HER2 Support Group Forums - View Single Post - A teary and embarrassing moment

chrisy · 05-30-2008, 07:55 PM

I hear you on the "exended vacation" issue. I DID have a scheduled "day off" that fell right in the middle of our planned vacation in August... on the other coast. Now I think it might even be an infusion day.

Of course, even as I whine about that, I pray that I will still be fortunate enough to be on this study in August - and in fact, to the end of the year! We all would do anything and everything to stop this disease but I don't feel guilty about bemoaning the inconvenience to my schedule because the whole reason we are doing this is because we are GREEDY for life and to enjoy it as well.

Today I found out from my trial coordinator that 3 people in the USCF trial had this happen this week, so I guess I'm not alone. I also understand why she just sent me a list of the appointments that need to be scheduled, rescheduled, or cancelled and asked me to do it myself. Trying to deal with all these schedules X 3 would probably make HER have a meltdown...and also be persona non grata with the schedulers.

Maybe we should have an appointment swap meet!

Barbara, thank you so much for your encouragement.

Chris

05-30-2008, 07:55 PM	#40
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	Hey Barbara I hear you on the "exended vacation" issue. I DID have a scheduled "day off" that fell right in the middle of our planned vacation in August... on the other coast. Now I think it might even be an infusion day. Of course, even as I whine about that, I pray that I will still be fortunate enough to be on this study in August - and in fact, to the end of the year! We all would do anything and everything to stop this disease but I don't feel guilty about bemoaning the inconvenience to my schedule because the whole reason we are doing this is because we are GREEDY for life and to enjoy it as well. Today I found out from my trial coordinator that 3 people in the USCF trial had this happen this week, so I guess I'm not alone. I also understand why she just sent me a list of the appointments that need to be scheduled, rescheduled, or cancelled and asked me to do it myself. Trying to deal with all these schedules X 3 would probably make HER have a meltdown...and also be persona non grata with the schedulers. Maybe we should have an appointment swap meet! Barbara, thank you so much for your encouragement. 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