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Old 03-22-2007, 05:50 AM   #1
Shell
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Join Date: Sep 2005
Location: Philadelphia
Posts: 301
Eric-

I'm not surprised to hear your onc say this treatment is minor, but I am really surprised to see the side-effects your nurse listed - it is absolutely the H/F syndrome and the diarrhea that are the MAJOR impediments to feeling good on this combo...

I am prone to mouth sores anyway and never had that as a side effect. Moreoever, I was never nauseous or queazy re food at all.

I strongly recommend that you go to the www.xeloda.com site and print out their treatment diary. Because the meds are oral, you don't see the onc as much, and it really gets hard to remember day to day what you were feeling. The best cream that I found was the udderly smooth udder cream, which my local drugstore carried. I also took the b-6, and as I was on xeloda with or w/out tykerb for over 15 months, immodium ad became my good friend as well.

Please be sure to report the onset of any H/F immediately to your onc, as there may be options to reduce the dosage to manage the symptoms. You'll hear differerent mg of the xeloda people take, but remember it is based on body weight/mass, so unless you know their weight, you're comparing apples and oranges. The original dosage I thinkwas 2500mg/m2, but from the archives here you'll see people have done well on less than that....

I was in the clinical trial that led to approval for tykerb, and I wish your wife only the best on it!!!

Good luck w/ things,
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Shell

init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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Old 03-22-2007, 04:24 PM   #2
Joy
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Location: Ft. Collins, Colorado
Posts: 546
eric and caryn

I'm so glad you have a plan of action. I think that helps the psyche some. I am also thrilled to hear about your oncs attitude regarding using tykerb and herceptin! I will be anxious to hear how that goes. I had xeloda with taxotere and I could always tell which was the xeloda vs. the taxotere side effects. I also had xeloda 5ish years ago when the dosing was just HIGH and caused problems. Oncs are better about playing with that on an individual basis now. I had hand/foot syndrome pretty continuously and diarrhea for the first 2 weeks-bad too, but again it was a huge dose. I had some mouth sores off and on and definitely that was better with the lower dose. It was quite effective for my huge big liver mets. I think Caryn will do just fine and be able to tolerate it all and get rid of that dumb cancer again!
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joy

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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