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Old 10-02-2011, 04:45 AM   #1
Trish
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Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
Re: Australian Treatments and Access

I did take Herceptin and Tykerb together for a time but I either paid for the Tykerb (very expensive) or the drug company (GlaxoSmithKline) gave me some. Should you be in the position of wanting the two together do get your onc to ask the drug rep for some. A friend of mine (who had worked for the MS society) suggested asking and my onc was a little surprised but she did ask and I got quite a lot free. So worth a try if necessary. Thankfully things seem to be stable for you so fingers crossed not necessary.
Trish
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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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Old 10-06-2011, 11:44 PM   #2
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: Australian Treatments and Access

I was chatting to my oncologist about treatments and PBS. She said sadly that she believes the total blockade approach is the way of the future and that she doesn't believe the government will ever fund that - we are going to have to get loud to be heard. I think this frightens me the most - the lack of access to trying different meds that may help us in various combinations.
I guess for now trials are the go wherever possible but sometimes the parameters to get accepted are too difficult. I looked at the TDM1 trial but we felt the risk of being in the taxol herceptin arm was too big a risk for me so I am now on the Bolero trial and so far having a partial response. I am still ever so hopeful for some time NED.
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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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