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09-06-2007, 04:47 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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Just back from my onc's
Just to update everyone.
Just as we suspected, I have progression and have developed a new tumor in the same general area as the other. So I started off in this Tykerb/Xeloda trial with two tumors in the lymph. system and in the year, one shrank and now the one left behind is a little smaller then when I began and has held stable and now a newer one has popped up.
It a bummer, but that's ok - we have another plan so tomorrow I will begin on Tykerb with Avastin. We are going to try this combo and see how I respond and to be sure I don't get a bad reaction to the Avastin. If it shows promise, I will stay on the combo and if not we will add a chemo to it, probably Taxotere.
I got a full year out of Tykerb/Xeloda and I think that was very good. Am sorry it did not last longer but that is the longest I have gone in a long time,
My onc has a new trial which he just started. Its a Herceptin base with a chemo combined right into it. He was very hopeful to put me on it but since I had a stem cell transplant, I was disqualified. I hope it proves to work and is approved quickly. He seems very excited about it. So there are more coming ladies.
WE are the pioneers for all of these new treatments coming out ladies and WE will lead the way for a much more treatable new world. This is only the beginning.
For those of you on Tykerb/Xeloda or other trials with Tykerb, just remember it is a great new drug which I think has much promise. So do not get discouraged by my news. I did great for a whole year and that I feel was wonderful.
I will find the right combo again......
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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09-06-2007, 05:06 PM
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#2
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Senior Member
Join Date: Aug 2007
Location: Detroit Metropolitan Area, Michigan
Posts: 592
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Irene from Tampa. Bless you---You have wonder positive thinking and attitude. You are an inspiration to me. I was diagnosed a year ago and had a good attitude for 11 months. I became depressed this past month due to my ongoing breast pain and fevers. How do you do it?
Best to you in your new treatment to eliminate that tumor and all and any remaining cancer cells. You are in my prayers.
__________________
Aug06...Dx Age 50, IDC Left Breast, 6+/16 lymph nodes, Stg 3, ER+/PR+/HER2+
Sep06-Jan07...Mediport. Chemo: AC x 4, T x 4
Dec06-Nov07...Herceptin
Feb12,2007...Surg MRM Left & SM Right, reconstruct w/expanders
Mar07-Jun07...Saline Exp
Jun07...Start Tamoxifen
Jun07-Aug07...Rad x 25
Jun07-Oct07...Persistent fevers-unknown origin
Jun07-Nov07...PT for Severe PMPS & Capsular Contracture
Nov07...Surg Capsulectomy, Gel Implants, PMPS pain gone instantly.
Feb08...NED 1st CANCERVERSARY!!!!!
Feb08...2 months post surgery Caps Cont again :(
Mar08...Stop Tamoxifen. Start Arimidex.
Apr08...Sudden high fever, Hosp ICU 10 days, staph infect, emerg surg, implants removed. Outpt IVantibiotics Daily x 6 weeks
Feb11...NED 5th CANCERVERSARY!!!!!
Feb12...NED 6th CANCERVERSARY!!!!!
Aug12...Spotting. Surg=D&C
Sep12...STAGE IV = RARE BC METS TO UTERUS ILC ER+/PR+/HER2-Negative) (Different BC than originally diagnosed = IDC ER+/PR+/HER2+).
Sep12...Stop Arimidex. Start Afinitor & Aromasin.
Jan13...MRI = no progression no reduction
Apr13...Progression. Stop Afinitor & Aromasin.
Apr13...Start Chemo: Taxol & Carboplatin.
Nov13...Scans & Pelvic 95+% Reduction. Nueropathy>Stop chemo start Fareston.
Jan14...PET scan = no progression stable.
May14...Pelvic > Bleeding & cramps. TMs up.
May14...PET scan = uterine progression :(
May14...Stop Fareston. Start Chemo: Xeloda.
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09-06-2007, 05:55 PM
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#3
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Oh pooh! But one thing's for sure, you are one helluva woman. I am happy you did so well on a 'gentler' combination - at least one year of no infusions. Tykerb and Avastin should be gentle too - especially since neither is chemotherapy. Now get a couple of decades on that and your hair will grow as long as Rapunzel's!!
You help me keep the faith.
Big hug to 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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09-06-2007, 06:08 PM
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#4
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Irene,
Sorry you have had progression, but glad to hear that you are being as positive as possible under the circumstances.
Hopefully the new drug combo will work its magic 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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09-06-2007, 06:10 PM
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#5
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Senior Member
Join Date: Jul 2007
Posts: 43
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ditto like becky, oh pooh!!! but you seem really positive and that makes me feel good thoughts for you. if avastin is not a chemo what is it. i know some of the girls here are on it. i have just been on taxol and herceptine. seems to keep my mets stable at this time. how long were you on your last chemo and DID it gave you one year of stableness? THAT IS GREAT . I WILL BE GLAD WHEN I CAN BE CHEMO FREE. I WILL KEEP YOU IN PRAYERS AND PRAY THE NEW MEDS WILL SKRINK THAT HORRIBLE TUMOR. TAKE CARE DORINDA
__________________
nov 2006 dx. with bc. 3 tumors removed from left breast lumpectomy done. her2 postive er+pr-. scans showed extensive spine mets(to many to count) ,3 tumors on left rib,one tumor on skull and 3 tumors on liver. stage IV from get go. dec.2006 started chemo taxol and herceptine wkly. zometa monthly. rescanned in march 2007, liver tumors shrinking a little. bones to early to tell but pain is gone in my back. rescanned in june 2007. liver mets gone, bone scan looking better but still alot in my spine. still on taxol and herceptine. zometa monthly. rescanned in august due to ca 2729 going up. liver still good , mets in ribs and skull gone but multiple areas still on lumbar and sacrum. mri of brain august 07 negative for mets.I AM BELIEVLING GOD FOR MY HEALING.
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09-06-2007, 06:19 PM
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#6
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Hi Irene
You have a very generous heart to be thinking of the others who are still on Tykerb/Xeloda. Good luck with your new combo. Keep the faith.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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09-06-2007, 06:25 PM
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#7
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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I too am hopeful about your new drug combination. You are an inspiration to us all and I am keeping you in my thoughts and prayers. I also hope you tolerate this new drug combination as well and I am with Becky, I hope you hair grows as long as Rapunzels. Best wishes.
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09-06-2007, 06:39 PM
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#8
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Irene
First of all thank you for being the brave and encouraging woman you are...it helps all of us struggling with this disease, those newly diagnosed, those waiting for the ball to drop and their current treatment to quit working. You give us hope!
I think you will find the Avastin very easy on you...I went today and will restart in 2 weeks. I was diassappointed that I will be staying on Taxol longer, but whatever it takes. My counts have reamined good throughout this, I havent had to take anything. I did ask to be switched to the every other week Taxol instead of weekly...just as a time saving effort. It took almost 3 hours to get to Chicago today...left at 5am, returned at 4:30pm....a 12 hour day for treatment, and most of it is the drive. I could also do without the extra Decadron each month...so in 2 weeks I will get the 1,2,3, punch of Taxol, Avastin and Herceptin....biweekly
May your hair grow long enough to need braids Irene!!!!!!!!!!!!
__________________
"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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09-06-2007, 06:49 PM
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#9
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Irene,
I read your post the whole time thinking "what an awesome woman!!!" Truly you are. Such an encouraging, positive spirit you have. I truly pray this new combo is this ticket for you.
God Bless you friend and thanks for lifting us up.
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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09-06-2007, 06:57 PM
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#10
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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I agree with everyone, you are an awesome woman with such positive attitude. It needs to rub off on me. Wishing you best of luck with a new treatment plan to blast those cancer cells to kingdon come! Will keep you in my prayers.
__________________
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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09-06-2007, 07:07 PM
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#11
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Irene,
You are just amazing! Full of courage and a beautiful positive attitude.
As they say, "When the going gets tough, the tough get going"
Wishing you all the best with your new treatment.
Regards,
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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09-06-2007, 07:48 PM
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#12
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Best of luck Irene. Hope the new combo shrivels that little devil. Thanks for keeping us posted. Bev
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09-06-2007, 07:58 PM
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#13
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Hi Irene,
Sending my good wishes too. Keep on thinking and acting positive like you do. You are one of the leaders in this pack.
Is it hot enuf for you in Tampa?
Hugs from Oregon, Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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09-06-2007, 08:06 PM
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#14
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Senior Member
Join Date: Oct 2005
Location: Boise, Idaho
Posts: 758
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Irene, I am so sorry to hear this, however, your bright spirit shines through. You are a true inspiration to all of us. I know that the right thing will happen for you. I have never responded directly to one of your posts but I have often thought about telling you that my husband is retired Air Force. We were stationed at Mac Dill from June, 1964 to September, 1965. We lived close to Gandy Bridge and that is where I learned to love fishing.
I worked in the Operating Room at Tampa General. I doubt if any of my co-workers are still there as I was young then and am retired now.
Anyway, love and hugs and many prayers,
Marlys
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09-06-2007, 08:57 PM
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#15
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Hi Irene,
Well, I'm sorry it continues to pop up again that is for sure. At the same time I am ever so hopeful that the all the genetic chunks of the alphabet that researchers keep finding everywhere will move faster toward turning into better solutions sooner and sooner. Thanks for sharing what you are learning, Irene.
Much love,
AlaskaAngel
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09-06-2007, 09:22 PM
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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,
Well, you had a good run with theTykerb/Xeloda. I'm sorry that it didn't last longer. You are a real warrior and give us all inspiration. I'm praying that the new combination will be the magic bullet.
__________________
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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09-06-2007, 10:59 PM
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#17
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Senior Member
Join Date: Feb 2006
Location: South Florida
Posts: 131
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Irene
Sending you hugs and wishes of new treatment success.
Avastin is a good one, I took it w herceptin for 6 months and it worked on my liver as well as my primary tumor.
Best of Luck to you!
__________________
Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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09-06-2007, 11:10 PM
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#18
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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I Just want to say...
Irene, I love your attitude! Thanks for the smileyou gave me at your common sense approach to all of this! On to the next thing, thanks for the last one!
Good luck to you!
Donna
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09-07-2007, 02:43 AM
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#19
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Hi Irene!
Your courage and caring just ooze off the page! I wish you didn't have a reason to be such a wonderful warrior, but am grateful to be able to share in your journey and grow from your strength and courage. I'll be praying for smooth sailing and tons of positive results. Please let us know soon how things are going. Mary Anne
__________________
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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09-07-2007, 08:17 AM
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#20
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Thank You So Much Ladies
It is so good to hear and feel so much support from everyone....
I will begin my first Avastin treatment today (along with my usual dose of Tykerb)
Sheila - My onc did tell me that the Avastin seems to "connect" better when given along with a chemo like Taxol, etc. I hope I am making the right decision to bypass that for now. We have Taxotere just in case. The last time I took Taxol along with Herceptin and Carboplatin it did nothing for me. We will give this a try for a few treatments and see what happens.
It is very hot here in Tampa Catherine. I am a summer person having grown up in Tampa, but even I am looking forward to a break. We are awaiting to see how our hurricane season fares this year. So far so good. They said it was going to be worse but not so far for us anyway.
I am getting ready for the Susan G. Komen 3-day walk now in Oct and am hopeful it will be a dry one since we have to camp out for the 3 days in tents. It is a awesome experience so worth every minute of it.
I know MacDill Air Force base very well Marlys. Have been there many times at about the time your husband was there. My ex-husband was in the Army so we could shop on base at that time.
Yes Becky - I could only wish that my hair could get as long as Rapunzel's but can only hope to hang on to what I have - lol It is growing and I keep it short and spiky (attitude hair-do) but I like it. It's very thin on the top so get worried if I have to lose it again and it not come back at all.
Oh well, if that is the worse I can deal with it.
Ladies you all have a wonderful day. Today is my day off from work and I am going to go out to the garden and enjoy my flowers for a bit before I have to go sit in that chemo chair for hours.
Talk to everyone again soon.
__________________
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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