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01-19-2008, 12:01 PM
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#21
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Dear Chrisy,
I'm am ever so glad to hear that this trial will be starting at UCSF. We are lucky to have Dr. Rugo and many other brilliant cancer docs so close by. I have a very good feeling about this trial.
I must admit, that I too over indulged with food and wine over the holidays and my labs and blood pressure have not been good lately. But, I decided six years ago when I became stage IV that I wasn't going to deny myself those little splurges now and then. Now that the holidays (and 4 family birthdays) this month are past I'm getting back to my healthier routine. I just wouldn't have had nearly as much fun if I hadn't gotten to enjoy all those tasty holiday treats! Besides, chocolate is good for me!!!
Sending positive smart bomb vibes your way, Kim
__________________
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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01-19-2008, 02:31 PM
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#22
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Senior Member
Join Date: Nov 2007
Posts: 210
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chrisy.. congrats on the treatment... so far as i know, at least 3 women on this board are currently enrolled in the trastuzumab-dm1 trials. lily, marsha, and barb.. all are doing fabulous.. barb and marsha are doing once a week treatments and lily is every 3 weeks..
do you know which u will be. i have heard that genentech may start a second
phase 2 trial of the once a week dosing now that they have a good idea that they are able to infuse more drug into the body on the weekly regimen vs the every 3 week treatment. the every 3 week therapy dose is 3.6mg/kg. where as the weekly regimen is likely 2 - 2.4mg ..
keep us updated..
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01-19-2008, 02:31 PM
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#23
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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FLORI! Fo'Shizzle????????
I was worried about being "treatment neked" for 2-3 weeks (required for the trial) and wondering what I was going to do to keep those nasties under control until the smart bomb gits 'em.
Now I know, I will just read your post every day and laugh and laugh and laugh until I cry, releasing buckets and buckets of endorphins and other healing good things into my bloodstream!
I think maybe I'll get a t-shirt made with that on it and wear it to my treatment!
Flori, you rock! Thank you so much for always brightening my day!!!!!!!
Flori - you are most definitely still you. I'll be breathing only in between holding my breath for good test results for YOU.
Much love
Chris
__________________
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
Last edited by chrisy; 01-19-2008 at 02:36 PM..
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01-19-2008, 02:33 PM
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#24
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Runtolive
I will be on the 3 week schedule - although it looks like I will be having weekly labs done!
__________________
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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01-19-2008, 02:38 PM
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#25
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Senior Member
Join Date: Nov 2007
Posts: 210
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please keep us all posted ... genentech is enrolling 100 patients in the every 3 week trial. i have heard they are past the half mark.. have u heard anything to that effect. this trial is so important for all of us.. if this trial completes its enrollment soon, genentech would be able to start a pivotal phase 3 trial by hopefully the end of the year.. and maybe be approved by late 2009 or 2010
run to live
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01-19-2008, 02:40 PM
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#26
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Senior Member
Join Date: Nov 2007
Posts: 210
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i would not worry about that. the TDM1 will kick that cancer out of you but good..
i just know u can fight it...
run to live
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01-19-2008, 04:20 PM
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#27
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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I remember reading somewhere that 'visualization' is good for us fighters. I vividly recall the pictures drawn by a survivor who happened to be an artist of comic
books. They were printed in the "Cure" magazine last year. I think we need to do the exercise every day - visualizing how cancer cells got destroyed by the cocktails. Medical research has concluded that the stimulation of endorphin will boost our immune system. So, yes, let's "blast the crap out of those nasty cancer cells!"
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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01-19-2008, 11:35 PM
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#28
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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runtolive
I was told that there were 19 people already enrolled - but that does seem low to me! The total will be 100, 5 to be at UCSF (finally opening on the West coast!)
__________________
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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01-19-2008, 11:43 PM
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#29
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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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Hi Chrisy we need to encourage more people to this trial ....maybe phase 3 enroll with less cocktail history ..that way some of our sister can enroll and get some "extra use from herceptin" and you need to open a new post with it I'm sure all the good news that you are going to get soon you can write on clinical trials like Barbara H ,and Marsha who share with me ,my post .......
__________________
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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01-20-2008, 12:24 PM
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#30
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Hi Chrisy,
I would wait for liver ablation. I have a positive feeling that this drug will bring you to NED. It has been a miracle drug for me.
Good luck,
Barbara H.
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01-22-2008, 10:51 AM
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#31
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Member
Join Date: Jan 2008
Posts: 23
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chrisy, glad to hear about an exciting new treatment. I am still on The Tykerb/avastin trial...so far so good.I know that can change at any time so good to hear about this new trial!
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01-23-2008, 04:09 PM
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#32
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Senior Member
Join Date: Nov 2007
Posts: 210
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chrisy... trastuzumab-dm1 trial
chrisy. what the verdict.. are u starting the tras-dm1 trial.. hope so..
runtolive.
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01-23-2008, 05:08 PM
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#33
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Great news Chrisy
that you are able to participate in the DMI trial. I am desperate to get on it since my oncs office is offering it but since I have taken more then 3 chemos I am excluded. They are actually having trouble recruting because most of the women seem to be in the same boat as I am.
Hopefully they will push it through quickly.
Good luck and I am sure you will do great. Keep us posted please.
__________________
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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01-23-2008, 06:41 PM
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#34
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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As of the moment, the screening tests (yes, MORE PET/CT, X-ray and ECHO's) are scheduled for next week in hopes that I can start in the trial the following week. They are still waiting for the final contracts to be approved opening the trial at UCSF - this is supposed to happen by next week. Sure hope so as I'm eager (putting it mildly) to get this going I hate being untreated. Guess I'm just high maintenance.
Irene - yes I saw the Phase II trial only allows 3 prior chemos...the Phase I had responders who had up to 7. Hoping that somehow a door will open for you on this - I think this is going to be a great drug.
__________________
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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01-23-2008, 06:45 PM
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#35
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Senior Member
Join Date: Sep 2006
Location: Houston, Texas
Posts: 624
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So glad you are able to participate in this smart bomb trial. I wish you the best and will continue to think about you and pray for you daily. GOOD LUCK!!!!!!
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01-23-2008, 06:58 PM
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#36
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Please keep us posted on how the smart bomb is working for you. I hope you are NED very soon!
__________________
Barb
10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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01-25-2008, 07:29 AM
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#37
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Senior Member
Join Date: Nov 2007
Posts: 210
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irene the phase 1 trial does not have those limitations.. contact one of the phase 1 sites asap..
nashville, boston,tx, ucsf, and one more. escapes me..
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01-25-2008, 07:46 AM
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#38
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Senior Member
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
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Chris,
Wishing you the VERY best. You and Flori always brighten my day in your posts. Sending POWER vibes to you... Smart bombs away!
Terri
__________________
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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01-25-2008, 08:32 AM
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#39
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Smart Bomb
Chrissy,
Now that you have shipped Tiptoe and Tex on, I think it is time to start our own dictionary. You could be Mrs. Webster. Start with words like scanxiety and smartbomb. I hope the beauty of Santa Cruz and the spirit of adventure keep you on the track to good health. The army is behind you.
Hugs, 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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01-27-2008, 03:50 PM
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#40
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Senior Member
Join Date: Nov 2005
Posts: 943
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Awesome trail to take part in! Sending prayers that it will work for you.
__________________
Robin
2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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