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Mandamoo · 03-31-2012, 02:21 PM

I would like to add to the andrimycin debate - we believe it was completely ineffective for me. (sorry not andramycin specifically but anthracyclines) The cancer in my breast tissue and lymph nodes showed a genetic mutation which is believed to be resistant to anthracyclines - P53. Wouldn't it be great if we could have true sensitivity testing? I did get skin spread while on epirubicin, 5fu and cyclophosphamide - not diagnosed until I started taxotere and herceptin by which time I already had lung spread also. I had skin sparing mastectomy with tissue expanders - skin met was about an inch from my scar but close to where the initial larger tumor was. I had navelbine, herceptin and Everolimus for 7 months and was stable before progression in my lungs. I have now been on tykerb xeloda for 5 weeks and my skin met is all but gone - ct in 2 weeks to check lungs.
Just thought I would add my story - just because we are her 2+ - doesn't mean we all react to medications the same way. I wonder had I done the TCH regime if I would be stage 4 now? We will never know.
Yan yan - there is much hope for you - it sounds like it might be worth getting a second opinion. I haven't had radiation so don't have the issue with blood supply to the mets. I have a friend with a local recurrence in a reconstructed breast and she is having chemo before having the reconstructed breast removed - her lump is very large and she has a history of complications with surgeries.
Good luck.

03-31-2012, 02:21 PM	#14
Mandamoo Senior Member Join Date: Jul 2011 Location: Melbourne, Australia Posts: 432	Re: IBC after initial dx of IDC? I would like to add to the andrimycin debate - we believe it was completely ineffective for me. (sorry not andramycin specifically but anthracyclines) The cancer in my breast tissue and lymph nodes showed a genetic mutation which is believed to be resistant to anthracyclines - P53. Wouldn't it be great if we could have true sensitivity testing? I did get skin spread while on epirubicin, 5fu and cyclophosphamide - not diagnosed until I started taxotere and herceptin by which time I already had lung spread also. I had skin sparing mastectomy with tissue expanders - skin met was about an inch from my scar but close to where the initial larger tumor was. I had navelbine, herceptin and Everolimus for 7 months and was stable before progression in my lungs. I have now been on tykerb xeloda for 5 weeks and my skin met is all but gone - ct in 2 weeks to check lungs. Just thought I would add my story - just because we are her 2+ - doesn't mean we all react to medications the same way. I wonder had I done the TCH regime if I would be stage 4 now? We will never know. Yan yan - there is much hope for you - it sounds like it might be worth getting a second opinion. I haven't had radiation so don't have the issue with blood supply to the mets. I have a friend with a local recurrence in a reconstructed breast and she is having chemo before having the reconstructed breast removed - her lump is very large and she has a history of complications with surgeries. Good luck. __________________ 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. Fec3, Taxotere and herceptin2 - 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.