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Old 07-14-2017, 09:54 AM   #1
michka
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Location: Paris, France
Posts: 858
ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

Hello to all.
I am still on Halaven+Herceptin and it is still working for my lung and liver mets. However, my brain mets are stable and I wanted to enter the ONT-380/Tucatinib trial that also targets HER2 brain mets.
On the clinicaltrials.gov site there are more than 60 locations listed but only in the US and Canada. One just opened in UK.
I tried to reach the lab called Cascadian Therapeutics in Seattle to know if they were hoping to open new sites in France or in Europe. I sent a mail on an address that seems more for business development than for patients or doctors and left a message on their answering machine but got no answer.

Is someone on this trial or hoping to enter this trial?
Does anyone know this lab or know how I can contact them?
Thank you for your help!
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 07-14-2017, 11:55 AM   #2
michka
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Location: Paris, France
Posts: 858
Re: ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

I just got an answer from the lab. 2 sites may open soon in Paris!
Now, I have to contact them.
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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Old 07-14-2017, 10:51 PM   #3
StephN
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Wink Re: ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

Wonderful news! You are such a great researcher for your own good! Let us know how it goes and when they plan to open those sites. Sometimes it takes a while.
__________________
"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 half of 2017. Boring ...
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Old 07-15-2017, 08:21 AM   #4
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 1,801
Re: ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

Oh Michka! That is terrific news! Way to battle the beast, Girlfriend. I am so glad the Halaven/Herceptin combo is working for you! That is wonderful news alone and to think you may be able to get into a trial for the brain mets! In Paris no less! Thank you for posting! Love and admire your pluck!
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
9 Years NED
I think I just might hang around awhile....

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Old 07-25-2017, 06:10 PM   #5
caya
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Re: ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

Great news, Michka! Have you been in touch with the Paris contact that is doing the trial yet?

Bonne chance.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
11 Years NED!!
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Old 07-26-2017, 05:19 AM   #6
sarah
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Location: france
Posts: 1,625
Re: ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

Hi Michka,
Let us know about Paris. My husband and I have friends who just moved from here to Seattle and I can ask them to look into things. Also if any trials in SF or LA, I may be able to find something out. you know how to reach me if I can help in any way.
Hugs and love
Sarah
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Old 08-02-2017, 06:45 AM   #7
Catherine
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Posts: 662
Re: ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

Dear Michka, wonderful to hear that the clinic you researched is coming to you in Paris. Sending you love and support as you wait for them to open their doors! You are a strong, wise woman! ❤️
__________________
Catherine


Found my own lump in the shower
April 06 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 3.2cm
Chemo first: AC/Taxol over 16 weeks
Bilateral Mast Sep 06, 3 of 14 lymph nodes pos, 33 rads
1 year of Herceptin completed Dec 07
10 years NED as of April 2016

Last edited by Catherine; 08-02-2017 at 06:45 AM.. Reason: Typo
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Old 09-28-2017, 10:58 PM   #8
StephN
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Location: Misty woods of WA State
Posts: 4,033
Wink Re: ONT-380/Tucatinib trial? Anybody has contact with Cascadian Therapeutics?

Dear Michka,

Any news to share on the trial you are working toward? Sending my best healing thoughts your way!

No trip to France in my immediate future, but I think of you often and remember our time together.
__________________
"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 half of 2017. Boring ...
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