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07-23-2009, 03:41 AM
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#1
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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T-DMI information
Hi
I have read a number of posts about members on trials of T-DMI. This is not currently available in England and my onc does not seem to have much information about it though I noticed they are opening more trials in America.
I would be really grateful for any information such as how often it's given, what the side effects are and do you loose your hair!
Many thanks
Ellie
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07-23-2009, 06:03 AM
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#2
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Senior Member
Join Date: Nov 2004
Posts: 190
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Hi Ellie
I have been on TDM1 since Dec. The trial that I am on doses every 3 weeks. I believe Barbara's trial is a weekly dose. Some of the side effects are elevated liver enzymes, fever/flu symptoms, back aches but no hair loss.
Based on the results so far there is about a 40% response rate. For the ladies on this list it has been feast or famine for the most part. Either the response was excellent or none at all.
__________________
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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07-23-2009, 08:13 AM
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#3
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Senior Member
Join Date: Sep 2006
Posts: 57
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Hi Everyone,
Does anyone know if the trials accepting new patients? Kim, I am in the DC area also and would love more info. about your trial experience. Thank you so much.
Missy
__________________
Missy W.
Diagnosed 1/06; Her-2, er/pr+
lumpectomy
4 Rounds A/C
tiny area of interest in liver - watching
12 rounds of Taxol w/ Herceptin
tiny area cleared - Stage IV (because area responded to chemo)
Herceptin weekly
27 rounds radiation
NED 8/06
10/06 oopherectomy
Arimidex
1/07-7/07 Vaccine Trial - UW Seattle
3/09 liver met back
3/09 Navelbine, Herceptin Aromasin
6/09 Liver Resection
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07-23-2009, 08:24 AM
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#4
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Senior Member
Join Date: Sep 2005
Location: Newton, MA
Posts: 951
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TDM1 trials
There is a new TDM1 trial opening up in the next few weeks. One site is the Dana Farber in Boston. Perhaps you could call Dana Farber or Genentech to see where the other trials will be held.
Best wishes,
Barbara H.
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07-23-2009, 11:50 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Ellie,
Back to your original questions, Kim was correct
In the Phase I/II trials, there were 2 dosing schedules. Either weekly or every 3 weeks. In either protocol adjustments were needed (skip a week on the weekly trial, or go to every 4 weeks instead of 3) for some people due to side effects (low platelets or high liver function tests, etc.). I have not seen any efficacy comparisons on if one was "better" than the other - too soon for that.
The most common problematic side effects include low platelets (which recover quickly for most people) and elevated liver enzymes. I also have a mild "flu like" reaction (fever, headache) and mild neuropathy. Overall it's much more easily tolerated than chemo, but tougher than plain Herceptin. You do not lose your hair on this therapy.
Efficacy has been good statistically - in the trial results that have been reported, many of the people had been "heavily pretreated" meaning multiple chemos, herceptin and tykerb. So 40% response rate in this population is really good.
__________________
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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07-23-2009, 12:43 PM
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#7
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Hi Chrisy,
I am so glad that you are having good results (and everyone else also) on the T-DM1...I have been following the information and I am so pleased to hear that 40% are having response - that is promising indeed.
I have a question. Do you have any idea how many trials...before it is released as standard treatment?
Wondering since it is going so well how fast will it be
tracked.
Best Wishes,
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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07-23-2009, 06:31 PM
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#8
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Senior Member
Join Date: Nov 2007
Posts: 210
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kim/ congrats on your doing so well on tdm1..
jean, roche/genentech has made public that they expect to file for approval for tdm1 in q1 / 2010 with an expected approval around q3-4 / 2010.
based upon results of the phase 2 tdm1 for patients who have progressed on tykerb. that study is considered as a 3rd line treatment, but once approved, docs will be lining up to prescribe it for those who need it, or whose insurance will cover.
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07-23-2009, 07:30 PM
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#9
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Ellie,
I am also interested in TDM1 and hoping for a trial to open for me soon. I just stopped treatment today and will need to make a move in the next couple of weeks due to progression. I noticed that they have trials listed in both Italy and France.
I hope you get the information that you need and that TDM1 comes near to you soon.
Carolyn
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07-24-2009, 03:22 PM
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#10
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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__________________
A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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07-25-2009, 08:22 AM
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#11
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Thanks Joe, probably not eligible for this one but will keep looking. Still find it hard that we are so conservative in England about trials. There was an earlier one that was advertised as being available in England but when I rang they told me that the oncologists had changed their mind!
So I have not yet given up on a visit to your side of the pond!
Cheers and thanks again for thinking of me
Ellie
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