all of this I have an ear infection, and today Im feeling like my throat is ready to explode it just feels swollen.

They told me they wouldn't know if the DEX is helping push fluid away from the brain tumor so the other two drugs will help me or not for another month if that. I have to admit I'm worried I never even heard of it. I'm just lost and can't even think of what to do .... or if I'm diong anything worth it.

Mary L · 01-12-2011, 09:04 AM

Hezzy, I am so sorry you are going through all of this. Is anyone helping you? I have been praying for you and hoping things get easier for you. Best Wishes! Mary L

Trish · 01-12-2011, 04:42 PM

Oh Hezzy I'm sorry things are so difficult right now. The things you are doing are very worthwhile. Unfortunately I found Dex a very difficult drug: it made me disorganised, impulsive overactive and scattered-not to mention the awful effect on sleep. I took it as an anti -nausea agent and I understand you are taking it to reduce swelling, so the amount may be very different. On top of everything else you have earache and an extremely sore throat. Little wonder you are feeling so lost and miserable. Take the advice about timing the Dex so you can get as much sleep as you can. Were you given anything to help sleep? Try and get as much of a routine happening as you can and try to enjoy the little sleep you can manage. I'm hopeful that you will start to get better as the drugs start to take effect and perhaps the amount of Dex will then be able to be reduced. Do keep communicating to your doctors just how difficult you are finding this time.
I'm thinking of you often and hoping things are getting easier. Thanks for posting.
Trish

Jackie07 · 01-13-2011, 12:10 AM

Hezzy,

I think the sleep problem has more to do with the treatment of the brain mets. I've had brain tumor(s) my whole life and always have sleeping problems. The sleep-awake cycles are controlled by the right and left Thalamus and they are right in the center of the brain.

About the medicine schedule - I believe you can make a schedule to take all of them during a 12-14 hour schedule from 8 am to 8(or 10) pm.

Just remember to take the antibiotic (amoxicillen) with food (such as after every meal and a snack before bedtime) so it won't hurt your stomach. Most medicine can be taken every 4 hours. So I would suggest to take the Dex early in the morning and then every 4-5 hours after the first dose (how about before each meal?) Take Xeloda after breakfast (or a mid morning snack if it needs to be apart from the antibiotic) and then after supper.

Take Tykerb every night after supper or any other set time that's easy for you to remember.

Make a simple grid and check off the medicine you've taken just so you can get a visual que (or you can record it on your calendar). I've found it handy to use the alarm schedule on my cell phone as reminders. But I have problem remembering whether or not I've taken it after the alarm goes off - especially if there's other interruptions such as a phone call. So try to take your meds at a set time that's easy to remember and count your pills if that will help. (I also use a 7-day pill box as a safeguard)

I am sensing some anxiety here - especially about the effectiveness of the treatment for your brain mets. Steroid such as DEX helps reduce swelling and is important to curb the side effect from the radiation treatment. Tykerb and Xeloda have been standard treatment for brain mets because the molecule of Tykerb is small enough to penetrate the blood-brain barrier. There are trials going on right now on the combination of Herceptin and Tykerb and other new drug and new combinations.

We've got several members here on the Board that have beat brain mets and either are on maintenance or been NED (think of Christine, the founder of this support group) So hang in there.