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Old 07-24-2007, 03:39 PM   #1
Joy
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oh my goodness

I am shocked! I just got back from the oncologist to go over scan results for the first time since starting tykerb/xeloda. The doc walked in and said, "you want to see some pictures?" Which she never said before and I don't really like to look at the pictures because it makes it all too real and interferes with my visualizations. I must have looked scared because she said, "they are good and I want you to see." So my sis and best friend and I took a field trip to her office and looked on the computer at the last 2 scans. She explained all I was seeing beautifully and.........50% reduction in tumor burden in liver, lungs look great and ALL liver function tests are......NORMAL for the first time in a looooong time!!!!

I'm still in shock. I said one woman, you Irene, in Florida has been on this for a year and doing well and my onc said, "Why not? Let's think several years and by then there will be another her2 blocker."

So I will turn 40 after all this year and I'm energizing way more than that.

I said when we hugged that she made my whole day and she said I made hers as I'm the first in her practice to be on this combination and for her it is very exciting.

I told her about getting a period and she said, surprisingly, that she felt it was no problem at all because sometimes we treat bc with estrogen and my cells have not seen estrogen for so long that maybe it is helping AND if the estrogen aggravates the cells they will uptake more xeloda and tykerb. So she said since we are monitoring things so closely we will just take it as it comes and it did not worry her at all. And when she is worried it is obvious and her concern is very great and readable.

So I just wanted to share these encouraging results as so many have encouraged me! Thank you so much!
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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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Old 07-24-2007, 03:45 PM   #2
R.B.
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Congratulations.

RB
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Old 07-24-2007, 03:49 PM   #3
Lolly
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Joy, I'm thrilled for you!!! What wonderful, wonderful news. You've made MY day too! BIG HUGS

<3 Lolly
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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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Old 07-24-2007, 03:52 PM   #4
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Joy,

I rather thought from your title that it was good news, and it was. Very happy for you and we all agree with your doctor--there will be plenty of other blockers coming along soon.

Congratulations!
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Old 07-24-2007, 03:57 PM   #5
Barbara H.
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Joy!!
I am so happy for you. This is really great news. I have been following all your posts and I'm glad that this combo is working for you.
Best regards,
Barbara
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Old 07-24-2007, 04:03 PM   #6
doh2pa
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Smile

Oh Joy, you have made my day!!!!! I am thrilled for you. My onc said the same thing about being on this for a long time (years?? I didn't think I had years - what a glorious word - YEARS!!!!) This is the first time I have felt any measure of HOPE in 2 years since my initial mets. We are on the cusp of something very big and wonderful. Congratulations! What are you doing to celebrate?

Donna
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Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 07-24-2007, 04:04 PM   #7
Carolyns
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Joy!!!

This is GREAT news! I am so happy for you. Thank you for sharing!

Love, Hope, and Peace,

Carolyn
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Old 07-24-2007, 04:06 PM   #8
CLTann
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Joy to the world. Ever since I came to this site, I have been following your well-being. I remember well I wrote you about your nice picture. This time my congratulation is much more important -- your health. Enjoy life and have many years to follow. Best wishes.
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Ann

Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 07-24-2007, 04:13 PM   #9
sherri
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Joy you brought joy to this site with your news. I'm soooooooooooooooo happy for you.
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Old 07-24-2007, 04:25 PM   #10
lexigirl
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Joy!!!

Yippee!!! That is such great news! I am smiling!! Yes!! I am so happy that you received such terrific news!

Lexi
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Old 07-24-2007, 04:29 PM   #11
KellyA
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Oh Joy! I am so happy for you!! What terrific news! I hope that you have been able to celebrate with your friends and family! I think of you often and hope that you continue to have success on this combination for a very very long time.

Love, Kelly
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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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Old 07-24-2007, 04:53 PM   #12
Mary Anne in TX
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Unbelieveably GREAT News!!!!! So very happy for you!
ma
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MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 07-24-2007, 04:54 PM   #13
chrislmelb
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Joy, that is such good news. I am so happy for you.
Christine
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Christine

DX Sept 03 age 40 Stage 2B Grade 3 mastectomy (after 2 prior breast conserving surgeries)
"at least" 2.3 cm 3/12 nodes ER+/PR+ Her2+++
8 FEC. Tamoxifen then Arimidex. Ovaries out.
"late" Herceptin for 2 years (18months after chemo) on HERA trial. finished Herceptin Nov 2007.
Multiple bone mets May 2012 and now liver August 2012.
Abraxne, Herceptin and Zometa.
June 2013 Tykerb, Xeloda and Xgeva
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Old 07-24-2007, 05:08 PM   #14
chrisy
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Oh Joy,

I am so happy for you!!!!!! That is fantastic news, I'm so glad to hear you've responded so well and so quickly. I agree with your onc - lets start with 4 years on this one, okay?

Enjoy!
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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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Old 07-24-2007, 05:13 PM   #15
tousled1
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Joy,

That's wonderful news! Guess you found the magic combo!
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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 07-24-2007, 05:32 PM   #16
kareneg
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Smile

I am so happy!!!!!!!!!!! WOO HOO!!!!!!!!!! Here is to many many more great scans. Relax and do something nice for yourself you deserve it.
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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 07-24-2007, 06:11 PM   #17
Beckie
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Joy,
I have been very interested in following your progress since coming to this site, and I am so thrilled for you! How wonderful to think in years!

Beckie
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Diagnosed 4/06, age 55
1.1 cm tumor
Pre-op x-ray caught lung nodules
6/06 - Stage 4, Her2+++, er/pr-
Mets to lungs(largest 3 cm), liver (largest 5.5 cm), and bones
Began taxotere, herceptin, & aredia
7/06 - radiation to lower spine & left shoulder for pain
8/06 - everything smaller
12/06 - stopped taxotere (toe infections)
5/07 - bone mets advancing
6/07 - add navelbine to herceptin & aredia
6/07 - discovered brain mets (3 in cerebellum, largest 2 cm.)
7/07 - WBR, change to Tykerb/Xeloda
9/07 - targeted radiation
10/08 - started navelbine/herceptin
2/09 - brain mets - targeted radiation
5/09 - mets in liver progressing, changed to Ixempra
7/09 - mets in liver still going, to the brain again, on gemzar now
9/09 - gemzar failed, started Doxil today


I know Who holds the future, and I know He holds my hand.
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Old 07-24-2007, 06:15 PM   #18
Patb
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Great news Joy. Wishing you nothing but the best news from now on.
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 07-24-2007, 06:28 PM   #19
lilyecuadorian
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Smile

thanks for sharing it make so so happy
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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 07-24-2007, 06:52 PM   #20
Kimberly Lewis
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Smile

yippie skippie! Great news Joy - thanks for sharing!
__________________
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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