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11-17-2006, 01:42 PM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 285
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I May Have Made The Team!
After waiting since June for admittance to the Tykerb trial, yesterday I signed the acutal Consent Form. So now, even though I've had most scans within the last month, I must have a bone scan, brain scan, CT and echo within 2 weeks of starting the actual med. If all looks good, I will be stay on the Xeloda, put pulled off the Herceptin. I'll stay on the Zometa monthly for bones.
Turns out my onc is heading up the trial for whole state of Colorado. He may have known a bit more than he was letting on about time, but he didn't want me to jump ahead of the waiting game in case something changed. Yesterday, he told Mel and I that all of my torso pain in obviously the cancer progressing. So we must do all in our power to help the Tykerb work!
Love and light,
Lisa
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11-17-2006, 03:00 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Wow!!! This sounds excitiing. I hope that you receive this treatment soon.
Best wishes,
Barbara H.
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11-17-2006, 06:17 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Lisa,
Great news. Definitely seems so promising! I hope it is approved quickly and you will kick this cancer to the curb!
Hugs and Prayers,
lexi
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11-17-2006, 08:48 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Dear lisa
Thank god - I am so glad you are to start tykerb soon.
love
linda
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11-17-2006, 09:00 PM
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#5
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Senior Member
Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
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Lisa, I'm so happy for you.
__________________
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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11-17-2006, 09:14 PM
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#6
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Praying all works out, BB
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11-17-2006, 10:07 PM
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#7
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Dear Lisa, I'm SO glad to hear this! You and Mel are in my thoughts and prayers.
<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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11-18-2006, 07:56 AM
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#8
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Founder - HER2 Support Group
Join Date: Feb 2005
Location: Carlsbad, CA
Posts: 361
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Lisa,
Wonderful News !
My prayers are with you.
Hugs
Christine
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11-18-2006, 08:22 AM
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#9
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Lisa,
This is wonderful new.
Hugs and healing prayers.
Karen
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11-18-2006, 11:16 AM
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#10
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Senior Member
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
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Lisa, I am so excited to hear your news! Again you are an Amazon warrior in the forefront of the battle. We will all be praying for you and looking for your posts! Hugs, Tricia
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11-18-2006, 11:25 AM
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#11
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Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
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Congratulations and thank you for being a pioneer for all of us.
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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11-18-2006, 01:04 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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great news Lisa.
Hope it starts soon.
hugs and love
sarah
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11-18-2006, 02:34 PM
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#13
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Early Access??
Dear Lisa -
I am glad you have gotten that far, but I was thinking you would get Tykerb on Compassionate Use/Early Access. Thus I was puzzled by needing to repeat all the scans.
Am wondering why your med onc is making you wait for the trial since he says you have progression. Don't mean to raise doubts, just am wondering "what's wrong with this picture?" Especially since you have symptoms.
Anyway, carry on with all our best wishes and prayers behind you.
__________________
"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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11-18-2006, 03:58 PM
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#14
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Great news, all the best with this new attack on your cancer.
__________________
~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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11-18-2006, 04:39 PM
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#15
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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Good luck with the Tykerb. I will keep you in my thoughts and prayers!
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11-18-2006, 10:25 PM
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#16
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Senior Member
Join Date: Sep 2005
Posts: 285
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Reply to Steph
From what I understand, I'm actually the first patient (or close to it) for the trial in Colorado. The confusion I believe is the difference between the "Compassionate Care" group and the trial. I'm certainly no expert. I'm just a hopeful, grateful guniea pig.
Happy Thanksgiving!
Love and light,
Lisa
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11-19-2006, 11:55 AM
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#17
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Dear Lisa,
I'm really happy to hear your news about finally getting the Tykerb.
Take care and have a wonderful Thanksgiving with your family!
Love, Kim in CA
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.
5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.
9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .
11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!
7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!
June -Dec 2004 UW Vaccine Trial.
7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.
Brain MRI @3 months NED!
2006-2011 brain/body still NED
8/04/11 Taking Herceptin break, will monitor with tumor markers.
6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.
7/23/12 CA15-3 now 49.3
Her2 Serum 26.8
8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49
11/7/12 Add weekly Taxotere for 4 cycles
2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.
November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!
Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara
Jan 2016 Begin Kadcyla
March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla
November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
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