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Old 03-08-2008, 09:27 AM   #1
eric
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Starting a new clinical trial

Hi All,

Well Caryn's scans came back confirming growth (40% increase) after only 3 weeks on and one week off of the low dose adriamyacin. We met with Hudis at Sloan and Caryn is going into one of the HSP90 heat shock protein trials. Protocol requires that she be off treatment for 3 weeks so she should be starting in 2-3 weeks. This makes me nervous due to the recent growth and agressive nature of these cells but there doesnt seem to be anything we can do about that. The Dr's minimize that but it does concern me since it can potentially effect options down the road (cyberknife,etc). Our NJ doc said we'll keep a close eye and if the HSP doesn't seem to be working early then he will quickly consider targeted radiation although he prefers a systematic approach at this point and believes we will still have this option down the road. I hope he's right but more importantly, I hope we won't even need it!! Bring on NED. Some interesting insight from Hudis for anyone considering an HSP trial. He is very high on 17AAG although she's not eligible. She's going on a new drug from a different company called CNF2024. It's in pill form but she will have to travel into NY 4 days the first week, and less each week after. I'll keep you informed.

Love to all,
Eric
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Old 03-08-2008, 12:06 PM   #2
Barbara H.
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Hi Eric,
This trial sounds exciting and I hope it works for Caryn. Thank you for keeping us informed.
Best regards,
Barbara H.
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Old 03-08-2008, 02:21 PM   #3
Lolly
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Eric, it's alwasy nerve-wracking waiting to start new treatments; I will keep you both in my thoughts as you wait for Caryn to start the trial drug.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 03-08-2008, 03:50 PM   #4
lilyecuadorian
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I wish you the best results Carin and Eric ...love Lily
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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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Old 03-08-2008, 06:57 PM   #5
eric
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Thanks guys. I'm nervous about Caryn's situation but optomistic about this treatment. I pray that it works great for her and becomes an exciting new options for everyone else.

Love,
Eric
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Old 03-08-2008, 07:08 PM   #6
kareneg
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Wink

I also pray that this new treatment works for Caryn. You are both in my thoughts and prayers. All my best my two friends and may this new plan of attack kick butt!
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Love and Hope
Karen

IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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Old 03-09-2008, 09:48 AM   #7
Joy
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best, best, best to you both

Wow, that was a lot of info in a such a short post-thank you. I'm excited for this trial and, yet, appreciate the nerves. Please keep us posted like you are always so good at doing and we are sending pioneer success energy your way.
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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 03-09-2008, 01:55 PM   #8
Julie2
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Eric,

All the best with the new treatment. Caryn is in my thoughts.

Julie
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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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Old 03-09-2008, 04:18 PM   #9
Mary Anne in TX
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Eric, you and Caryn will be in my prayers for each day to get shorter & easier as you approach the day you begin this exciting new trial! why not pick something special to do each day that blesses you both as you wait for that special day to arrive! I'm believin' great things for your outcome! ma
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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 03-09-2008, 06:04 PM   #10
eric
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Mary Ann, what a nice idea...I'll make sure we do that. Thank you
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Old 03-09-2008, 09:51 PM   #11
Bill
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Eric and Caryn, you are both in my thoughts and prayers. Ma, that is a great idea! Love and Peace to you all, Bill
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Old 03-11-2008, 05:36 PM   #12
eric
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Surprise, surprise...T-Dm1!

Turns out that there is room in the weekly study so Caryn will be taking in part in this trial instead of the HSP90. I'm happy about this since this is a proven drug even though it's a phase 1. Hope it turns out to be great and I will give credit to all of your prayers and wishes!!!!

Lots of love, Eric
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Old 03-11-2008, 07:47 PM   #13
Kim in DC
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that sounds great!!!! When you get a chance let us know more about the trial. I see already that it is weekly. Is it a different dose?


Kim
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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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Old 03-12-2008, 05:45 AM   #14
eric
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Within this trial, they have 8 different doses they can give on the 3 week side and there's 3 different doses on the weekly side.
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Old 03-12-2008, 06:14 PM   #15
Bill
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That's great news, Eric! You and Caryn keep fighting the good fight and stay strong. Love and prayers for you both, Bill
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Old 03-28-2008, 09:54 AM   #16
kareneg
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Wink Hi

Hi Eric,

I am just checking in on you and Caryn. How are things going ,did you start the trial yet? I hope you have please know I think of you both all the time and pray Caryn does wonderful on this new trial. All my best.
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Love and Hope
Karen

IDC
DX 1998 STAGE I ER+/ PR+
AC CHEMO TILL FEB 1999
Tamxofin till 2001
2001 exstensive liver mets and mets to lungs
Started weekly taxol
Jan 2002 found out I was strongly HER2POS+++ started herceptin continued with taxol and herceptin till June 2002 then from June 2002 till Jan 2005 just herceptin and Arimidex
2005 Navelbine herceptin had RFA Then back on taxol with herceptin
April 2006 progression again went on clinical trial with tykrerb/herceptin progressed on the started Xeloda/ herceptin
Feb 2007 started Doxil
August 2007 Taxotere,Carboplatin and Herceptin exstensive mets to liver and pancreas
October 2007 Had to stop Carboplatin due to sever allergic reaction
Jan 2008
Stopped Taxotere due to progression now on Gemzar and Herceptin
March 2008 Starting Carboplatin, Abraxane, and Herceptin.
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Old 03-28-2008, 11:48 AM   #17
tousled1
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Eric,

Great news! Now she can join the others on the board here who are on the TDM1 trial and having good results. Please keep us posted. You're both in my prayers.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 03-28-2008, 02:02 PM   #18
runtolive
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eric .. are you sure about that.. the weekly trial is a dose escalation trial.. i think they are dosing at 2.4mg/kg in the weekly trial, and 3.6mg/kg every 3 weeks..
other than having to be infused every week, that weekly trial is the way to go. u get almost twice as much drug infused vs the every 3 week dose.

can you double check and get back to us..

run to live..
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Old 03-28-2008, 07:48 PM   #19
eric
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runtolive - I will double check and let you know. I'll pass that weekly benefit onto Caryn. I know I like it!

kareneg - she gives blood on Monday and first treatment on Tuesday.

I'll promise to keep you all informed.

Thanks and Love to all,
Eric
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Old 03-29-2008, 08:40 AM   #20
Barbara H.
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I am currently receiving 4mg weekly. That is all I can handle, and sometimes need to skip treatment. Some patients are receiving 2.4mg. I'm sure that would not have worked for me. I heard that the trial did go up to 2.9 mg., but they had to bring the dose down to 2.4.

Hi Eric,
It will be a long day for Caryn, and she will probably have slight chills and feel tired by the end of the day. Unfortunately, I had to go back to school and conduct Curriculum Night after my first infusion. Didn't get home until 9:00. After that first infusion, this drug is very tolerable. Caryn will barely know that she is on Chemo. I hope that it works for her. Currently, everyone at the Dana Farber is doing well with this drug. Only part I dislike about it is having to go every week.
Best regards,
Barbara H.
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