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07-20-2006, 08:38 PM
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#1
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Legal Rights Teleconference
The HER2 Support Group is in contact with Ms. Barbara Schwerin of the Cancer Legal Resource Center. http://www.lls.edu/academics/candp/clrc.html
She has agreed to be our first teleconference guest.
I am trying to get a feel for the best day of the week and time for this event.
Any ideas?
Regards
Joe
__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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07-21-2006, 04:58 AM
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#2
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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I am extremely interested in participating in the teleconference. There are a lot of women on the board who work full-time so I imagine that an evening teleconference would be the best. Either that or a weekend.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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07-21-2006, 06:24 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Central Florida
Posts: 503
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I also work and have little ones- evenings are best (any day)
maria
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07-22-2006, 07:26 AM
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#4
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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I work during the day Joe
so evenings would work best for me.
Thanks Joe
__________________
Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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07-22-2006, 11:56 AM
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#5
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Senior Member
Join Date: Apr 2006
Location: FLORIDA
Posts: 148
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Evenings or weekend sounds good to me. I know I am very interested in learning more about my rights.
__________________
SHEILA (45)
09/2005--BREAST CANCER/8 POS NODES --A/C, MASTECTOMY,TAXOTERE, RADS, TAMOXIFEN,HERCEPTIN
02/2007--B/C METS TO OVARIES--HYSTERECTOMY, FASLODEX
12/2007--ENLARGING LYMPH NODES IN ABDOMEN--IXEMPRA, THEN TYKERB
08/2008--COLON TUMOR--A/C AGAIN,
12/2008--ABDOMEN TUMOR--AVASTIN/NAVELBINE FEMARA
05/2009--MET TO SPINE (L2) RADS
CURRENT TREATMENT
07/2009- START ZOMETA MONTHLY, XELODA & ABRAXANE......SURVIVING THE BEST I CAN
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07-22-2006, 05:51 PM
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#6
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Senior Member
Join Date: Oct 2005
Posts: 476
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From the past discussions, my understanding is that the legal assistance is in the are of job, insurance, absence, leave, etc. As I working person, I will very much like to attend the teleconference. Anytime will suit me, since my husband can sit in for me. He has been writing for me in most of the medical related mails.
The format I have seen at the BreastCancer teleconference last Wednesday evening should be suitable. One moderator probably should be present so that the event can be conducted under control. Questions are submitted for orderly replies within the time frame.
Ann
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07-23-2006, 11:37 AM
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#7
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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More info
For those who did not see the latest issue of CURE magazine, there is some further contact info about this resource center.
The Cancer Legal Resources Center is part of the Disability Rights Legal Center.
Their web address is www.disabilityrightslegalcenter.org
I found it encouraging to know that this Cancer Legal Resources Center is part of a larger organization with some overlapping support.
So take heart and learn about your civil and legal rights as a cancer survivor.
Some of the members here are single and have no one else to depend on in these or other financial matters. Hopefully this organization will provide a prop when you need one.
__________________
"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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07-23-2006, 10:06 PM
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#8
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Guest
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evenings please
this is very exciting. i look forward to participating.
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07-24-2006, 07:12 AM
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#9
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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evenings for me. I'm in Eastern Standard Time. MJO
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