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Old 06-11-2007, 11:45 AM   #1
StephN
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Location: Misty woods of WA State
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Me too

Hi -might get more responses if the question was asked on the main board.

My scalp was VERY sore for months and months. This was during and after taking 27 rounds of Taxol, Navelbine and Herceptin for my mets. It took a long time to resolve. Just washing my hair vigorously hurt. Ever heard of taking a tylenol before washing you hair? I had to do that so I could get through the washing, conditioning and drying process.

My med onc said that complaint was not very common when I mentioned it.

Hair cuts also had to be done gingerly for a while.

P.S. I also had some headaches in front right area of my head. Not like a normal headache. Onc said this WAS a common complaint.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-12-2007, 09:09 AM   #2
Joy
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me too

My scalp feel sore off and on and it reminds me of the times I've lost my hair, which is often accompanied my scalp soreness. I hope I don't lose my hair on ty/xel. And Flori, I'm so glad you posted because I had been noticing that my freckles, brown spots and barnacles (as my mother calls those little raised skin things) are darker. I thought it was my imagination or just by virtue of being summer they darkened. And I know it isn't just in my head because a friend thought my face seemed more freckly. So I find it so interesting that you have noticed this too!

I'll be anxious to hear about anyone's test results and of course thinking the very best!
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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 06-12-2007, 04:39 PM   #3
Lolly
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I've had a sore scalp off and on for several weeks now, and my hair has been thinning quite a bit. Don't know if it's the Abraxane or Tykerb, but I suspect Abraxane as hair loss is listed as a side effect.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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