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chrisy · 07-13-2007, 01:49 PM

Grace, the same thing happened to me- they kept reporting it as "normal" but no number (so not very helpful in monitoring until it is "not normal"!). So I don't really even have a baseline for what my LVEF was before I got on this roller coaster!

One thing that can happen (esp if you are a "technically difficult" read due to an implant) is that the tech will not even get that measurement. Hence, I let them know that NOBODY leaves the room until they've got it done. I got to where the first thing I said when I arrived was OK I'm here to get that LVEF, we're going to get it and it's going to be easy! Then I made the tech put notes all over everything to make sure the cardiologist got the message.

Although I like to think I was responsible for their remarkable turnaround, it could also have been after I complained to my onc, he called over there, read them the riot act, and told them he would start sending all his patients somewhere else! Regardless, I get the number now.

07-13-2007, 01:49 PM	#2
chrisy Senior Member Join Date: Sep 2005 Location: Central Coast, CA Posts: 3,207	I second that~! Grace, the same thing happened to me- they kept reporting it as "normal" but no number (so not very helpful in monitoring until it is "not normal"!). So I don't really even have a baseline for what my LVEF was before I got on this roller coaster! One thing that can happen (esp if you are a "technically difficult" read due to an implant) is that the tech will not even get that measurement. Hence, I let them know that NOBODY leaves the room until they've got it done. I got to where the first thing I said when I arrived was OK I'm here to get that LVEF, we're going to get it and it's going to be easy! Then I made the tech put notes all over everything to make sure the cardiologist got the message. Although I like to think I was responsible for their remarkable turnaround, it could also have been after I complained to my onc, he called over there, read them the riot act, and told them he would start sending all his patients somewhere else! Regardless, I get the number now. __________________ 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