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01-29-2007, 05:16 AM
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#1
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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How to get in on trails or off label use of Tykerb?
Want opinions on this please.
I know that the size of my tumor and the number of involved lymph nodes puts me at "extremely high risk" of recurrance. (to quote my last Onc) I feel that merrits a higher rate of vigilence. Therefore I started looking for Tykerb trial for post Herceptin stage 3 cancer. The person at GSK told me to get a 2nd opinion from the Onc that was doing the clinical trials here locally and I might be first in line to get in on the trials for early stagers when they start. Does this make sence to you guys? I hate to sound so desperate - chasing an Oncologist who will treat me more aggressivly but I come by this feeling from my readings here! It seems many on this site are much more inclined to treated at a higher level that the standard protocols for BC. My appointment is this Friday...
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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01-29-2007, 07:56 AM
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#2
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Senior Member
Join Date: Sep 2006
Location: Originally from Boston, Ma now reside in Deltona, FL
Posts: 30
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I have very similar situation to yours; Just finished my year of herceptin (actually a treatment short due to
large decrease in my EF) I asked my onc about staying on longer anyway and he said no way....I have information from a friend of a friend in Boston (I live in Florida) who is in a trial for tykerb due to cardiotoxicity from herceptin) but I am not sure whether or not she has mets...my oncologist said she must be stage four because he knows of no trials for tykerb otherwise....I have done some limited searching on the net and have only come up with trials for tykerb for met. breast cancer....I too feel the urgency to continue with some form of maintenance because I know of other women with similar protocols and staging who have become metastatic after just 3 months off of the herceptin....
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01-29-2007, 08:07 AM
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#3
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Hold Tight...Tykerb should be FDA approved by mid-March at the latest. It is then up to your onc to determine if you will benefit.
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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01-29-2007, 09:24 AM
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#4
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Senior Member
Join Date: Sep 2006
Location: Originally from Boston, Ma now reside in Deltona, FL
Posts: 30
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Thanks, Joe....I hope it gets approved ASAP...however, I still worry that they will only pay for it in a metastatic situation, which I am desperately trying to avoid in the first place !!!
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01-29-2007, 07:39 PM
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#5
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Senior Member
Join Date: Dec 2005
Location: Illinois
Posts: 327
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I just saw a post about tykerb with stage 3b... i think it was on the breastcancertrials.com website. I also noticed some for early stagers.
__________________
Jan04: Bilateral Mastectomy at age 28
Initial DX: Left Breast: IDC 2cm, Grade 3, HER2+3, 0 Nodes +, ER/PR-. Right Breast: Extensive DCIS ER-/PR+; Stage 1-2a
Feb04-Apr04: 4 AC, dose dense
Aug 04: 4 Taxotere
Dec 05: Bone and Liver METS; Stage 4. Carboplatin/Taxol/Herceptin. DX with Li-Fraumeni Syndrome
Apr 06: NED, maintenance Herceptin
Apr 07: CA1503=14; masses in liver; Xeloda/Tykerb
Nov 07: NED, Tykerb maintenance
Sept 08: Liver mets again, on Tykerb/Xeloda again, CA=19 and 27
Nov 08: Progression, Tykerb/Gemzar, CA=25
Dec 08: Progression, Herceptin/Navelbine, CA=40, 57, and 130
Jan 09: Progression in bone, recession in liver, Herceptin/Carbo/Abraxane CA=135
June 09: CA27/29=24, chemo break
Sept 09: Progression, CA=24, waiting on clinical trial (4 weeks no treatment)
Nov 09: now have brain mets, trial "on hold", getting 14 WBR treatments starting 11/2/09
Dec 09: possible start on p53 trial
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01-29-2007, 08:13 PM
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#6
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Senior Member
Join Date: Nov 2004
Location: Henderson, NE
Posts: 413
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Kim and Juli
I thought the new trials for Tykerb are for women that have not been on Herceptin? I wonder if they told you that when you called them
__________________
Michele Ulmer
dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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01-29-2007, 08:43 PM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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I read that early stagers who have not had herceptin were considered on the trial.
As Joe said, hold on it is coming in March.
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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01-30-2007, 02:21 AM
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#8
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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So far every trial available is for people who have not taken Herceptin according to GSK when I spoke to them. That is why they told me to go see this Onc who does trials - so when one comes up I might have a foot in the door already... it was just a suggestion not a guarentee.
__________________
Kim
Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes
BRCA 2 positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara
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