HER2 Support Group Forums - View Single Post - Update on chrisy

chrisy · 05-04-2011, 02:15 PM

Hi there her2 family,

I've been hesitating to post this news for many reasons...probably mostly because I didn't want to admit it to myself but also because I don't want to discourage anyone about what I still consider a GREAT drug (TDM1).

Looks like my LONG 3 year ride with TDM1 is winding down. Although of course I knew it wasn't "the cure", you all understand how I hoped it might be anyway

My scans in December showed some questionable areas, which have been (pretty much) confirmed by the latest scan to be progression of one or two of the same old dumb tumors.

I was somewhat prepared for this, and to be taken off the study post-haste; I was not prepared for "let's do another scan in 6 weeks (which will be June 1) and in the meantime keep you on study for the 2 more treatments"!

I always feel like a dope in the presence of my brilliant Dr. Hope, but particularly so this time! I didn't even get clear WHY the move to do one more scan. I'm guessing she's curious as to why after 3 years the canser has developed resistance to TDM1, and/or maybe having a little more info will inform her better about the best options from here. And it wouldn't hurt for her to have me "top of mind" at ASCO

So I find myself in search of input from all my wonderful Her2 family as to what's interesting out there (besides TDM!).

First thought from the onc was Tykerb/Herceptin which is very attractive to me in remission - not as much with active disease

I know a lot of folks have had experience with this, so I'd appreciate your thoughts.

Also, those ladies who have pushed the envelope and pursued localized treatment of liver mets via resection, RFA or other means! Interestingly, Dr. Hope has never been a proponent of this in my case but I caught her thinking out loud about the possibility, since it is the SAME stupid mets waking up.

Lani, I saw your post yesterday re tykerb or herceptin still can benefit after TDM1. Good timing for fraying nerves!

Anyway, I just want to say again:
IF you have the opportunity to try TDM1, I still think it's a great drug. Do it. I was reminded that 3 years is a "long time" and although she agreed when I said "it's not enough", it still is true. It has bought me 3 more years of research that hopefully will yield more answers for us.

Ho hum...saddle up...canser sucks...NED can be a flake.

Love to all
Chris

05-04-2011, 02:15 PM	#1
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	Liver met Update on chrisy - where's NED???? Hi there her2 family, I've been hesitating to post this news for many reasons...probably mostly because I didn't want to admit it to myself but also because I don't want to discourage anyone about what I still consider a GREAT drug (TDM1). Looks like my LONG 3 year ride with TDM1 is winding down. Although of course I knew it wasn't "the cure", you all understand how I hoped it might be anyway My scans in December showed some questionable areas, which have been (pretty much) confirmed by the latest scan to be progression of one or two of the same old dumb tumors. I was somewhat prepared for this, and to be taken off the study post-haste; I was not prepared for "let's do another scan in 6 weeks (which will be June 1) and in the meantime keep you on study for the 2 more treatments"! I always feel like a dope in the presence of my brilliant Dr. Hope, but particularly so this time! I didn't even get clear WHY the move to do one more scan. I'm guessing she's curious as to why after 3 years the canser has developed resistance to TDM1, and/or maybe having a little more info will inform her better about the best options from here. And it wouldn't hurt for her to have me "top of mind" at ASCO So I find myself in search of input from all my wonderful Her2 family as to what's interesting out there (besides TDM!). First thought from the onc was Tykerb/Herceptin which is very attractive to me in remission - not as much with active disease I know a lot of folks have had experience with this, so I'd appreciate your thoughts. Also, those ladies who have pushed the envelope and pursued localized treatment of liver mets via resection, RFA or other means! Interestingly, Dr. Hope has never been a proponent of this in my case but I caught her thinking out loud about the possibility, since it is the SAME stupid mets waking up. Lani, I saw your post yesterday re tykerb or herceptin still can benefit after TDM1. Good timing for fraying nerves! Anyway, I just want to say again: IF you have the opportunity to try TDM1, I still think it's a great drug. Do it. I was reminded that 3 years is a "long time" and although she agreed when I said "it's not enough", it still is true. It has bought me 3 more years of research that hopefully will yield more answers for us. Ho hum...saddle up...canser sucks...NED can be a flake. Love to all 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 Last edited by chrisy; 05-05-2011 at 10:12 AM..