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Re: Progression. :(
I am so sorry to hear this though pleased it is not a major progression. I can understand your reticence.
It is a pity that we cant access dual treatment like Hercptin and Tykerb here - is there any chance your onc would consider approaching Glaxo re: access to Tykerb? There are ways in and around the system and I believe at some point you would be able to get TDM1 if you wanted it but currently you would have to be heavily pretreated to get compassionate access (and you are not).
I would seriously consider the trial - is it 3 weekly? It could be just the thing for you - Herceptin obviously holds things pretty well for you so adding the chemo to it would probably be a great option for you.
What is the trial and how does it work? Is there a control arm? TDM1 is very doable - I wish it had worked for me and am still bummed it didn't... I know if I were you I would be jumping on the opportunity to get TDM1.
Good luck with deciding.
Ax
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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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