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08-11-2006, 12:34 PM
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#1
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Started Tykerb/xeloda Today
Well, the day finally arrived and I met with my oncs office yesterday for them to "HAND OVER" the Tykerb. What a whirlwind of paperwork passing hands back and forth and finally opening up officially as at EAP compassionate use site. I believe they are one of two in Florida so far. The other is M.D. Anderson in Orlando for any of you that live in this area. They plan on getting many more opened up and I pray your locations open up soon for those of you that are waiting.
I took my first dose this a.m. of both to follow with dose of Xeloda this evening.
Ladies, I am praying for myself and well as for all of us that this is our MIRACLE DRUG. There are many more to follow if not.
I THINK I CAN NOW START CONCENTRATING ON MY TRIP.
Good luck to us all.
Everyone take care ...
__________________
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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08-11-2006, 12:43 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Irene, I am so happy to hear you finally got your Tykerb.  I can't wait to hear how the Tykerb and Xeloda is your miracle combination! Hopefully now that you got that all out of the way you can relax a little bit and totally focus on your vacation as you so deserve it. Now go have some FUN Irene!
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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08-11-2006, 12:51 PM
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#3
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Thank you Chelee
I will post pictures when we return.
I AM SO looking forward to this...
__________________
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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08-11-2006, 01:01 PM
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#4
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Irene,
I am saying a prayer that this will be the miracle drug for us. I am so happy that you are receiving this drug and am very hopeful for a great outcome.
I hope you have a wonderful time in Italy.
Love and Prayers,
Lexi
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08-11-2006, 03:50 PM
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#5
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Irene,
I am also praying for you and all of us and I am so happy for you! Have a wonderful trip too!
__________________
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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08-11-2006, 04:28 PM
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#6
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Yeah! Can you feel it working? I can!!
Have a great weekend and a great trip.
Becky
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08-11-2006, 04:41 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Maryland
Posts: 31
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Irene,
So glad you have your drugs...I can hear the relief in your post to be back on something to start fighting the dieseae back again. Have a wonderful trip and I pray this is your miracle drug!
Judie
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08-11-2006, 07:51 PM
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#8
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Senior Member
Join Date: Jul 2006
Location: Memphis, Tennessee
Posts: 35
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Irene,
I am so happy for you! I am so glad you have been able to take this step. I look forward to hearing about the fantastic results and about your trip.
Love and prayers, Kathy H
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08-11-2006, 09:02 PM
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#9
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Irene, so very, very happy for you! I know your trip will be MUCH more enjoyable knowing you're not "naked" so to speak  You are now an official TYKERB TRAILBLAZER, and leading the charge for all of us!
<3 Lolly |
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08-11-2006, 10:33 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Irene,
Postive energy being sent your way...and many prayers - Enjoy Italy....
Warmly,
Jean
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08-12-2006, 12:11 AM
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#11
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Senior Member
Join Date: Nov 2004
Location: Streetsboro, Ohio
Posts: 365
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Hi Irene, It's great news that you have started your new treatment. I might be right behind you in the next few weeks. I had appt. today with onc. to get results of ct. scan. Things are still pretty much stable with 4 cycles of xeloda. I've been put on the list to receive tykerb along with xeloda. My case just has to go before a committee and then it's a go. I hope you have a marvelous trip. You deserve it. Love and Blessings, Lu Ann.
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08-12-2006, 05:25 AM
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#12
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Irene
You are our leader in this new venture...I am so glad everything is resolved with the Tykerb and you can concentrate on your trip....it sounds like an easy combo to take...let us know.
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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08-12-2006, 08:31 PM
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#13
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Senior Member
Join Date: Feb 2005
Location: Wisconsin
Posts: 159
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Irene--that is wonderful about your Tykerb! Please let us all know how it goes, and what side effects you experience. Many of us will be watching the progress of you and the others who are starting to use it. I am only one of many on this site you will probably want to be on it at some point.
Good luck :-)
__________________
BLOG:
http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *
6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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08-13-2006, 06:49 AM
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#14
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Appreciate your good wishes
I want to thank everyone for all of their good wishes and support. I love you all.
Let's all pray for some good results from this new drug for all of us.
Sandy H and Luann, its so good to hear that you are both so close now to joining the study. Good luck to you both and a speedy process.
I am actually going to spend the day today thinking and getting ready for this trip. YIPEEEEEEE
Take care.
__________________
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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08-13-2006, 08:33 AM
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#15
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Irene,
It sounds as if you are doing well handling this combo so far. Now enjoy all the preparations for your trip and have lots of olive oil while you are there. My daughter went on her honeymoon to Italy two years ago. She said the fresh figs were delicious in September.
Best wishes,
Barbara H.
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08-13-2006, 11:16 AM
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#16
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Irene,
Congratulations on finally receiving the Tykerb. You are now the official explorer for this group. Please keep us informed as I'm sure many of us will be following down the same path. Enjoy your vacation!
__________________
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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08-13-2006, 11:27 AM
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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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Woo-hoo! To finally have those little puppies in hand - what a relief! I'm joining you in the prayers that this drug will bring miracles for all of us, especially you and those so close now to starting. Have a wonderful trip.
__________________
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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08-13-2006, 01:29 PM
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#18
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Senior Member
Join Date: Nov 2005
Posts: 943
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Praying the drugs work miracles for you. Go girl.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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08-17-2006, 09:17 PM
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#19
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Senior Member
Join Date: Sep 2005
Location: Los Angeles
Posts: 430
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Irene,
I've been following your notes here about your ordeal to get approved.
I'm gald that you got it thru your perseverence.
God Bless, Have a good trip
XOXO
MCS ( maria)
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08-18-2006, 04:45 AM
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#20
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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Irene-
Welcome to the club. I get scanned net week, so keep your fingers crossed.
I am so glad you were able to get it before your trip - now go and have some gelato, espresso and pasta for all of us!
Take care,
Shell
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