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Denied compassionate use of TDM1
I found out Monday that I have been denied compassionate access to TDM1 - my reasons for not doing Teresa were not compelling enough (based around family commitments and traveling distance)
I'm ok - half expected the news so for now I have come with my family across the world to Venice to celebrate my 40th birthday with a month in Italy. I will apply for the Teresa trial on my return home and pray that I am randomized to TDM1. If I am in control group we are not sure what treatment yet - maybe Abraxane and herceptin or maybe continuing with Tykerb and Herceptin which is what I am now doing to keep things under control while I am on holidays. I had a dose of herceptin on Friday and will continue to take tykerb - currently no chemo agent in the mix - but this trip was important to us so we brought it forward a month.
I have been told it could take 2 weeks to randomize me on my return so I'm all booked to start the process within 2 days of getting home. All 5 subjects so far at the research centre are getting TDM1. Roche did say I can reapply in the future.
I had a wonderful party with my dearest friends for my 40th - a 70's theme - i have changed my profile to a pic of hubby and I - ready to tear up the dance floor! (can't change it from my iPad - we looked fantastic! You will have to take my word for it!)
So today, as the family are sleeping off the jet lag - we will explore Venezia!
Amanda
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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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