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Re: ibc triple neg...eeeek newbie
Hi Liv - where in Australia are you? There are not many parp trials running as far as I know but there is one using tamoxifen in TNBC - not sure if it is for inflammatory though.
Have you been on the BCNA website and linked with the TNBC girls there?
We also have a very active FB group for young women - mostly Australian girls.
Feel free to PM me.
Second opinion is good. The trouble in Australia with demanding more chemo is the government PBS will not fund you if you have already had the prescribed course. I know you are fearful - perhaps you can focus on the other things that you can do in your life to help manage the disease and hopefully help prevent recurrence - lifestyle, exercise, living fully.
Would love to help with some local resources if I can.
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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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