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09-08-2011, 11:51 AM
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#1
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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decision time: if you NEVER responded to tyk+herc did you respond to other her2 inhi
Hi all,
news are not good from last scan even with direct treatment now. and now the growth is quite fast. some could be necrotic area hoping
I really need to get on a trial but I am wondering this. If I am one of these sub her2 not responding to treatment what is the point to continue that way.. with 9 tumours now 2.2cm the bigger one (from 1.3 on last scan a month ago).with many 1.5 cm with an increase of 50% to 100% in one month (from one PTACE to the next). [added later: the 9 tumours are in the lungs]
I am shocked, and after owling my pain, i decided that i am so fed up of crying that all i can do is to move forward and stop crying but try to get more info please let me know
__________________
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; 09-08-2011 at 06:12 PM..
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09-08-2011, 12:19 PM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Hi FOB
So sorry to hear this news. I was really hoping that things would be stable.
What are the sites of the 9 tumours?
I wondered if any of the T-DM1 trials were still running here in the UK. I know they are randomised but you may be lucky and get in the right arm.
I understand your concern about being in a sub group but it may just be that your particular tumours are not responsive to your current treatment.
Wondered if now was the time for a second opinion? As you will be aware you are entitled to this free on the NHS. I believe that sometimes a new set of eyes is useful and if you pick a major centre they are likely to have access to the latest trials.
Is there an option for you to go abroad for treatment? I know you have done this before but it's costly.
Thinking of you
Ellie
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09-08-2011, 04:55 PM
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#3
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
I am so sorry to read your news. Have you tried Halaven? Several people in this group have been doing well on it.
Try to check www.clinicaltrials.gov and look up her2 positive breast cancer trials in the search box. There might be trials that are available in your area. I think you have to scroll down to near the bottom of each trial to see trial locations, but it is worth a try. There might be something that you and your oncologist are not aware of at the moment.
Take care. Don't give up !!!!!!! Keep putting one foot in front of the other and keep going no matter what. |
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09-08-2011, 05:04 PM
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#4
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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: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Elaine, FOB is in the UK. I do agree with Ellie, FOB, TDM-1 would be a real opportunity for you. I hope some of our more versed propeller-heads chime in soon. I do suggest reminding everyone of where your tumors are located.
Sending prayers 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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09-08-2011, 06:11 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Lungs
Thank you all for input
__________________
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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09-08-2011, 08:44 PM
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#6
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Some trials listed on www.clinicaltrials.gov have sites in other countries besides the U. S. A.
You can also do a regular internet browser search
for something like this-------"breast cancer clinical trials for her2 breast cancer in the UK". |
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09-08-2011, 09:15 PM
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#7
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
FOB, I had no idea how strong a woman could be until I came to this site. I want to be just like you! You always show such strength! Please know you and your family are in my prayers.
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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09-08-2011, 09:23 PM
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#8
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Sorry to hear your news FOB.I have fairly frequent bad news too but about my liver not lungs. TDM-1 is chemo +herceptin and although I have not responded to Tykerb/Herceptin without chemo I am still hopeful I will respond to TDM-1 as I have to the combo of chemos +targetted before. I see Tykerb and Herceptin as necesssary but not sufficient for tumour control in my case. Please don't lose heart.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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09-09-2011, 03:33 AM
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#9
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Trish
You have raised a really good point. My onc is not yet convinced that herceptin and tykerb on their own without adding a chemo is successful for everyone. He sited a few patients that it kept stable but said for most they need an addition of chemo.
As T-DM1 has a chemo 'bound' to it this felt like a good option especially due to less horrible side effects. One of the problems we all face is eventual resistence to herceptin.Hopefully research will soon bring us ways of overcoming it.
Ellie
Ellie
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09-09-2011, 05:35 AM
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#10
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
FOB
I did not have a great response to Tykerb/Herceptin, it seemed to work for a short time, and the same happened with TDM-1....maybe the TDM-1 with Pertuzamab is something that will be more readily available, until then, I seem to respond best to herceptin and a chemo agent.....Halaven worked well for 7 months, now Gemzar....hope this helps
__________________
"Be kinder than necessary, for everyone you meet is fighting some kind of battle."
Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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09-09-2011, 10:06 PM
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#11
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Ellie
Even if we are resistant it is possible that the herceptin stilll has a role-at least until something better comes along. The frustration is that research has brought us more options like TDM, Pertuzumab and Halaven that aren't available to some of us. I hope you stay stable at least until these things become available to you in the UK.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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09-10-2011, 04:24 AM
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#12
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Hi Trish
Totally agree. As I understand it sometimes adding a chemo to herceptin can 'kick start it'.
Thanks for your good wishes. It's very frustrating here in the UK when I read that some sisters can't access what would really help them!
Ellie
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09-12-2011, 01:28 PM
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#13
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Ellie,
My oncologist feels the same way about the Herceptin/TyKerb. I go for blood work Friday. It will be interesting to see what my TMs are. They went from 71 to 58 after doing the loading dose and Tykerb for three weeks.
Amelia
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09-12-2011, 01:35 PM
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#14
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
thank you all for your best wishes and suggestion, the german prof say maybe that I can still get them lasered and that the important thing was that there were no new tumours..i do not know how much of what he said was out of kindness (waiting on decisions) Anyhow i am thinking go on navelbine at the same time, i have an appointment next week and will discuss.
Waiting , i can now feel my lungs and i am i have the impression that i am a bit short of breath. I rememebr reading somewhere that the lungs were the biggest organ and that we could live with quite a bit shopped up.
having been at home alone for quite a while know due to my digestive prob and pain in the butt it is all getting so hard to cope with this board reminds you that courage is
__________________
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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09-12-2011, 02:05 PM
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#15
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
also can i have navelbine iv? not sure my stomach can take anymore chemo..
__________________
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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09-13-2011, 03:34 AM
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#16
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Hi FOB
Yes you can have navelbine by infusion.My understanding is that it's the preferred route here in the UK.
Ellie
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09-13-2011, 06:29 AM
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#17
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Senior Member
Join Date: Jan 2007
Location: UK
Posts: 617
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
thanks Ellie good to know
__________________
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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09-20-2011, 02:03 PM
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#18
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Guest
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Hi Fullobeans
I am presently on Navelbine (Vinorelbine) for mets in my lungs. Was on Xeloda and Tykerb for 2 and a half months and the mets progressed. Also on oxygen. Very restrictive.
I have had four treatments and probably my oncol will give me two more, then a cat scan. I preferred the other treatment, your life did not change much with the pills. Oh well, can't have everything.
Gail
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09-21-2011, 12:15 AM
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#19
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Hi FOB;
I'm sorry to hear the news. Just like the rest of the sisters on the site, your best hope is to get on a clinical trial. I'm sure they are running at least one for bc that will benefit you.
Please check into it. Keep us posted.
With Love,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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09-22-2011, 01:13 PM
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#20
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: decision time: if you NEVER responded to tyk+herc did you respond to other her2 i
Just an fyi here--been on hercep-tykerb the past 21 months, so far so good. Ceesun
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