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Old 01-29-2009, 06:36 PM   #3
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Dear Carolyn,

Sometimes it's hard to interpret the inclusion/exclusion rules for these studies. Seems like you always have a little too much of A or not quite enough B...Hope you find you are able to qualify.

I've been on DM1 for 1 year - it is a different trial than the one you are going for, so I can't comment on what the protocol will be for that one. The one I'm in was treatment every 3 weeks, (now every 4 for me due to liver tox - but that's another story).

The killer part for me - I also have a long commute (1 1/2 hours vs 10 minutes to my local!) - was that the trial I am in also requires weekly labs and office visits. Also scans every 2 cycles. So it's a lot of travel time. Maybe yours would be different.

As far as side effects, it is not a hair challenging regimen (yay!). I feel a bit flu-like on day 3 or 4 after treatment, and also have occasional and very mild neuropathy and nosebleed similar to with other chemos but less bothersome. DM1 affects platelets in nearly everyone, but they typically rebound quickly. Elevated liver enzymes are also common and for most people not too problematic; for me it has been a bigger issue and although I have no symptoms it has impacted my treatment schedule.

So, overall it is not as "easy" as plain vanilla herceptin...and this is especially true for the cancer, which is the most important part. When it works, it is a great drug and reports out of San Antonio last month on my trial showed really strong response rates even in heavily pretreated patients.

I hope you are able to get your hands on this weapon.

Chris
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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
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