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Old 04-22-2012, 04:10 PM   #4
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: open access article chock-full of statistics on treating Stage IVs w herceptin

Thank you - great statistics there. It is disappointing but to be expected of course to see you life and continuing it put into terms of economic benefit. As we see with may of our long term survivors continuing beyond progression often has significant results. Of course this costs money but to me being here for my children is priceless. I have progressed in stage 4 on perception - the thought that I would be denied further treatment if Tykerb and Xeloda fails for me when I am currently asymptomatic fills me with fear! Why do these drugs have to cost so much? (I know but I am exasperated!)

On the upside - there is evidence that continuing beyond profession is useful and that novel combinations can work - of course combining targeted therapies will be very expensive and unlikely to be funded here in Australia (I am table to combine herceptin and tykerb here without self funding) - and we can see that our own Ceesun has had 2 years of good quality of life out of this combination. Oh I dream of the day we can individualise medicine and use what works best for the individual rather than the hit and miss approach currently used.

I also wonder about many of the outcomes in the studies as they are often on women who are much further into the disease - therefore may respond less well? My onc has noted this with the Bolero 3 - her patients respond quite well compared to some of the other groups around the world but she said many of the other groups are using women who are on their 7th and 8th therapies. I wonder how this skews PGS and OS results. But we cannot do it without these women and one day I will be one of them so we will keep charging forward and hope that Pertuzamab is a goer, that TDM1 is a goer and that there are more in the pipeline - maybe afinitab, neratinib etc... The trouble will be access and $$$

Rant over - thanks as always for the articles Lani.
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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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