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01-10-2008, 04:58 PM
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#1
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Senior Member
Join Date: Dec 2006
Location: Massillon, Ohio
Posts: 247
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I got to take my port home.
I think my surgeon was surprised when I asked him before surgery today if I could have my port to take home. I have been explaining to people for a year and a 1/2 what my port was like. Now I can show them. I am so glad pathology said I could keep it. I am a little sore and still light headed but they game me lots of anti-nausea meds this morning. Its out, lets hope I don't need it back.
__________________
Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009
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01-10-2008, 05:17 PM
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#2
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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Congratulations on this step back in to normal life!!!!!!!!
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01-10-2008, 05:40 PM
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#3
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Laurie
Congratulations on your new found port freedom...I think its great that you get to keep it....what a conversation piece!!!!!Get it molded in a hunk of acrylic.....accessorize with the darn think...it is a piece of art for what they cost!
__________________
"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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01-10-2008, 05:41 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Congratulations! Next!!! What fun thing will you do now? Have a great celebration. ma
__________________
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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01-10-2008, 05:41 PM
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#5
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Senior Member
Join Date: Sep 2005
Location: Ohio
Posts: 212
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Hi Laurie,
Congrats on getting your port out AND on getting to keep it! I had mine out a few months ago (finally, after 5 years) and wanted to keep it, too, but they told me "NO". Oh well. I'm happy it's out and I'm sure you feel the same way.
__________________
Audrey
diagnosed July 2001, at age 36
large tumor, 11+ nodes
Stage IIIb, er/pr-, Her2+
treated with A/C, weekly Taxol
radiation, + year of Herceptin
on clinical trial. double mastectomy
followed by reconstruction
NED!!
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01-10-2008, 06:06 PM
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#6
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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I'm happy for you Laurie. One step closer to normalcy. That is such a good feeling.
Sending gentle hugs tonight. Sweet dreams.
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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01-10-2008, 06:10 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Congrats Laurie!
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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01-10-2008, 06:15 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Yay!! Great news Laurie. Definitely on the road to getting back to normal!
Lexi
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01-10-2008, 07:34 PM
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#9
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Laurie,
When I got my first port taken out I too asked for it and got it. My family members kept asking about it the entire time I had it in and I was then able to show it to them. It sure opened their eyes!
__________________
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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01-10-2008, 08:10 PM
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#10
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Congratulations, Laurie! It's always good to hear stories like yours. Now go celebrate the best way you can! Love, Bill
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01-10-2008, 08:40 PM
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#11
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Congrats Laurie - What a great idea! My last Herceptin is scheduled for May 8th, I guess my onc. will want me to wait about 6 months to take it out. I will ask if I can take it home too - sort of like a trophy!
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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01-10-2008, 10:06 PM
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#12
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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LAURIE -- DO YOU HAVE A CURIO CABINET??? FOR DISPLAY PURPOSES. DRAPE IT ON A PICTURE EASEL. LOL.
KATE -- ARE YOU THE ONE IN THE RED SUIT? I SURE CAN SEE YOUR HAIR IS COMING BACK...
Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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01-11-2008, 09:43 AM
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#13
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Senior Member
Join Date: Aug 2006
Location: Rowlett, TX
Posts: 138
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Wish I had thought to ask for mine too. Good for you (*grin*). (p.s. I DID ask to see what they removed when I had my hysterectomy in 1983. My dr thought I was wierd, but brought it up in a bucket of formaldehyde to my hospital room after pathology was through with it (*chuckle*)).
__________________
Janet in Rowlett Texas
Dx July 2006 IDC 1.8cm, ER-/PR- HER2+ (FISH 7), KI67 High (60%) grade 3, TOPO II neg
Aug2006: lumpectomy, SNB (4 nodes neg), Stage 1
Jan 2007: Finished 6 cycles of TCH (Taxotere, Carboplatin, Her ceptin). Then Herceptin every 3 weeks.
Feb 2007: Completed Radiation
May 2007: Stopped Herceptin due to low LVEF (49%)
July 2007: LVEF now 44% -- starting Coreg
May 2008: Heart NORMAL! Yippee.
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01-11-2008, 02:10 PM
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#14
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Laurie, I wanted to take my port home too when it was removed and planned on asking for it. But every thing went wrong that day and I forgot to ask for it. I can understand why you wanted it...after all its a big part of our body's for so long. Like you...I HAD SO MANY people ask me how it worked and what it looked like. So I wanted it for those same reasons. I'm glad you got yours...now you can have "Show and Tell's" when needed.  Congratulations on getting it removed and moving on. Its a good feeling.
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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01-11-2008, 02:18 PM
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#15
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Senior Member
Join Date: Aug 2006
Location: Poland Ohio just a little south of Youngstown.
Posts: 473
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Laurie, what a great day for you, congratulations. I can vividly remember the day I had my placed now I'm anxious to get it out too. I've planned on asking for mine too. Onc wants to wait a month or two he tells me not to be so anxious, he's not the one with the "button" stickining out of his chest!
Hugs and congrats again.
__________________
Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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01-11-2008, 02:37 PM
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#16
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Laurie, Congratulations! You deserve to celebrate. I had my last herceptin this week and my onc wants me to keep my port in for another year. Oh well. Just glad to be done with treatments. I noticed you are from Massillon, Ohio I grew up in Canal Fulton, Ohio ( jsut down the road from you) Moved to North Carolina 23 years ago. Some of my husband's family still lives there. Small world. Best of luck to you!
__________________
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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01-11-2008, 06:31 PM
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#17
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Congratulations Laurie! It's fun having the port for "show and tell", but be sure and keep it in a ziplock baggie so people aren't acutally able to touch it, mine still had fluid in the resevoir when I took it home. They had put it in a special ziplock bag with orange and black marks and "Biohazard" written on it, which I was glad for. It was fun for awhile, but I eventually gave it back to my main oncology nurse, and she was happy to get it as she planned on using it for a demonstration for a class she was teaching.
<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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01-11-2008, 08:28 PM
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#18
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Wanna See??? No... Not Really....
Okay, I'm not reporting you -- this time! Biohazard... Not good. My surg asked me as he was removing my port in his office if I wanted to see. I was looking away and said, If I could wait in the waiting room, I would. I did not want to even look at it. HEY THIS IS REALLY COOL. COME ON. TAKE A PEAK. No thank you. Just get it out and let me go. Thank you for everything, but I could skip this part...
Now -- I would have liked to have seen. A chemo nurse had one semi recently and showed it to me. It wasn't MINE, so somehow I was fine. Interesting. I am on Port #2 (since '98). BARD PORTACATHETER. I like it. It likes me. We have a good relationship. No issues.
When I had my kidney stone that it took 10 wks of serious effort to pass on my own, at my insistence, refusing surgery, before lipto... I wanted to have it made into a ring or something. I was so proud! But, better to have it crushed and analyzed so they knew what was causing the larger than life thing that ripped my urethra to shreds and caused Hawaiin Punch to color my pee...
A port is a great invention and a super aid in accessing veins otherwise determined to remain undetected, collapsing, blowing out, rolling over and befuddling all nurses who were sure they had a good one. I love my port... The simplest things in life make me happy... Andi
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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