Thread: I'm in the club
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Old 05-03-2007, 11:09 AM   #2
chrisy
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Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Joy

Oh goody, I've always wanted to be in a club with you - you are my idol. Sounds like you had mostly good news - maybe even better than you expected. I know you can beat the crap out of the liver progression!

On the tykerb/diarrhea (I just learned how to spell that word, by the way), I'm not on Xeloda - so I don't know how much of that "problem" is due to that vs. the Tykerb. I do know that I have been on it for a little over one week and have only had what I would describe as "a little loose". (TMI?) I've felt so left out of the crowd that I have been experimenting to see if I could do a little bit better...um worse...

What I've found is that it seems to be relate to how long the drug is in my stomach ALONE. The instructions say empty stomach, 1 hour after and before eating. I've been taking it in the morning, so on a completely empty stomach and have found that the longer I wait before eating, the greater the problem. I've done my oh-so-scientific testing by moving the time earlier and earlier in the am. So now I'm practically sleepwalking to slug those puppies down!

On the other hand, it could just be that my body has SO FAR tolerated it and it will all go to crap (so to speak) the longer I'm on it! Or maybe it's that I'm also on Avastin which can cause constipation so it all evens out!

The really exciting news is today I think I have some pimples on my nose - wahoo!
]
Joy, I also have a feeling that you will respond well to this drug. And just think, if it blasted your liver mets before it will send them into oblivion with this extra kicker!

Keep us posted!

Much love
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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