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12-14-2006, 06:31 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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Any Tykerb trials for post Herceptin users?
I saw one posted for those who had not had herceptin, and were early stage. I would like to find a trial for after Herceptin - stage 3 ER/PR+. I have been searching clinicaltrials.gov and haven't seen anything yet. Just wondered if anyone knows of a trial I missed. thanks, Kim
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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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12-14-2006, 07:20 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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I am also interested, but doubt very much that there is anything for previous herceptin users. Not yet, anyway. Hopefully some day.....soon.
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Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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12-14-2006, 08:35 AM
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#3
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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No...
there isn't one, but if you look at my post and Joe's response, it sounds like there may be some possibility once it is FDA approved in the spring, that maybe some oncs may give it for NON metastatic off label (Michele U is persuing it this way). Take care and God bless.
Rhonda
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Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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12-14-2006, 11:56 AM
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#4
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Senior Member
Join Date: Jul 2006
Location: Pasadena, CA
Posts: 32
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I am on a tykerb trial and I had herceptin
In fact I would not have been able to get in the trial had I not had herceptin. I am currently on tykerb/xeloda.
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Dx. 01/31/05 Lt. invasive ductal carcinoma
2/14/05 lumpectomy
4 ac, 4 taxol
10/11/05 lumpectomy for microcalcifications
10/31/05 lumpectomy for clear margins
Radiation
03/06 Herceptin
05/06 Dx. Lt IBC
05/06 Lt. Mastectomy
7/06 Gemzar/Carboplatin
09/06 Navelbine
No organ or bone mets
Chest lymph node involvment
10/06 Tykeb/Xeloda
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12-14-2006, 01:42 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Colorado
Posts: 131
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Kimberly -
Interestingly enough, Lisa's trial is Xeloda and Tykerb without Herceptin. We had to stop herceptin treatment to start the trial. Based on this 'd have to say that yes there are post-Herceptin trials!
Love and Light
Mel
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Mel Gordon, Husband of Lisa Lowe - Queen of Love and Light and the bravest person I know!
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12-18-2006, 02:40 PM
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#6
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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Thanks Mel, I will continue to search and "fight" on....
__________________
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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12-18-2006, 03:51 PM
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#7
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Senior Member
Join Date: Sep 2006
Location: Savannah, Georgia
Posts: 301
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Tykerb
I have spoken to my onc several times about Tykerb. He did say that he was expecting it to be availabe in Feb/March off label. He said he would give it to me off label, but could not guarantee that insurance would cover it. I expect that it won't. I am in the middle of rads now and have had 14 weeks of Herceptin at this point. I will be about half way through the Herceptin if it comes available in March. does anyone know the general cost of Tykerb? Is it comparable to Herceptin?
Kelly
__________________
dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED
"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."
-Eleanor Roosevelt
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12-18-2006, 09:06 PM
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#8
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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KellyA,
I don't think there is a price available for it yet as the FDA has not approved it. I did read the company's statement that their goal was to make it as "affordable as possible." The fact that it is in pill form and does not require infusion will make it much less expensive than Herceptin (which may as well be liquid gold) to begin with.
Hopeful
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01-13-2007, 10:01 AM
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#9
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Senior Member
Join Date: Nov 2005
Location: Hilton Head Island, SC
Posts: 279
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trying another approach...
I saw a trial in Greensboro listed and talked to one of the women in the screening process. She suggested I get a 2nd opinon from the Onc who was in charge of the trials to get a foot in the door. I go 2/2/07. Will let you know how that goes.
__________________
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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