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Old 01-03-2008, 08:38 AM   #41
tousled1
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Lily and Marsha,

Congratulations to both of you! Sounds like this trial is just the magic bullet that you both needed. Please keep us posted.
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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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Old 01-03-2008, 04:34 PM   #42
runtolive
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do u know the other lady in the trial.. or how she is doing..

run to live ..
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Old 01-10-2008, 02:32 PM   #43
runtolive
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BARB.. YOU OUT THERE.. how you been doing..
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Old 01-10-2008, 03:44 PM   #44
lilyecuadorian
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Run to olive I think the other lady is stage IV bone mets and she is doing good and she have one side effects that I didn't get it and is nausea I will ask again next cycle ..i let you know
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 01-11-2008, 04:28 AM   #45
hermiracles
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Hello Lily and all the ladies on this trial ~ Trastuzumab-MCC-DM1. Im glad it seems to be going well for you.

Would someone mind explaining the basics of the trial to me or providing a link where I can read about it? Not that I could participate being in Australia - but I would just like to understand more.

BIG prayers and hope everyone continues to get great results!
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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Old 01-11-2008, 07:56 AM   #46
lilyecuadorian
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Hermiracles Please refer to this study by its ClinicalTrials.gov identifier with this number : NCT00509769 hope you are continued doing good with herceptin !!!
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 01-13-2008, 08:15 AM   #47
runtolive
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how are you doing with your treatment.. keep fighting..
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Old 01-15-2008, 07:42 AM   #48
hermiracles
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Hi Lily! Thanks for that link - it was a big help.

Can you tell me is the Trastuzumab-MCC-DM1 different from the usual Herceptin? - just wondering. Hope you dont mind all the questions.

All the best with your trial.

Your kids are gorgeous!
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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Old 01-15-2008, 07:52 AM   #49
runtolive
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miracles... tras-dm1 has a toxin attached to the HERCEPTIN..
the herceptin delivers the toxin to the cancer and then the toxin attempts to kill the cancer..
lily and a few others are in two different dosing regimens with TRASTUZUMAB-DM1. DNA has a once a week trial and a once every 3 weeks trial..
it appears their cancer is not progressing. this is awesome news...hopefully they are able to keep us updated on their progress as they defeat this disease..

run to live..


patients like lily, barb, and marsha are true warriors in our fight against this horrible disease. they have been fighting for a long time.. we can only hope they stay strong and positive in their fight..
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Old 01-17-2008, 10:02 PM   #50
kareneg
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Smile

Lily,

How are you doing?
__________________
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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Old 01-23-2008, 01:15 PM   #51
MPB
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Posts: 20
Hi

Hi ladies!

Sorry I have been out of the loop, my computer went in for a check up and needed a new' motherbroad" so that was two weeks.... Have miss catching up with all of you. Had my 4th infusion that went so so... I keep gettin the chills and then the sweats??? anyone else?? I have next scan first week in Feb. so will see if all is still going well!!! How is Lily and Barb doing with this??? Went and saw the grandbabies thispast weekend my how fast they grow! Okay enough about me take care!


hugs!
Marsha
__________________
MPB
IDC in 1996 Stage 3 Grade D 17 pos. nodes
2003 liver mets found HER2 Her/Taxol then did the first trail for Trykerb and Xelosa until 11-07
Six new tumors on neck will be starting the MCC_DM1 trail this week.

"Believe in miracles, and watch them happen!"
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Old 01-23-2008, 09:30 PM   #52
lilyecuadorian
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well I got my results ...brain clear and everything else clear except the one on my liver ( 2cm) and the half (2.3 cm) still the same ..Doc thinking that is stable he said is a good news ...I really was waiting for a clear results ..but he said that still 13 treament to go ...(just got 4) monday I will get my #5 and Marsha YES I got some sweats too and some running eye and nose ...fatigue but only the first week ...second week, better and 3th week, normal ...Marsha your results are going to be OK too ...or why not clear .....
__________________
Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 01-24-2008, 03:58 PM   #53
kareneg
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Location: Lincoln, Rhode Island
Posts: 371
Smile

I am so happy for you Lily and stable is great news!!!!!!!!!!
__________________
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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Old 01-25-2008, 02:22 PM   #54
runtolive
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Posts: 210
lily.. i spoke with a friend about your trial.. she was asking for info about it at her docs office.. this oncs office said they had done a handful of patients with trastuzumab-dm1 and their patients loved it... in general terms she said all their patients were doing great and highly recommend it if your eligible..
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Old 01-25-2008, 03:01 PM   #55
lilyecuadorian
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Location: CHARLOTTE NC USA Home town (ECUADOR) South America
Posts: 542
In case someone need in NC here is my Doc inf.
Steve Limentani
1100 S Tryon St, suite 400
Charlotte, NC 28203
phone # is :704-446-9046
and the email address is : margot.church@carolinashealthcare.org
ask for Margoth Church a very nice nurse ....
I hope this inf.really help !!!!
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 02-05-2008, 12:35 PM   #56
runtolive
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Posts: 210
Smile info on tras-dm1

When the Herceptin antibody binds to a tumor cell expressing HER-2, the Herceptin/DM1 complex is internalized. The intracellular environment favors freeing of the DM1 from the antibody, makes the DM1 active, and kills the cell," Dr. Schwall said.
Three Breast Cancer Models
The conjugate was tested in three models. The first was a line of MCF7-HER2 human breast cancer cells engineered to express high levels of HER-2 and transplanted into nude mice. The conjugate caused complete tumor regression in all mice treated, while trastuzumab alone only slowed tumor growth. This experiment was repeated several times, with 9 to 10 mice per group. "With the conjugate, all of the tumors just disappeared," Dr. Schwall said.
The second model was nude mice transplanted with MDA-MB-361 breast tumor cells, which naturally express high levels of HER-2. As in the first experiment, the conjugate induced complete tumor regression in all 10 mice treated, while unconjugated trastuzumab only slowed tumor growth.
The third model was mammary tumors from MMTV-HER-2 transgenic mice transplanted into the mammary fat pads of 10 nontransgenic nude mice. The transplanted tumors grew aggressively and were allowed to reach 100 mm³ before treatment was initiated. "For reasons we don’t understand, Herceptin is not very effective against these tumors, even though they express high levels of HER-2," Dr. Schwall said.
When the mice were treated with the trastuzumab/DM1 conjugate, tumors regressed by more than 90% in all mice within 20 days. This effect was seen only in tumors overexpressing HER-2. "The tumors shrink and stay small for 60 to 70 days then start to grow back. When we treated them again, they responded again at similar levels," he said.
Maximal efficacy in this model was seen at a DM1 dose of 300 µg/kg, which corresponds to about 18 mg/kg of the conjugate, given once a week for 5 consecutive weeks. "These results show that Herceptin/DM1 has better activity than Herceptin alone in both Herceptin-responsive and Herceptin-resistant breast tumor models," Dr. Schwall said.
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Old 02-06-2008, 12:03 PM   #57
runtolive
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how has your treatment been going..
hope all is well..

run
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Old 02-06-2008, 06:56 PM   #58
MPB
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Location: Minneapolis, MN
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Update

Well ladies I had my scan ALL CLEAR NOT ONE LITTLE TUMOR!!!!!! I know how good God has been to me! Thank God for new drugs!
Hope all is well just touching base.

hugs and peace
__________________
MPB
IDC in 1996 Stage 3 Grade D 17 pos. nodes
2003 liver mets found HER2 Her/Taxol then did the first trail for Trykerb and Xelosa until 11-07
Six new tumors on neck will be starting the MCC_DM1 trail this week.

"Believe in miracles, and watch them happen!"
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Old 02-06-2008, 09:21 PM   #59
lilyecuadorian
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Posts: 542
great ....is fantastic ...great news !!!!!
__________________
Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 02-07-2008, 06:21 AM   #60
eric
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Posts: 589
What great news!!! Congrats and enjoy!!!
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