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chrisy · 10-05-2009, 09:42 AM

Tough decision for sure. After nearly 2 1/2 years, no wonder Ruth is ready to be done and move on to the rest of her life! To be honest, I have no idea how I would answer the question she is facing.

What I do know, from the report at SABCS on the early trials of Neratinib, is that it does work differently than either Herceptin OR Tykerb, and is presumed to cross the BBB so that may be protective in case any of the little buggers escaped herceptin.

The diarreah side effect seems to be nearly universal on this drug; however the data reported out at San Antonio indicated there had been NO discontinuation of treatment due to this. The implication of this being that people learned to "manage" it, much as most people do on Tykerb. Of course, the population in this study was all metastatic patients so there was probably a bias towards learning to tolerate the treatment if it might be working!

Terri, you and Ruth have been through a lot with this and I understand why the doubts. Do what feels right for you (Ruth).

Take care
Chris

10-05-2009, 09:42 AM	#3
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	Re: Neratinib Trial Tough decision for sure. After nearly 2 1/2 years, no wonder Ruth is ready to be done and move on to the rest of her life! To be honest, I have no idea how I would answer the question she is facing. What I do know, from the report at SABCS on the early trials of Neratinib, is that it does work differently than either Herceptin OR Tykerb, and is presumed to cross the BBB so that may be protective in case any of the little buggers escaped herceptin. The diarreah side effect seems to be nearly universal on this drug; however the data reported out at San Antonio indicated there had been NO discontinuation of treatment due to this. The implication of this being that people learned to "manage" it, much as most people do on Tykerb. Of course, the population in this study was all metastatic patients so there was probably a bias towards learning to tolerate the treatment if it might be working! Terri, you and Ruth have been through a lot with this and I understand why the doubts. Do what feels right for you (Ruth). Take care Chris __________________ 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