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Tykerb/Xeloda experience

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ljmiller View Drop Down
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    Posted: Jun 04 2008 at 9:54am
Hi all~
I got news from my scans from last week. Good news was my organs/bones are still unaffected, (yeh!) but there was some growth in my abdominal/pelvic lymph nodes (again). Have been on 5 tabs of Tykerb daily for 1 1/2 mths, + 1x every 2 wk Avastin infusion. According to dr., my liver is irritated from the Tykerb; he's reducing the dosage to 3 tabs, and adding Xeloda. Was wondering if anyone else has had this combo, and/or what kinda of side effects (and success) from the Xeloda?
Thanks!
Leslie

*Diagnosed Stage IIb - 8/04
Neo-Adju Chemo-ACT/Taxol, lumpectomy, 36 rad. treatments
Recurr Diagnosed Stage VI - 2/07 (originally thought to be OC, but ruled out)
Carboplatin/Abraxane, Taxotere/Avastin
Currently on Tykerb daily; Avastin every 2 wks


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EWKSeattle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 11:15am
Hi Leslie,
 
For me, Xeloda side effects were pretty manageable.  I had hand-foot syndrome -- mostly just red, peeling soles of my feet.
 
I haven't been on Tykerb.  I was under the impression that it's for Her2+ tumors only.  Do you know whether your onc thinks it has some action in triple negative?
 
Thanks!
 
Elizabeth 
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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ljmiller View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ljmiller Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 11:26am
I asked that very question because I had seen it advertised that way; he seems to think that it was approved for HER+, but they are seeing benefits from using it in HER-. He explained that even originally Avastin was approved for colon and lung cancer, but BC patients are also benefiting from it.

I had hand/foot syndrome reaction with the Taxotere (hands only), how did you remedy that?

Thanks for your response!
Leslie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 5:53am

Interesting.  I did some searching on the web, and it looks to me like Tykerb hits Her2 and the EGFR receptor (which is Her1).  About 2/3 of triple negative tumors overexpress EGFR/Her1.   Mine does, which is why I've done Tarceva, and will start Erbitux on Monday.  I wonder why they aren't trying Tykerb on more of us triple negatives?

For my Xeloda feet (and my Taxotere feet), I used a really rich, thick shea butter cream.  I found it lasted longer than the udder cream.  I was told that the key is just to be sure there isnt any alcohol in whatever you use, as it has a drying effect.
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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ljmiller View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ljmiller Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 7:00am
Good info, thanks for sharing. Excuse my ignorance here, but how/where did you find out about your particular tumor info; was that on your pathology report or did that come from your oncologist? I have been Triple Neg since my first diagnosis at Stage II, but am unaware of other particulars.

How long were you on Xeloda? I used the udder cream on my hands but I did not like the scent, and it seemed to burn, probably due to my hands being inflamed anyway. I'll remember the shea butter cream, just in case!

Thanks for your help!
Leslie

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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 7:19am
My onc routinely tests all triple negative tumors for EGFR, so it has been part of all my path reports.  Most oncs do not test for it in BC, as there are no EGFR drugs that are actually FDA-approved for BC, but that may change as there are clinical trials in progress on some EGFR inhibitors like Cetuximab (Erbitux).
 
I did Xeloda with Avastin for 4 months, then alone for a month, and then did it again for a couple of months with Taxotere and Sutent.  The worst hand foot syndrome occurred while I was doing Taxotere and Xeloda together, since both tend to cause it.  That's the only time it was ever actually painful, and boy was it painful.  The shea butter cream I used was a hand cream by Pre de Provence.  It was very soothing and you can get it in a lavender scent, though I used the plain kind because I was afraid any scent might trigger a skin reaction.  I got in in boutique-type shops here, but it's also available on the internet.
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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