HER2 Support Group Forums - View Single Post - Update - progression confirmed; the last shoe drops

chrisy · 06-13-2011, 06:21 PM

Well goils (and boys),

I've hesitated to post - and will just HATE updating my history....but my June 1 Pet/CT confimed I have at least one very lively and growing liver met and a node that is lit up like a christmas tree. So I'm officially "off" the T-DM1 study after 54 treatments - over 3 years. A fabulously long ride...but of course still not long enough. Greedy little girls, aren't we?

So, I'm in the process of choosing a new horse to ride - and fortunately there are several options.

As the most aggressive option, I'm screening for a small study with Taxol (bye bye hair), Herceptin, and MK2206 which is an AKT inhibitor. The hope is (if I can qualify - I'm dancing close to the edge of several exclusion criteria) that would shrink things down and then we would go after the node (and maybe the met) locally. It is the SAME old dumb tumor every time, maybe it just needs the horcrux treatment.

Next choices would be Herceptin/Xeloda or Herceptin/Tykerb, but as we're looking for shrinkage (where's George Costanza when you need him?), the taxol mix might be better. And as the others are all FDA approved, these would be options anytime, not so with the new study drug.

Taxol/Carbo/Herceptin slapped my liver mets into remission back in 2004, maybe it can repeat the performance, along with the AKTI. I saw some interesting info on the AKTI's in San Antonio - yet another piece of the puzzle perhaps.

So yes, I am majorly bummed about the TDM1 as you can imagine. BUT I still think it is a fabulous drug and would continue to encourage people to fight like hell to get it.

So...calling all prayer warriors, propeller heads, any ideas or good thoughts are welcomed.

06-13-2011, 06:21 PM	#1
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	Update - progression confirmed; the last shoe drops Well goils (and boys), I've hesitated to post - and will just HATE updating my history....but my June 1 Pet/CT confimed I have at least one very lively and growing liver met and a node that is lit up like a christmas tree. So I'm officially "off" the T-DM1 study after 54 treatments - over 3 years. A fabulously long ride...but of course still not long enough. Greedy little girls, aren't we? So, I'm in the process of choosing a new horse to ride - and fortunately there are several options. As the most aggressive option, I'm screening for a small study with Taxol (bye bye hair), Herceptin, and MK2206 which is an AKT inhibitor. The hope is (if I can qualify - I'm dancing close to the edge of several exclusion criteria) that would shrink things down and then we would go after the node (and maybe the met) locally. It is the SAME old dumb tumor every time, maybe it just needs the horcrux treatment. Next choices would be Herceptin/Xeloda or Herceptin/Tykerb, but as we're looking for shrinkage (where's George Costanza when you need him?), the taxol mix might be better. And as the others are all FDA approved, these would be options anytime, not so with the new study drug. Taxol/Carbo/Herceptin slapped my liver mets into remission back in 2004, maybe it can repeat the performance, along with the AKTI. I saw some interesting info on the AKTI's in San Antonio - yet another piece of the puzzle perhaps. So yes, I am majorly bummed about the TDM1 as you can imagine. BUT I still think it is a fabulous drug and would continue to encourage people to fight like hell to get it. So...calling all prayer warriors, propeller heads, any ideas or good thoughts are welcomed. __________________ 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; 06-13-2011 at 08:21 PM..