HER2 Support Group Forums - View Single Post - High Dose Tykerb Experiment

CourtneyL · 02-14-2011, 07:21 PM

Thank you all for the encouragement and advice. So far, so good. I'm experiencing some appetite loss (bummer since I have a fun dinner planned tonight for Valentine's Day with the hubby) and some diarrhea but so far it is manageable. Only 1 more day until the off period begins!

To answer some questions, we based our protocol on this abstract presented at ASCO a few years ago:

http://www.asco.org/ASCOv2/Meetings/...stractID=31533

The study there describes a 14-day cycle with 5 days of Tykerb and 9 days off. Starting dose was 1750 mg and went as high as 7000 mg! For my experiment, 3500 mg is really as high as we can go given that insurance only approves a daily dose of 1250 mg (5 pills). So that's where the number came from. No real science to it.

Okay, off to enjoy Valentine's Day. I'll update y'all when I have some news to share. Take care and thanks again!

02-14-2011, 07:21 PM	#15
CourtneyL Senior Member Join Date: Aug 2008 Location: San Francisco Posts: 260	Re: High Dose Tykerb Experiment - wish me luck! Thank you all for the encouragement and advice. So far, so good. I'm experiencing some appetite loss (bummer since I have a fun dinner planned tonight for Valentine's Day with the hubby) and some diarrhea but so far it is manageable. Only 1 more day until the off period begins! To answer some questions, we based our protocol on this abstract presented at ASCO a few years ago: http://www.asco.org/ASCOv2/Meetings/...stractID=31533 The study there describes a 14-day cycle with 5 days of Tykerb and 9 days off. Starting dose was 1750 mg and went as high as 7000 mg! For my experiment, 3500 mg is really as high as we can go given that insurance only approves a daily dose of 1250 mg (5 pills). So that's where the number came from. No real science to it. Okay, off to enjoy Valentine's Day. I'll update y'all when I have some news to share. Take care and thanks again! __________________ 4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++ April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response! Sept 08-Dec 08: Herceptin +Zometa for maintenance. Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait. April 09: Gamma Knife 10 brain mets, add Xeloda. Sept 09: Gamma Knife to 1 brain met. Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa. May 10- Sept 10: HER2 Vaccine Trial Sept 10: Add Tykerb for more brain mets. Oct 10: Gamma Knife to 7 brain mets. Dec 10: Switch from Zometa to Denosumab. Jan 11: Gamma Knife to 3 brain mets. March 11: Gemzar/Herceptin for lung/bone progression. April 11: More brain mets - Intrathecal Herceptin June 11: Ixempra/Herceptin for lung, soft tissue progression. Aug 11: Gamma Knife Sep 11: Abraxane/Herceptin Future: NED Send me a PM if you'd like to follow my journey on Caringbridge.