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08-29-2006, 09:11 AM
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#1
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Tykerb is in my hands!!!
I am happy to let you all know I finally, have tykerb in my hands and should start it tomorrow. They were suppose to call in the Xeloda but no one did it so did it last night and hopefully, will be here today. Now, who is next??? We need to do lots of praying it will work!! hugs, Sandy
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08-29-2006, 09:14 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Yea Sandy!!!!
I am SOOO happy for you AND the others that have gotten the Tykerb. My prayers are ALWAYS there. Take care and God bless.
Rhonda
__________________
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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08-29-2006, 09:19 AM
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#3
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Senior Member
Join Date: Mar 2006
Posts: 87
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Great news! Here's to an excellent result!
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08-29-2006, 09:25 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
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wow Sandy! Thanks for being a pioneer in this. Will you be able to continue taking the Herceptin as well?
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08-29-2006, 09:47 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Woo hoo for you. Your persistance paid off royally.
Big hugs to you
Becky
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08-29-2006, 09:56 AM
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#6
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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Sandy, congrats..........persistance wins again. Good luck on your treatment.
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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08-29-2006, 10:12 AM
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#7
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Sandy,
I am hoping this will be the magic bullet to get rid of those skin mets for good!! Really excited for you.
Hugs,
Lexi
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08-29-2006, 11:18 AM
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#8
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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A job well done!! I discussed your and everybody elses problems with GSK and they promised to make access a lot easier.
FYI They told me that they plan to open 300 trial sites for the EAP program.
Regards
Joe
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08-29-2006, 11:53 AM
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#9
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Sandy,
Congratulations! Hopefully this will take care of your skin mets. My thoughts & prayers are with you.
__________________
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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08-29-2006, 11:55 AM
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#10
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Sandy - I am praying this is the thing for you!!! I am so happy you got it!!!
Maryann
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08-29-2006, 01:59 PM
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#11
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Deceased
Join Date: Mar 2006
Location: Virginia
Posts: 113
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Tykerb is in my hands!!!
Sandy,
I am so happy for you Honey. I hope that this along with all of our prayers will be the answer to resolving your skin mets. I am praying diligently and sending good thoughts your way.
Love & Hugs,
Nicola
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08-29-2006, 02:37 PM
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#12
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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Finally
Woo-hoo, Sandy! your tenacity and smarts are inspirational. we trust you'll keep us posted. All my happy thoughts your way!
love,
joy
__________________
with love and gratitude,
joy
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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08-29-2006, 05:32 PM
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#13
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Sandy,
You have my prayer's! I am so happy for you!
__________________
Love and Hope
Karen
IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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08-29-2006, 06:13 PM
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#14
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Senior Member
Join Date: Oct 2005
Posts: 823
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YEAH, WONDERFUL news Sandy. I sure hope this is the one for you. Prayers for you.
__________________
Vicki
Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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08-29-2006, 06:52 PM
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#15
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Way to go Sandy. I can't wait to hear how great it works for you. Thoughts and prayers. Bev
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08-29-2006, 06:58 PM
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#16
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Esther, I have to take it with Xeloda for now. Hopefully, if it gets released later we can change over and use it with Herceptin. That is the only way Tykerb is available in Maine is with Xeloda. I am happy to be able to use it this way even though my oncologist and I don't like Xeloda. I hope I can tolerate it for a few months. I will keep everyone updated. Thanks for all your lovely posts. A big thanks to Joe for his help. Now, the ground work is done here and so the next ones to get it should be a breeze. I am glad by my going first and being able to wait that long for all the paper work to be done will perhaps save some ones life that could not wait 10 weeks. My oncologist told me this was the hardest one he has ever done!!! hugs, Sandy
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08-29-2006, 08:12 PM
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#17
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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YAY! I knew they wouldn't DARE put you off any longer! I hope this does the trick for you. Thanks for sharing your journey on this - it made me ask my oncologist if he had Tykerb yet, and told him it was taking a really long time for folks. Maybe your experience will help smooth the way for others.
Prayers for a quick and durable response.
Love
Chris
__________________
Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial
5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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08-29-2006, 08:42 PM
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#18
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Sandy, wonderful news!!! What's your dose of Xeloda? As you may know, I'm on a low, low dose (500 mg 2x's daily) which has caused NO side effects for me and has kept me stable. Perhaps if your dose is high, your onc might consider lowering it initially to see how tolerable it is with the Tykerb, or are you having to follow a protocol to be eligible for the EAP program?
<3 Lolly
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08-30-2006, 06:04 AM
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#19
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Member
Join Date: Jul 2006
Location: Ft. Bragg N.C.
Posts: 14
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Sandy,
Congratulations!
I too am on tykerb...I pray for all of us that it is the magic bullet! 
Steph |
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08-30-2006, 06:45 AM
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#20
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Senior Member
Join Date: Feb 2005
Location: Norridgewock, Maine
Posts: 778
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Lolly, I am on 3000 mgs a day. He did have to apply to get it lowered as it called for 3300 mgs. They only come in 500's so it would mean breaking one in half and he said, "no way". He will watch me closely and when I start to have problems he will decrease it and he says he can do that once I have been on it for a while. I used this amount back in 2003 and I did well for 3 months, except it did not work for me, and then when I stopped it my hands and feet peeled and I could not wear shoes-fun in November with snow on the ground!!! People thought I had lost it when they saw me walking with slippers that had thick bottoms. I will keep you all posted. That is great it has kept you stable Lolly, I hope, I can say the same! hugs, Sandy
Last edited by Sandy H; 08-30-2006 at 06:47 AM..
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