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chrisy · 03-31-2009, 09:52 AM

Cathy,
I think Flori's post was a hoax! Although I can support the notion of reducing a dose especially when traveling (and not kinowing where all the best restrooms in town are!)

I had tykerb but with avastin (so no chemo). The study I was on was for 6/day, I took them first thing in the morning because you have to take them on an empty stomach and I wanted to have my full evening snack window open. In retrospect, I would probably have been better off without the snack, but that's another story.

I was on a study, so had to follow the rules, but the "standard" dose is 5 pills/day and when taken in combination with Xeloda, it seems like many people had to reduce the Xeloda dosage but for the most part the Tykerb part was doable.

If this is your next step, I think you will find it pretty tolerable. Brenda's our poster girl for this combo, she has great advise for managing the side effects. Check on the Tykerb/Herceptin forum for discussions on side effects, but remember we were probably "over reporting" as it was a relatively new treatment.

03-31-2009, 09:52 AM	#5
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	Cathy, I think Flori's post was a hoax! Although I can support the notion of reducing a dose especially when traveling (and not kinowing where all the best restrooms in town are!) I had tykerb but with avastin (so no chemo). The study I was on was for 6/day, I took them first thing in the morning because you have to take them on an empty stomach and I wanted to have my full evening snack window open. In retrospect, I would probably have been better off without the snack, but that's another story. I was on a study, so had to follow the rules, but the "standard" dose is 5 pills/day and when taken in combination with Xeloda, it seems like many people had to reduce the Xeloda dosage but for the most part the Tykerb part was doable. If this is your next step, I think you will find it pretty tolerable. Brenda's our poster girl for this combo, she has great advise for managing the side effects. Check on the Tykerb/Herceptin forum for discussions on side effects, but remember we were probably "over reporting" as it was a relatively new treatment. __________________ Chris in Scotts Valley June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?" 9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++ 10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response! 04/05 - 4/07 Herception every 3 wks, Continue NED 04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial 06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin 01/08 Progression in liver 02/08 Begin (TDM1) trial 08/08 NED! It's Working! Continue on TDM1 02/09 Continue NED 02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED 12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver 07/11 - 11/11 Herceptin/Xeloda -not working:( 12/11 Begin MM302 Phase I trial - bust:( 03/12 3rd times the charm? AKT trial 5/12 Scan shows reduction! 7/12 More reduction!!!! 8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!) 9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3 11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc 11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go. 2/13 Gemzar/Carbo/Herceptin - no go. 3/13 TACE procedure