Thread: Recent update
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Old 06-06-2009, 05:39 PM   #12
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Smile Doin fine!

Hi Irene,

I was also worried about being DQ'd from the continuation trial, for me it is elevated liver enzymes. I still also have low platelets, usually at the lower level of normal. But my onc nurse assured me there was NO WAY this would happen. After all, one of the purposes of the trial is to assess long term S/E, so they need all of us old lab rats!

Any S/E that didn't cause you to drop from the parent trial shouldn't prevent you from entering the continuation trial if you are receiving benefit from the drug (which you clearly are!)

Funny thing for me was, my LFT's were so consistently high (you remember my liver cleansing ritual of daily beet juice and carrot salad!) that now I'm back on the 3 week schedule. They restage prior to entering the continuation trial, so my elevated LFT's are my new normal! So that keeps me within treatable range. Although I'm still diligent with the beet juice and carrot salad, I do sneak in a glass of wine now!

The schedule is much less intense - no interim office visits. That is great for me since I had a 75 mile commute and I really was not happy getting up at 5am every Monday! Scans are also much less frequent...which of course NOW scares me even though before I thought they were way too frequent! I have scans at the end of June (let the scanxiety begin!)

So, doing well over all - and again, I'm SO glad this is working so well for you!!!!

take care
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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