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Old 05-31-2008, 06:59 PM   #1
Joy
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now I am being neurotic

really I am always neurotic. Does anyone know why herceptin dm1 works for some and not others? I am starting to freak out about this not working as well as going so long without treatment. I sdon't know what brought on my case of the worries, but that is where I am. Any thoughts on the patterns of responders? thank you all.
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dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-31-2008, 07:08 PM   #2
Joe
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Joy,
Genentech may be releasing data at this weeks ASCO meeting.

We will post if we receive any news.

Regards
Joe
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Old 05-31-2008, 08:27 PM   #3
Barbara H.
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Thinking of you

Hi Joy,
Try to stay positive even though it is difficult when you are waiting. Although not everyone responds to a drug, this trial has had some good results, and is likely to work for you.
Thinking of you,
Barbara H.
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Old 05-31-2008, 09:14 PM   #4
Bill
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Hey Little Sis, please don't worry too much. I'm sorry, but I can't help very much with the details of the efficacy of certain treatments, but please know that I will always be here for you, providing prayers and support. Love ya, Bill
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Old 05-31-2008, 10:20 PM   #5
BonnieR
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Joy, stop being so hard on yourself. It is not neurotic to be worried about real things. I hope you get the answers you need to relieve your mind.
Keep the faith.
Bonnie
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 06-01-2008, 07:46 AM   #6
Mary Anne in TX
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Joy, waiting is the pits! Dream up some terrific results for yourself for the next few weeks until you get the "real" good results!! Hoping it works it's magic and that you don't even know you're taking it!
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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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Old 06-01-2008, 10:00 AM   #7
IRENE FROM TAMPA
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Smile Hi Joy

No you are not being neurotic, if you are, we ALL are.

I am going through the same thing at present. I am still waiting on answer to see if I will be accepted on the DM1 trial. I was previously denied but my onc office is trying AGAIN in desperation to get me on this trial. We hope we will hear something on Monday since I NEED to start some type of treatment by this week. I have had major progression since my last two different combos failed on me.

I AM ALSO GETTING NEUROTIC so don't feel out of place.

I wish you much luck my friend and just hang in there since that is all that we can do. My prayers for you.
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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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Old 06-02-2008, 10:06 AM   #8
Joy
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And back to you Irene

I am anxiously awaiting to hear what happens and I want something to happen for you SOON! Please let us know as soon as you can. I hope you are hanging in there okay. You are an amazing woman.
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with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 06-02-2008, 12:18 PM   #9
chrisy
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Anxiously awaiting myself, too!

Joy, first of all you are not neurotic, just trying to deal with all the uncertainty. Not too much fun, is it?

The same is true of ALL treatments, too little is known about who will respond and who doesn't....but it's compounded in this case because there is so little data it's hard to even guess!

Meanwhile, I'm hoping for miracles of intervention myself...I was denied for treatment again, that dumb AST still too high (although still not as high as it's been and barely over the study "limit"). Still, this time it may mean I'm DQ-d from the trial. Which would really be a bummer because it DOES seem to be working for me.

My doctor is going to talk to the medical monitor of the trial, hopefully they can find me a loophole while I try and figure out how to get those darn LFT's down. Of course, she's at ASCO this week, so that makes it harder!

Joy, you responded for a long time on Herceptin, I think that's a good sign.

Irene, keeping my fingers crossed for you too. Maybe all our hopeful vibes will help the universe find doors for us, or at least a window we can sneak through.

Much love
Chris
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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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Old 06-02-2008, 12:58 PM   #10
runtolive
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joy. initial studies with tras-dm1 showed an approx 80% response rate , of the first 15 patients in phase 1 dosed every 3 weeks. 7 of 15 patients showed stable disease. 5 of 15 had a PR or tumor reduction.. only 3 patients of 15 failed to respond at all.. try to relax, I hope and pray it works for you..

Chrissy.. sorry to hear about the LFT's .. a phase 2 weekly dosed trial is starting in july... maybe u need a lower dose of tras-dm1 but more frequent dosings..

run to live
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