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Old 10-23-2007, 12:03 PM   #1
Stephanie B.
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Join Date: Nov 2006
Location: Bakersfield, CA
Posts: 66
New to Tykerb/Xeloda

Hi there

I just found out yesterday that I have new liver mets after months of shrinking. My onc has taken me off of herceptin/taxol and is now going to put me on Tykerb/Xeloda. He did tell me that my hair should start to come back and that the constipation should go away and I would probably get the diaherra and would have skin issues. Can anyone give me an idea of what else to expect. I guess a plus to all of this is that I don't have to be a "human pin cushion" every week anymore!

Thanks in advance for any advice.

Stephanie B.
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Old 10-23-2007, 01:07 PM   #2
chrisy
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Location: Central Coast, CA
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Hi Stephanie,
I saw your post on the main forum, and there's a lot to say for a reprieve from being a human pincushion.

I'm on Tykerb/Avastin, so don't have the same side effect profile as Tykerb/Xeloda, but I have a little bit of input - read through some of the posts, there is a lot of info.

With this, you will get hair back again. Tykerb has to be taken on empty stomach, Xeloda with food. So you will have a busy schedule keeping track.

Tykerb side effects are mainly diarreah (someone named it "pooterookies"), which people have been able to manage with Immodium and with dietary adjustments. Brenda swears by the BRAT (bananas, rice, applesauce and toast/tea) diet, and you may want to stay away from milk products.

That said, I've had some bouts of this, but it hasn't been every day and has responded well (thank goodness) to immodium when needed.

The other Tykerb side effect is many people get some sort of rash, usually acne-like. There's lots of discussion on various remedies for this.

Xeloda's worst side effect seems to be hand/foot syndrome, which causes painful skin problems. Again, lots of discussion on what to do to combat that.

All in all, it seems to be easier to take than what you've been on. I've found Tykerb is easier on the heart than Herceptin and my LVEF has improved.

The most important thing, tho, is that people have had great results!

Keep us posted
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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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