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06-09-2006, 08:55 AM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 285
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Dodged another bullet!
Friends,
Yesterday I visited with my onc to get my PET/CT fusion results. As he talked about my liver and bone mets and how they were stable, I was holding my breath waiting for him to let us hear about the lung mets. But he never said a word. So I anxiously asked..."and the lung."
"Oh, the scan was clear. There was nothing there." So calm. So nonchalent. While I was jumping up and down inside.
He then immediately began talking about Tykerb. Since he was at ASCO and heard the presentation, he believes I'm the perfect one of his patients to give it a try. His staff is already contacting GSK. As of now, I'll stay on Herceptin and Xeloda. Then when/if Tykerb becomes available, I'll drop Herceptin. (It feels like dropping an old friend.)
Life can truly turn on a dime.
Love and light to all of you,
Lisa
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06-09-2006, 09:03 AM
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#2
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Wow!
Lisa, I'm simply thrilled for you! What great news to hear first thing in the morning...better than a cup o' cappichino!
<3 Lolly
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06-09-2006, 09:20 AM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 26
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woooo-hooooo lisa ...thats good news to hear......GOD BLESS
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06-09-2006, 09:29 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Grand Rapids, MI
Posts: 1,516
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Awesome News...
I'm actually CRYING for you I'm so happy. Now you and Mel celebrate and have a GREAT weekend
Rhonda
__________________
Rhonda
Dx 2/1/05, Stage 1, 0 nodes, Grade 3, ER/PR-, HER2+ (3.16 Fish)
2/7/05, Partial Mastectomy
5/18/05 Finished 6 rounds of dose dense TEC (Taxotere, Epirubicin and Cytoxan)
8/1/05 Finished 33 rads
8/18/05 Started Herceptin, every 3 weeks for a year (last one 8/10/06)
2/1/13...8 year Cancerversary and I am "perfect" (at least where cancer is concerned;)
" And in the end, it's not the years in your life that count. It's the life in your years."- Abraham Lincoln
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06-09-2006, 09:35 AM
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#5
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Senior Member
Join Date: Sep 2005
Location: OH
Posts: 385
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Life is good...I'm happy for you. By the way, I love your current picture!
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06-09-2006, 10:12 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: British Columbia, Canada
Posts: 198
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Oh Lisa I am so happy for you!!!!! That must be a huge weight off your already loaded shoulders!!
Have an awesome weekend!
Tammy
__________________
Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured?
Recur: May'05 spine & Hip. New onc
treatment in Mexico Feb'06-Mar-06
back to Mexico June/July '06
Currently on herceptin/Zometa/Femara-recently added navelbine
Switched to arimidex Nov'06
ovaries removed June '07
ca15-3 in May'06 was 102
ca15-3 summer of '07 holding steady at 23!
ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36
Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans
May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin.
No signifcant changes.
Feb'09 Started Xeloda with herceptin..no more hormonals
Feb'09-June'09 tumor markers coming down again from 155 to 84
May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.
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06-09-2006, 10:12 AM
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#7
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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Lisa,
I am so happy for you!!!!
Hugs,
Karen
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06-09-2006, 10:54 AM
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#8
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Senior Member
Join Date: Sep 2005
Location: Central Valley, CA
Posts: 73
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Great news Lisa!
Helen
__________________
- Diagnosed May 2005 8 months after giving birth. Stage IV due to a single liver mets.
- Carbo/Taxotere/ Herceptin combo for 6 months
- Herceptin/ Navelbine
- Recurrence on the same liver spot in 7/07
- Liver resection 9/07
- Tykerb/xeloda 10/22/07
- NED since 9/07 and continued Tykerb/xeloda
- PET/CT in May 2009 show small spot in lungs. Continued Tykerb/xeloda
- PET/CT in Aug 2009 shows progression on lung nodules (slightly bigger)
- Onc considering Taxol/avastin
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06-09-2006, 11:00 AM
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#9
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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What DID they see ...
in the first scan that was so suspicious?? I would want to know to make sure that a false alarm doesn't happen again. Your stomach lining is already stressed enough, eh?
Super news that Tykerb was one of the first words out of your doc's mouth. I would not say you have failed on herceptin - just that you never get past a certain point against the mets. And Tykerb will protect your brain which is a biggie at this point.
Off to see my brain surgeon now.
__________________
"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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06-09-2006, 12:11 PM
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#10
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Senior Member
Join Date: Mar 2006
Posts: 306
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Lisa! Wonderful news on all fronts )
lots of hugs,
pattyz
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06-09-2006, 01:18 PM
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#11
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Lisa, this is such great news. Let's just hope that maybe Tykerb will be the drug that gets you to NED!!! I'm so happy to hear this news.
Best wishes,
Barbara H.
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06-09-2006, 03:16 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: .
Posts: 211
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Dear lisa
What great news - you must have been so excited.You Onc sounds great to be investigating Tykerb already.Have a great weekend and enjoy the relief.
love
lindaw
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06-09-2006, 03:27 PM
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#13
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Senior Member
Join Date: Jul 2005
Location: Ontario, Canada
Posts: 722
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good news stuff but..
I think that is fantasic. You know I love you Lisa Love and Light so I will play devil's advocate. From ASCO, weren't the really HUGE results from herceptin + tykerb? and... if herceptin has got you stable, why switch and use up a potential valuable resource you may need further down the road? Most experience with this has shown that dual modalities are expodentially more effective than singles. I believe this is also born-out in the trials.
Great news,
Al
__________________
Primary care-giver to and advocate for Linda, who passed away April 27, 2006.
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06-09-2006, 04:38 PM
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#14
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Senior Member
Join Date: Sep 2005
Posts: 285
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Thanks, Al. I'll go back and check out the Tykerb.
I hope you and Mel can connect some day. And I pray that this time without Linda is getting a bit easier as days progress.
Love and light,
Lisa
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06-09-2006, 05:30 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: Carlsbad, CA
Posts: 73
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fantastic news Lisa...definitely cause for celebration Enjoy! tami
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06-09-2006, 05:35 PM
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#16
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Senior Member
Join Date: Feb 2005
Location: LI, NY
Posts: 660
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How wonderful Lisa!!!!!! Keep kicking cancer butt...
__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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06-09-2006, 05:48 PM
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#17
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Senior Member
Join Date: May 2006
Location: Cleveland, Ohio
Posts: 65
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YYYYYYYYYYEEEEEEEEEEEEAAAAAAAAAAAAAAHHHHHHHHHHHHHH !!!!!!!!!!!!!!!!!!!!!!!!!!!
YYYYYYYYYYYYYYYIIIIIIIIIIIIIIIIIIPPPPPPPPPPPPPPPPP PPPPPPPPPPPPPPIIIIIIIIIIIIIIIIIIIIIIIEEEEEEEEEEEEE EEEEE!!
How wonderful!
__________________
Caregiver to mother, Diane
Diagnosed 3/2006 Stage IIB (T2, N2, M0), Her-2+++, Er/PR-, Grade 3
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06-09-2006, 07:49 PM
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#18
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Keep the the great dodging and weaving Lisa. I am so happy for you. Hopefully you can stay on Herceptin and take Tykerb as Herceptin deals with the outside of the cancer cells (extra cellular domain) and Tykerb takes care of the inside of the cells (intercellular domain) plus some Xeloda and pow - NED.
Kindest regards
Becky
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06-09-2006, 08:16 PM
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#19
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Senior Member
Join Date: Dec 2005
Location: Alexandria, VA
Posts: 1,055
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Yeah! Keep posting the good stuff. I know it's not all good, but it really helps the rest of us that have some doomed days. Best wishes BB.
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06-10-2006, 07:12 AM
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#20
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Senior Member
Join Date: May 2006
Location: northshore suburb of chicago
Posts: 1,093
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Thrilled for you Lisa, you deserve some good news. Congrats and good luck with the Tykerb when and if.
__________________
~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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