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Old 04-23-2013, 03:39 AM   #4
Mandamoo
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Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
Re: More Progression

Thank you.
I have had my lung biopsied and have no hormonal involvement. The thinking is I am not likely to benefit from metformin - I think it is due to my body type etc... But I will ask the question again.

My biopsies have confirmed that I am still her2 positive and have her3 expression as well, I also have a p53 mutation. My most prolonged response has been when a pi3k inhibitor has been included in the mix - affinitor. I do not have a p13k mutation.

I have only ever had two treatments with a taxane so perhaps this will help.

I see a traditional Chinese medicine dr and have included many integrated elements in my healing. In Australia integrative Drs are difficult to come by - they exist but are considered alternative rather than truly integrative unfortunately and they do not work together with oncologists and vice versa. I haven't tried hyperthermia - I have looked into some German clinics but they are a very long way away from home and my children as a long shot.

My oncologist is wonderful and I have asked her to look into some more options including neflinavir and kevetrin (phase 1 trial of p53 drug) - she has told me never to apologise for having hope and that she has not given up and that I am amazing and she will keep working to keep it that way...

Right now, I feel good apart from a niggly dry cough, I kicked the football for 45 mins with my son this afternoon, I do most things I always have - while I am breathing there is hope.
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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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