HER2 Support Group Forums - View Single Post - T-DM1

chrisy · 06-12-2008, 09:11 AM

Hi Eric,

Wow, that's a very tough situation. I know you want to fight for the drug because it is beating the cancer...while at the same time, Caryn is really struggling with this debilitating side effect. It sounds like its a major QOL issue.

As you know, Herceptin stays in the system for some time so this is likely also the case with T-DM1. They say the drug clears quickly but this is not always true. So although I know you must be imagining rampant progression in the absence of treatment, this may not be the case.

Of course, Genentech is going to be very very careful about serious adverse effects and this is why they are withholding treatments. I wonder, is feeling that YOU are not able to make the decision making it worse? I know I just about flipped out when I thought I was about to be kicked out of my trial.

It seems that all you can do is wait, hope and pray that Caryn's situation gets better soon and she can resume treatment. And make sure your doctor knows you want to continue in the trial as soon as possible, because as I learned your desire to continue does make a difference.

Hang in there my friends
Chris

06-12-2008, 09:11 AM	#5
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	Hi Eric, Wow, that's a very tough situation. I know you want to fight for the drug because it is beating the cancer...while at the same time, Caryn is really struggling with this debilitating side effect. It sounds like its a major QOL issue. As you know, Herceptin stays in the system for some time so this is likely also the case with T-DM1. They say the drug clears quickly but this is not always true. So although I know you must be imagining rampant progression in the absence of treatment, this may not be the case. Of course, Genentech is going to be very very careful about serious adverse effects and this is why they are withholding treatments. I wonder, is feeling that YOU are not able to make the decision making it worse? I know I just about flipped out when I thought I was about to be kicked out of my trial. It seems that all you can do is wait, hope and pray that Caryn's situation gets better soon and she can resume treatment. And make sure your doctor knows you want to continue in the trial as soon as possible, because as I learned your desire to continue does make a difference. Hang in there my friends 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