High Dose Tykerb Experiment - wish me luck!

[CourtneyL]

Hello lovelies - Its been a while since I've posted a thread but I thought some of you might be interested in my latest little experiment. As you can read from my signature, I've had another bout with brain mets recently. All else seems to be going well - we'll scan brain and body again in a few weeks to confirm that I'm coasting.

In the meantime, my doc and I have decided to try a little experiment to see if we can't find a way to keep me from getting new brain mets. I'm already taking Tykerb so we decided to play around with the dosage a little.

UCSF has a clinical trial where they are looking to see if a few days of high dose Tykerb, followed by a few days off, is a more effective way of administering the medication. The theory of some scientists there (Dr. Moasser) is that it is a much more effective drug in high doses but can only be tolerated for so long because of GI side-effects like diarrhea.

Rather than join the trial, I'm running my own self-experiment, with my doctor's permission of course, to see if this might work for me. I'm going to work up to 3500 mg/day for 5 days followed by a 9 day rest cycle. So far I'm on day 3 and have worked up to 3000/mg per day. I'll take the larger dose tomorrow and Tuesday and then I'll take 9 days off before repeating. Hopefully diarrhea won't be too much of an issue and I'll be able to give this a try for a little while to see if it just might make a difference.

I'm curious if anyone else has any experience with this or has been on the trial? Thoughts? Am I crazy?