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06-10-2008, 11:05 AM
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#1
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Finallllllyyyyyy - Yipeeeeeee
Well my friends - I finally received answer from Genetech on the Herceptin/DM1 trial -
I'M IN.......
Talk about being stressed...we are scheduled to leave for vacation tomorrow and we have been back and forth now for seems like an eternity of waiting.
Since I am now down to the bottom of the barrel, so to speak, of what to take next, this comes as a God send.
I take my first dose tomorrow morning and then we leave for vacation - but I am so pleased that they accepted me. Can you believe that out of about 12 tumors sites now - we HAD to find one 2 cm or larger.
Who would believe that we were praying for one to be bigger.. go figure.
I have been having back pain now for about 3 weeks and my onc feels it might be due to the spine mets??
They have called in some Vicadin to see if that helps.
Just wanted to share this with everyone and pray I get response from this trial.
Hope everyone is doing well.
__________________
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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06-10-2008, 11:40 AM
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#2
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Senior Member
Join Date: Nov 2007
Posts: 210
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congrats.. good luck in the trial
run to live
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06-10-2008, 11:44 AM
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#3
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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YIPEEEEEE is right!!!! That is great news
Irene. Thanks for letting us know.
You are such a warrior - getting a treatment and then leaving on your
vacation! I'm more of a couch potatoe type.
Enjoy your holiday and please let us know how you're doing on
this new combo.
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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06-10-2008, 11:52 AM
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#4
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Great news!
Irene I'm really pleased for you and hope you do really well on this. Pink Girl is right...tx and then leave for a holiday????? Wow whad a woman!!!!!
Have a lovely time and hope you come back relaxed happy and de stressed 
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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06-10-2008, 12:14 PM
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#5
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Senior Member
Join Date: Nov 2007
Posts: 210
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irene .. which tras-dm1 are you going to be in. there will be at least 2-3 different trials running..
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06-10-2008, 12:56 PM
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#6
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Yay! Hurray!
Dear Irene,
praying that this is finally the magic bullet you have been waiting for! Good luck and enjoy your vacation!
Donna
__________________
Donna in the Sierra Foothills of California
Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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06-10-2008, 12:59 PM
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#7
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Just wonderful, Irene. Now you can enjoy your vacation knowing that you have just received the herceptin smart bomb. Good for you.
__________________
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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06-10-2008, 02:13 PM
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#8
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Senior Member
Join Date: Oct 2005
Location: TAMPA, FL
Posts: 568
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Thanks everyone
Run to live - I am not sure which trial. It is given every third week with blood tested weekly.
I know I tried earlier in the year to qualify and I was told I had taken too many drugs and also had had a stem cell transplant - but they have since waived these exclusions.
My trial co-ordinator really had to work hard getting me in this time - but she did it.
I know there is another trial (same name) opening up in July with a little more leeway on it. I was going to try for that one when it opened if I could not qualify for this one. So there are more to come.
Thanks again.
__________________
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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06-10-2008, 02:32 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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Irene my friend you will love this drug is easy ...enjoy your vacations !!!! 2 types of vacations (#1) heavy drug vacation and (#2) your vacations ...
__________________
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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06-10-2008, 03:11 PM
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#10
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Senior Member
Join Date: Sep 2005
Posts: 556
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Irene,
It is such a good news! now you can relax and let the drug do its work. Wishing this will keep you NED for a very, very long time.
Julie
__________________
Diagnosed in Sept 2004 while pregnant with the second child. Stage 3b, tumor 4.5cm, 4 auxillary and supraclav node positive. Her2+++ FISH 9.4 and er-,pr-.
Had dose dense neoadjuvant AC,Taxol then mastectomy,radiation+xeloda+Herceptin.
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06-10-2008, 03:18 PM
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#11
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Senior Member
Join Date: Sep 2006
Location: Marengo, IL
Posts: 518
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Irene,
Congrats! Sorry it got down to the wire for you but you are in!!!! Please know many will be praying this will be the answer you need.
I hope the treatment goes well and you will enjoy a wonderful vacation. God Bless you!
Donna
__________________
Donna
Crystal Lake, IL
Diagnosed 8/4/06 at age 54
Lumpectomy 8/30/06
Stage llA, grade 3, ER/PR-, Her2++
1.7 cm tumor, 1+ lymph node out of 9
Completed 4 A/C, & 4 Taxol with Herceptin
36 rads completed 5/16/07
Mammograms, 7/07 clear
fractured ribs in radiated area 10/07
Finished Herceptin 12/27/07
Mammogram,CT,tumor markers 1/08 - small lung nodules in radiated area, repeated tests 3/08 stable
Mammogram,CT ,tumor markers 6/08 stable
NED 2 years!!
3 years !!!
4years!!!!
4 years, 10 months and 8 day NED, calling it 5 years!!!
Official 5 years 8/30/2011
8/31/ 2012 - 6 years!!!!!!
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06-10-2008, 03:20 PM
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#12
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Irene -
Just the news I was waiting for.
Now you can get that first dose, and hopefully your vacation does not include too much activity so you can kick back if you need to. (Some of the ladies have reported not feeling so hot after the first dose.)
Wishing you good trial results and a happy vacation. Now give those mets a good licking!
__________________
"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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06-10-2008, 03:48 PM
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#13
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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Great!!!!!!!!!!!!!!!!!!!!!
HI Irene,
I screamed when I heard this news. I am so excited for you because I was really worried you might not be accepted. This treatment has a very good response rate. You probably won't fill great with your first infusion, but it is doable. If you are in pain you will know if you are responding. I was in pain for three months, and pain free within two days of my first dose.
Irene, I so hope that this will work for you. With all the drugs you have already had, you won't believe the quality of life you will have on this drug. The hardest part is having to come in every week. At least you only have to be treated every three weeks,
Keep us posted. I am so excited for you.
Best wishes,
Barbara H.
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06-10-2008, 04:15 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Response before reading your post
Ok, Irene, Before I Even Read Your Post, I Am so glad You Are Saying Yippeeeee!!! Some Sweet Spirit Must've Opened A Window Somewhere.
Now I Gotta Go Back And Read Your Post, My Friend!
__________________
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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06-10-2008, 04:25 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Irene,
I am thrilled to hear your good news. Wishing you a grand vacation and the very best with your new
treatment.
Regards,
jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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06-10-2008, 04:28 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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yippee!
Irene, I just knew you would get in this trial somehow! I knew it!
You are in the same trial that I am - every 3 week treatments, weekly visits. The schedule is pretty demanding unless you live close to where the trial is - so I hope it is right in your backyard!
You probably know, the first infusion day is a real marathon. - 90 min infusion time plus observation, vitals and blood draws periodically for 4 hours after that. So bring a friend to bring you food! Also, I don't remember if your most recent treatment included Herceptin or not...if not, you may have a reaction of flu-like symptoms. Plan on vegging! As you continue on the drug, you will feel very good - just like on regular Herceptin.
I remember when you had to fight to get on the Tykerb/Xeloda trial and then jetted off to Italy on vacation. That worked out very well - so you may be onto something with the instant vacation.
One final comment, when I started this trial I asked about why would this work where Herceptin or Tykerb has failed? She told me "because it's different - you are not counting on the Herceptin to kill the cancer (which may have found ways to escape), you are using it to deliver the toxin which kills the cancer. It's like a smart bomb". Irene, you've had such good response to Her2 target therapies, I think this will be another success story for you.
Much 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
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06-10-2008, 04:34 PM
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#17
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Senior Member
Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
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Irene, That is the best news I have heard this week. (having a bad one) You have lifted my spirits. Best of luck and enjoy your vacation!
__________________
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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06-10-2008, 04:37 PM
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#18
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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So pleased for you!!!! And I'll be believin' and prayin' all the while that it gets to work quickly! 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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06-10-2008, 05:37 PM
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#19
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Great news! Hope this does the trick.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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06-10-2008, 05:37 PM
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#20
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Senior Member
Join Date: Oct 2006
Location: Louisville KY
Naples FL
Posts: 665
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Congratulations, this is such good news and have a wonderful trip.
patb
__________________
patb
Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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