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10-09-2007, 09:35 AM
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#21
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Senior Member
Join Date: Oct 2005
Posts: 215
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Wow, what a day you had. So happy you have a good plan of action though, sounds like you have a really good team behind you. I will keep you in my thoughts and prayers, Jeanette
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10-09-2007, 09:49 AM
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#22
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Dear Vanessa,
You remain in my thoughts and prayers.
The Tykerb Tigers will be ready when you are!
Love, Hope, and Peace,
Carolyn
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10-09-2007, 11:02 AM
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#23
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Member
Join Date: Mar 2007
Location: Indpls, IN
Posts: 12
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Damn the cancer...it pisses me off.
__________________
Jean B
Inflammatory Breast Cancer 2003
A/C Taxol dose dense regimen
6 weeks radiation
1 year Herceptin
NED for 2 years and 4 months
Recurrence in July 2006 with extensive liver mets over 70%, tumor obstructing bile duct-gallbladder, mets to spine and pelvis, abdominal lymph nodes enlarged, mass on pancreas.
Hospice called in until Gemzar and Herceptin started in Aug. 2006
May 2007 pet scan shows only 1 liver lesion 1.1 cm. bone mets gone, no enlarged lymph nodes.
June 2007-Switch to Tykerb/Xeloda because markers increased
Sept 2007-tumor marker 357-2.4 cm mass on pancreas,1 cm lesion on thyroid, duodenum and more liver mets.--switch to abraxane/carboplatin/herceptin and doing much better
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10-09-2007, 11:08 AM
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#24
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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What radiosensitizer drug?
Dear Vanessa -
Are you getting the drug from Allos that is supposed to make the radiation more effective?? I know your are already starting with the WBR today, but I was wondering if you have had a chance to look into the "radiosensitizer" options??
A little hunkering down in a safe environment with family was "just what the doctor ordered." We need a place to unwind and process the whirlwind that is a day of new diagnosis. You don't seem like the Pity Party type - just get down to biz and do what needs to be done. That is a good attitude to have when going on a new attack.
Goodbye mets!
__________________
"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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10-09-2007, 02:20 PM
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#25
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Think of you!
Hi Vanessa,
I was amazed by your upbeat post after all that you went through yesterday. It's very helpful that you have so much support from your family. You certainly do not need this bump in the road, but you sound as if you have the determination to get though it. As you know, many of us here have been down this road. I have not had WBR, but did have brain surgery three years ago for a three cm tumor, and later two times for radiation necrosis.
My thoughts will be with you during the next two weeks.
Best wishes,
Barbara
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10-09-2007, 02:23 PM
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#26
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Member
Join Date: Aug 2006
Location: Central NJ
Posts: 16
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Vanessa, I was so happy to see your smiling face again; sounds like the onc has a great plan, as well as your family. I'll certainly keep you in my prayers during the WBR; you can do this!!
((hugs))
Julie
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10-09-2007, 02:29 PM
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#27
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Vanessa, I just posted on the *other* thread...I'm so glad I found this one. I'm so sorry to hear you have to deal with this. It sounds like you have a great onc that stays on top of things and is quick to respond...that's a major plus...although I still wish things were different for you. But with an onc like that...I'm sure their plan will kick these mets into the twilight zone.
I am so glad you have such great family support during this time. Its so nice they are all there rallying around to help in anyway they can. That is so important. You hang in there. I will be keeping you in my thoughts and prayers.
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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10-09-2007, 02:33 PM
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#28
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Vanessa.
You are one amazing woman - and I know you will face this challenge with all the courage and determination there is to wipe those mets out.
Good luck with your treatment, I will be praying for you.
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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10-09-2007, 02:38 PM
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#29
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Vanessa,
I am keeping you in my prayers for each and everyday during your wbr
that all those small mets are going going gone!
Your blessed with family - you are deeply loved
Stay strong and please rest!
Hugs,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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10-09-2007, 02:46 PM
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#30
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Vanessa,
Not the news any of us were certainly hoping for, but you are in great hands. I am hoping and praying that the txs wil be succesful and you will be NED again very soon.
Hugs and Prayers,
Lexi
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10-09-2007, 03:16 PM
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#31
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Sorry to hear your update and I will keep you in my thoughts and prayers. Hoping all goes well and you are up and out quickly. Stay strong and confident.
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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10-09-2007, 05:05 PM
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#32
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Vanessa, Thank you for letting us know how you made out with the scans.
Sorry to hear the results. I will be saying extra prayers for you. Sounds like you have a good onc and strong family support. Now kick that cancer in the butt!!!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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10-09-2007, 05:06 PM
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#33
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Vanessa, Thank you for letting us know how you made out with the scans.
Sorry to hear the results. I will be saying extra prayers for you. Sounds like you have a good onc and strong family support. Now kick that cancer in the butt!!!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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10-09-2007, 06:01 PM
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#34
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Vanessa, thank you for the update. Yes, we were all thinking of you all day yesterday. Sorry this was not news you wanted to hear, but I'm so impressed that you are moving forward so decisively with nipping these nasties in the bud. Warm positive thoughts continue for you and your family
Much 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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10-09-2007, 07:09 PM
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#35
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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My heart is with you Vanessa. I watched for your update all day yesterday and I was heartbroken this morning when I read your update. I just didn't have it in me to respond then. Now those rads just need to zap those mets right out of there. You have to put on that soldier's uniform one more time to do battle.
I am thinking about you.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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10-09-2007, 07:49 PM
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#36
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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So sorry to hear
but you have a plan, and it is a good one. Tykerb/Xeloda combo is a good one and I just know that you will do well on it Vanessa.
Keep that smile on your face and your positive thinking. My prayers are with you.
__________________
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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10-09-2007, 07:59 PM
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#37
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Senior Member
Join Date: Oct 2005
Posts: 823
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AHHH Vanessa I am so sorry to read this news, you will remain in my prayers.
__________________
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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10-09-2007, 08:23 PM
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#38
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Hi Vanessa,
I'm so glad they are going to start right away, rather than letting you wait weeks. I hope the treatment works wonders. Way to go support team! Bev
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10-09-2007, 08:26 PM
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#39
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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So glad to hear that you and your docs are on top of this! Take care and let us know how you are doing... T/X is the wave of the future for many of us brain metsters. You will do great. Get that crud outta your noggin and keep it out!! LOL
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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10-09-2007, 09:48 PM
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#40
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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I was sorry to read your news...but the T/X combo has worked for many people on this board and coupled with the radiation should zap those nasty mets away. I will be thinking of you and hopefully your side effects will be minimal. Stay positive!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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