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02-23-2008, 05:10 PM
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#1
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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ALERT--THE LATEST FROM DR. OSBORNE--triple agent "cure"therapywclinicaltrials
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02-23-2008, 08:53 PM
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#2
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Senior Member
Join Date: Nov 2004
Posts: 190
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Thanks Lani !!!! In your opinion, what would be the best way to try to keep up with the triple threat trials? My onc only treats breast cancer. She participates in a lot of trials in her office. Is there some one she can write to to get the ball rolling(after they haved designed the trial ofcourse)
Kim
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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02-23-2008, 09:33 PM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 52
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Wow, I can't help but be a little down. I was treated with "just" AC/T and then Herceptin, 2 months after the trial data was released. I'm very happy for trials the new girls will be offered though.
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02-23-2008, 10:08 PM
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#4
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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as far as I know
one just looks up clinicaltrials.org and/or goes to meetings to hear which ones are being planned
How oncology groups/cancer centers get selected for trials (or start trials) is
something I know little about.
I know that when a cancer center receives the designation as a "comprehensive cancer center" (something which is coveted), they get an opportunity to participate in many more clinical trials.
I am certain others here can provide more input on this.
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02-24-2008, 06:48 AM
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#5
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Senior Member
Join Date: Nov 2004
Posts: 190
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Lani,
Again, thanks for your help!!! I'll keep my eyes open!
kim
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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02-24-2008, 08:00 AM
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#6
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Senior Member
Join Date: Jan 2008
Posts: 305
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I figured out how to get these slides to work -
They do not work in Firefox - but when I brought up internet explorer they work find.
This sounds very encouraging.
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02-24-2008, 01:45 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Yes, let's get cracking on the human version of my "favorite" trials
Lani, thanks for posting this. I saw this (pretty much exactly the same) presentation at San Antonio and of course have been following this since the mouse trials a few years ago. I was glad to hear him talking about opening human trials in 08.
When I hear him talk about the combination trials and say again and again "...and it never comes back" it makes me wish I could just go to the store and make my own salad of those things!
As Brenda would say...
Hurry.
__________________
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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02-24-2008, 02:52 PM
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#8
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Senior Member
Join Date: Nov 2004
Posts: 190
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I emailed Dr. Osborn to find out when the trials would be starting he replied "I would guess in about 6 mons. We are just now in the planning stage. Dr Osborne
Kent Osborne"
Chrisy,
I feel the same way you do. All of the drugs in the triple threat cocktail are available now. If I was Laura Bush I bet you I could get them.
Kim
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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02-24-2008, 07:26 PM
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#9
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Senior Member
Join Date: Mar 2007
Location: CHARLOTTE NC USA
Home town (ECUADOR) South America
Posts: 542
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OMG......mean all this "THE DOGS START BARKING ......and that mean that we getting closer to destination "cure" ................are we there yet .....
this "the dogs are barking is on the book: Don Quijote de la Mancha" de Cervantes ....
__________________
Lily Diag April/06 5 months after give birth my son Max stage IV mets on liver (5 tumors) 38 year old, her2+++ and ER+PR+ from32 nodes 4 positives mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery 5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression 03-05-08 start tykerb & xeloda
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02-24-2008, 08:36 PM
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#10
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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ahhh, Firefox is the problem! I will switch to Safari and see if I can access them.
__________________
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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02-24-2008, 09:49 PM
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#11
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Senior Member
Join Date: Apr 2006
Posts: 63
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"...and it never comes back."
__________________
Amy age 37 at dx
Feb 2008 Multifocal DCIS
Apr 2008 Bilateral Mastectomies
Sister to Laura age 37 at dx
April 2006
9 cm ER-/PR- Her2 +++/bone mets
neoadjuvant TCH plus Zometa
November 2006
bilateral mastectomy - Change to ER+/PR- Her2 +++
January 2007
innumerable tiny brain mets - WBR
March 2007
good response to WBR - some gone, all smaller
currently on Lapatinib and Xeloda
Feb 2008
Brain MRI: brain mets went from innumerable (jan '07) to 5 (june '07) to 3 (oct '07) to 1 that is getting less conspicuous(feb '08) PET/CT: Slight uptake in some sclerotic bone mets
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02-25-2008, 02:37 AM
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#12
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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That is based on the same talk I saw him give in San Antonio... and it thrills me to see it again!
Lani - a question that you might not know the answer to, but I had 2 years of Herceptin (and a total of 1 year in combo with Taxol), and I am coming up on a year of Tykerb/Xeloda. Is there anything to suggest that having had both Herceptin and Tykerb, but not together... at separate times, can contribute to turning off some of the referenced pathways and they potentially stayed closed off? Or do we need to be treated with the combos Dr. Osborne is talking about all at the same time?
__________________
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."
Last edited by hutchibk; 02-25-2008 at 02:39 AM..
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02-25-2008, 11:48 AM
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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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Thanks, this is what things have been leading up to for about 5 years.
This new triple agent therapy sounds QUITE expensive, but if the tumors "never come back" as in the mouse models then there is no need for future further treatment.
Would be worth it for so many of us.
After seeing this, I have one quarrel with Dr. Osborne. He states that there is 100% resistance developed to Herceptin. True for the majority, but what keeps those of us going on Herceptin for 5 to 10 years and more???
I still would like to see a study on those of us who have managed such long remissions on Herceptin alone.
__________________
"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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02-25-2008, 05:17 PM
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#14
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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This is a fascinating video even tho some of it is above my head. So, does this mean that the strategy of "saving" drugs for later treatment might be a fallacy?
TRS
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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02-26-2008, 06:42 PM
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#15
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Thanks, Lani. This sounds very exciting. I'm glad trials are starting soon.
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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