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Old 03-31-2009, 09:52 AM   #1
chrisy
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Location: Central Coast, CA
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Cathy,
I think Flori's post was a hoax! Although I can support the notion of reducing a dose especially when traveling (and not kinowing where all the best restrooms in town are!)

I had tykerb but with avastin (so no chemo). The study I was on was for 6/day, I took them first thing in the morning because you have to take them on an empty stomach and I wanted to have my full evening snack window open. In retrospect, I would probably have been better off without the snack, but that's another story.

I was on a study, so had to follow the rules, but the "standard" dose is 5 pills/day and when taken in combination with Xeloda, it seems like many people had to reduce the Xeloda dosage but for the most part the Tykerb part was doable.

If this is your next step, I think you will find it pretty tolerable. Brenda's our poster girl for this combo, she has great advise for managing the side effects. Check on the Tykerb/Herceptin forum for discussions on side effects, but remember we were probably "over reporting" as it was a relatively new treatment.
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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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Old 03-31-2009, 09:57 AM   #2
Ceesun
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thanks for the good info--hopefully the 4 tykerb will move things in the right direction. You gals are a real lifeline....and the men, too!!!!
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Old 03-31-2009, 09:59 AM   #3
Julie2
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Ceesun,

I take 5 pills a day in the morning with empty stomach. I am on Herceptin and Tykerb.

Julie
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Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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