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11-19-2012, 07:09 PM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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arbiraterone for ER negative?
Clever beans opinions welcome. one of my option is Arbiraterone a testosterone inhibitor as a phase 1
The only small result available obviously since it is a phase 1 is the following poster.. the poster says they tested ER-neg clients but the results says that the 2 positive response are from ER+ one.. (I am ER negative)
Does not sound great (nor does the title fit the abstract) .. Or the question Am I missing something???
http://www.asco.org/ASCOv2/Meetings/...ew&confID=102&
abstractID=79667
Friday I am having another stent put in this time for the tumours growing in my airway, when I lie down it sounds like I am snoring and I am very short of breath now and degrading fast.. I know it is not reasonable to expect much from a phase 1 but can't stop being human.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
Last edited by fullofbeans; 11-19-2012 at 07:16 PM..
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11-19-2012, 07:47 PM
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#2
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: arbiraterone for ER negative?
i dont know much about fec, litt, tace, but what does your doc say about the use of gemzar, or navelbine ? both worked for agood while for Lorraine, esp herc/gemzar , 18 months . she didnt get far w/ tyk/xel. tried em twice. she had to go on harsh adria to get into t dm-1. would something harsh like adria, or a taxane again help get lung mets under control ? carbo combos ? just trying to help. praying for good decisions, quick response . God Bless.
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11-19-2012, 08:24 PM
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#3
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Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
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Re: arbiraterone for ER negative?
This looks like a study for ER positive or AR POSITIVE cancer that is no longer responding to endocrine therapy not ER neg. what about pertuzamab ? I'm sorry it's hard right now.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
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11-19-2012, 10:02 PM
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#4
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: arbiraterone for ER negative?
Has your tumor tested + for testosterone receptor?
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11-20-2012, 02:56 AM
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#5
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: arbiraterone for ER negative?
Hi FOB
Sorry I have no info about the trial but just wanted to support what Phil has said. One of the problems we have here as you know is what drugs we can access. Gemara and navelbine are available with herceptin and I wondered if there was a reason why you didn't want to try one of them? It upsets me to read about your struggle and the new stent and I wondered if some chemo may help with shrinking this tumour?
As I said before if you venture for a second opinion to my part of the world I would be happy to offer you somewhere to stay.
Ellie
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11-20-2012, 11:42 AM
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#6
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: arbiraterone for ER negative?
Will be thinking good thoughts for you on Friday while you get a procedure to help you breathe more comfortably.
Hope you can start a new treatment very soon after that.
__________________
"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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11-20-2012, 11:46 AM
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#7
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: arbiraterone for ER negative?
Yes Lani I have tested positive for AR and TP53 and no mutation for PIK3CA, PTEN,BRAF,PTEN
I know I could try another chemo such as eribulin or vinorelbine that I have not had but Ellie/Phil the reason is that I do not beleive it will work for long and not sure I want anymore chemo..maybe I am wrong to think that, sometimes I wonder but the thing is sometimes (and I am so sorry to think that way) but I think I rather not be there that live like that..sorry but I am on my own with my dog.
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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11-20-2012, 02:08 PM
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#8
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Senior Member
Join Date: Nov 2010
Posts: 393
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Re: arbiraterone for ER negative?
I completely understand , it is your right to decide. Lorraine wanted to quit when on adria again, . But she knew it was a short term goal of getting cancer under control . see chrisys new post about stopping perjeta.
we have a friend who got a kick out of t dm-1 for about 9 months , then progressed 4 months ago approx. he went on herc/navelbine, was sick at first , then they lowered dose and he looks , feels good. riding that horse until something better comes along.
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11-20-2012, 06:28 PM
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#9
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: arbiraterone for ER negative?
Yes I am strting to give navelbine /herc some thought..
__________________
35 y/o
June 06: BC stage I
Grade 3; ER/PR neg
Her-2+++; lumpectomies
Aug 06: Stage IV
liver mets: 6 tumours
July 06 to Jan 07: 2*FEC+6*Taxotere; 3*TACE; LITT
March 07- Sept 07: Vaccination trial (phase 2, peptide based) at the UW (Seattle).
Herceptin since 2006
NED til Oct 09
Recurrence Oct 2009: to internal mammary gland since October 2009 missed on Oct and March 2010 scan.. palpable nodes in May 2010 when I realised..
Nov 2011:7 mets to lungs progressing fast failed hercp/tykerb/xeloda combo..
superior vena cava blocked: stent but face remains puffy
April 2012: Teresa Trial, randomised to TDM1
Nov 2012 progressing on TDM1
Dec 2012 blockage of my airways by tumours, obliteration of these blocking tumours breathing better but hoping for more- at mo too many tumours to count in the lungs and nodes.
Dec 2012 Starting new trial S-222611 phase 1b dual egfr her2+ inhibitor.
'Under no circumstances should you lose hope..' Dalai Lama
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11-21-2012, 02:18 AM
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#10
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: arbiraterone for ER negative?
So sorry T-DM1 1did not work for you. Did you have any response at all? Just as an FYI, dr Slamon recommended navel give/herceptin for me if I was ubable to get in T-DM1 trial. I saw an 8 yr Stage IV patient on TV say UCLA put her on the testosterone inhibitor. Her name is Noreen Fraser. Sha has a foundation and a blog so you moght want to ask her via e-mail how it is working. Hope you find the magic combo soon.
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11-21-2012, 03:10 AM
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#11
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: arbiraterone for ER negative?
Hi FOB
I totally understand how you feel about more chemo. It saddens me that we don't have more effective treatment to control this cancer. Guess I just wanted to try to encourage you to hang on.I remember Courtney had Gemzar I think twice and reported very few side effects and a good quality of life.
Ellie
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11-21-2012, 05:17 PM
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#12
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: arbiraterone for ER negative?
FOB, I know chemo is a hard-go, but I hope you give another protocol a try if for no other reason than we want you to stick around. Selfish, I know. I will pray from across the pond.
__________________
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
15 Years NED
I think I just might hang around awhile....
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11-21-2012, 06:26 PM
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#13
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Re: arbiraterone for ER negative?
Full of Beans,
Oh, I didn't realize what you are going through. Chemo sucks, but I hope you find a combination that gets these mets shrinking fast!
I don't have a clear answer. Is AR positive Androgen receptor positive?
Does this trial sound like it would be helpful for P53?
http://clinicaltrials.gov/ct2/show/NCT01042535
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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