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Old 08-25-2007, 08:21 AM   #1
Joy
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sandy-me too

I'm glad you shared cause I'm having similar stuff. And have been on it for about 10 weeks. I just try to think that it is still being aggressive, but today and yesterday the itcing is driving me a little crazy and I have had success with aveeno hydrocortisone cream. Of course the scalp thing is still a problem. Sometimes I feel like a monkey.
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dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 08-27-2007, 01:05 PM   #2
Daisypink
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Location: Staffordshire, England
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me too

Hi

I am so glad i spotted this thread as i was going post about this.. i'm on the LEAP trial over here in England (very lucky to get it), Xeloda/Tykerb 2 weeks on 1 week off - tykerb continiuosly.. i've just completed cycle 3.. i'm on 3300mg of xeloda and 1250mg tykerb.

It seems i also have the Tykerb rash over the weekend.. it started off on my neck like a heat rash and it was itchy, now its dried up and it looks like eczema. I have little patches of it on my face and also on my scalp.. thats very sore.

I phoned my hospital and my oncologist has susggested i try putting the udderly smooth cream i have on it and take some piriton.. hope i'm doing right.. does anyone know if they reduce the dose because of this.. i hope not..

I just read that if you get the rash its a good sign that its working for you.. is this right?? how do we know this??

does anyone know??

Lots of love jakki
x
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DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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Old 09-19-2007, 08:09 PM   #3
awjkej
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Hi Jakki,

I experienced very similar side effects as you. The rash on my face was so bad and painful, that I went down to 1000mg from 1250mg and that worked. My arms and feet began to be very painful and sore, tender so I am now down to 750mg. I have to day though that the difference between the 1000 mg and the 750 mg is neglible, whereas the dropping to 1000mg made a huge difference.

I do the 3 week on 1 week off and 3300mg of xeloda.

My onc told me that tykerb is metabolized differently by each woman and that a liver enzyme cytochrome p450 is involved with the process. He said that some women are on 250 mg up to 1500mg depending on what they can tolerate. So it is my understanding that it isn't a one size fits all dosage for tykerb.

Hope this helps.
Anne
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Diagnosed Jan 2003
Bilateral Mastectomy (right prophylatic) Feb 2003
No reconstruction and no prosthesis - what you see is what you get :-)
6 rounds A/C ending August 2003
Tamoxifen til October 2004
Bone mets diagnosed October 2004
Herceptin (weekly) & Zometa (monthly) December 2004 - June 2007
Arimidex, Faslodex
Oophorectomy October 2005
Rads to left hip November 2005 - December 2005
Zometa quarterly now January 2007
Taxotere December 2005- July 2006
Tykerb (1250 mg) and Xeloda (3300mg) July 2007
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