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Old 04-18-2011, 03:54 PM   #1
ElaineM
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Wink Emila (T DM1) Clinical Trial

http://www.emiliaclinicaltrial.com/
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12 years and counting
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Lucky 13 !! I hope so !!!!!!
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14 Year Survivor
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Old 04-18-2011, 09:06 PM   #2
StephN
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Re: Emila (T DM1) Clinical Trial

Hi Elaine - thanks for the reminder post. Our "schoolteacher" is one member who is on that trial.
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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 08-15-2011, 01:29 AM   #3
Kayakr01
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Re: Emila (T DM1) Clinical Trial

My fiance is a new patient to this trial, in week 4, at Siteman Cancer Center in St. Louis, MO. It is starting to get very tough. She drew the 'Capecitabine and Lapatinib' regimen, which we believe was unfortunate considering the positive comments about the TDM-1. Thus far, we have dry skin, sore feet, blisters, diarrhea, numerous chancre sores, and now heavy chills. I welcome dialog with others in this study.

Bob (Kayakr01)

Last edited by Kayakr01; 08-15-2011 at 01:34 AM.. Reason: clarify post
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Old 08-15-2011, 07:08 PM   #4
Jackie07
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Re: Emila (T DM1) Clinical Trial

Hi Bob,

There are several threads about the side effect of Tykerb (Lapatinib) and Xeloda (Capecitabine). The thread below contains a detailed posting by Brenda:

http://her2support.org/vbulletin/sho...kerb+skin+rash

ps. You can locate any past thread using the 'Search' function on the top bar.
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Last edited by Jackie07; 08-15-2011 at 07:12 PM..
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