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Re: Off the Bolero Trial
thank you all so much for your replies. I am in a much better headspace now and hearing from you all has helped me immensely.
Just to clarify - it was my surgeon not my oncologist who was talking like this and I did focus on the negatives - he also had some positive things to say about attitude and treatment advances but... Look I am not going to focus on that now.
My oncologist fortunately never talks prognosis and talks about managing the disease long term. She is very keen for me to get into a TDM1 trial - there is only Marianne and th3resa here - I qualify for neither currently. We didn't do Marianne as first line as I had seemed to progress on Taxol so we didn't want to risk being randomised into the taxol group. I have to try tykerb and xeloda to qualify for Th3resa - I just wish it had a pertuzamab arm. Anyway - we have also discussed Abraxane as our next likely option.
Who knows - maybe Tykerb and xeloda will hold things at bay for a considerable length of time? Dare I dream of NED?
I'm not giving up, I'll face what's ahead of me and for now I feel good and I have three beautiful children to love and care for and create happy memories for. So bring on the Tykerb and xeloda!
Amanda xx
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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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