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11-27-2007, 09:37 AM
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#21
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Senior Member
Join Date: Nov 2007
Posts: 210
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Barb.. any updates... how many doses have u received.. what dose are u getting..
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12-20-2007, 07:04 PM
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#22
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Doing Great!!!
Hi Everyone,
I had a bone and cat scan last week and saw my oncologist today. My cat scan looks good and my bone scan indicates that the bones are healing. My tumor markers are great indicators for me and are now both normal. My CEA is now 1.7. I am hoping that it will eventually be under one. This is a great trial and I highly recommend it . It has minimal side effects, and I can live a normal life and continue working. I am on the phase 1 weekly trial.
Best wishes,
Barbara H.
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12-20-2007, 07:58 PM
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#23
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Barbara,
Such great news and couldn't come at a better time of year. Congratulations. Praying for you that the trial continues to give you great results.
__________________
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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12-20-2007, 08:27 PM
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#24
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Senior Member
Join Date: Sep 2005
Posts: 589
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Barbara - FANTASTIC!!!! What great news. A CEA of 1.7 indicates that you are well within the normal range. What a great way for you to celebrate the new year. This appears to be a very exciting new drug and you and Lily are wonderful trailblazers.
Eric
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12-20-2007, 08:59 PM
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#25
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Senior Member
Join Date: Nov 2007
Posts: 210
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this is great news barb... how do they do the weekly dose.
the phase 2 trial dose is 3.6 mg/m2 .. what is the weekly dose you are on...
run to live
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12-20-2007, 10:40 PM
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#26
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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Dear Barbara ...you was one of the main reason to get me on this trail ...when I ask my Doc about trials he mentioned about this and in a second I remember your post ...and get exited ...and ask for it ...after all the test I think I did a great choose because my ct scan are great , my Doc said ...and thanks to you ..I really hope so that another Lady's on this site get in to ..like us ...plus my thoughts was genentech need all her costumer back (because is for patient who herceptin fail) so that way they still doing so a great sales in the future ....congratulalion you ct scan give me more hope ...like mine also give hope for somebody else ...
__________________
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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12-21-2007, 07:13 AM
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#27
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Dear Barbara and Lily - so glad this trial seems to be working so well for both of you! ((Big Hugs)) Wonderful!
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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12-21-2007, 02:03 PM
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#28
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Senior Member
Join Date: Oct 2007
Posts: 47
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Barbara, what great news & wonderful way to start the New Year. You'll continue to be in my thoughts and prayers.
Warm regards, Patrice
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12-21-2007, 06:23 PM
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#29
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Senior Member
Join Date: Nov 2005
Location: Lincoln, Rhode Island
Posts: 371
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Dear Barbara,
What wonderful news I am so happy for you. Have a wonderful holiday. You are always in my thoughts and prayers. Please keep us posted on how you are 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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12-24-2007, 08:52 AM
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#30
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Senior Member
Join Date: Nov 2007
Posts: 210
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marsha.. have not seen you post in awhile.. hope all is well.. how is your treatment going..
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12-29-2007, 04:54 PM
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#31
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Wowee!
Dear Barbara and Lily -
I am a little slow to get over to this part of the forum, but you have both been in my most POSITIVE thoughts and GOOD wishes.
So great to hear good news from you both at a time when we really need it! We know Barbara was a good responder to Herceptin so it was with every bit of faith that you would do will in this new trial.
KEEP on responding, ladies. Maybe with results like these they can fast-track this drug, and more oncs could use it off-label for those not in a trial area.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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12-29-2007, 10:30 PM
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#32
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Member
Join Date: Nov 2007
Location: Minneapolis, MN
Posts: 20
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PTL It's WORKING!!!!!!!!!!!!!
Hi Ladies,
Just wanted to update you. My scans looked great the neck nodes have skriked in to half the size they where. No new ones! Liver is stable, just a little progession in the hips and spine. Not surprised I am sore more often. So I am going into 08 rip roaring to go!!!
God has truly blessed me so many times through this joruney. I am so humbled and grateful for all his love and my friends! Also all of you have been so full of Grace for me. Thank you and have a peace filled new year!
__________________
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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12-30-2007, 07:38 PM
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#33
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Barbara, Lily and Marsha,
Great news on your scan results!!! As Marsha above says, go into '08 rip roaring!
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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12-30-2007, 07:59 PM
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#34
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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For MPB
Hi MPB,
You may just be sore. In the beginning the bone scans can show progression even when the cancer is not progressing. You will probably need to wait for a few more scans before you can determine what is going on. I have been on the trial since September and the CT and bone scan is finally showing response to treatment.
This is what my most recent CT scan on 12/20 indicated:
"Metastatic involvement of the bones is apparent, with areas of increasing sclerosis in comparison to prior study, possibly a treatment effect."
My bone scan indicated: There has been a slight decrease in the intensity of the radiotracer uptake associated with lesions in the right clavicle and the right hemipelvis. The additional lesions, including the one in the T11 and L1 vertebral bodies appear unchanged.
While this does not sound great, my tumor markers are now normal, and they are an excellent benchmark for me. I have the sense that it takes a while for these scans to show measurable response in the bones.
Best wishes,
Barbara H.
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01-15-2008, 09:41 AM
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#35
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Senior Member
Join Date: Nov 2007
Posts: 210
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marsha.. how was your first treatment..
runtolive
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01-23-2008, 03:10 PM
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#36
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Senior Member
Join Date: Nov 2007
Posts: 210
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barb.. how has your treatment been going.. long time no hear...
runtolive
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01-25-2008, 04:22 PM
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#37
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Everything is going well. I had a CT scan and bone scan today. There is really no news and nothing to post until I receive the results of these tests.
Thanks for thinking of me.
Barbara
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01-26-2008, 07:39 AM
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#38
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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can't wait to hear
the good news!
__________________
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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01-27-2008, 06:43 AM
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#39
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Senior Member
Join Date: Nov 2007
Posts: 210
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hopefully the drug wipes out all the pain in your bones... like you say .. feels like its working. stay strong..
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01-27-2008, 10:42 AM
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#40
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Senior Member
Join Date: Jun 2007
Posts: 34
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mcc- dmi trial
I am very much interested in this trial. Can anyone tell me about it? What are the requirements ? I had taken hercepton for over 2 yrs. till I had progression. Please anyone? Are these trials at certain places? Thanks linda
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