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More Progression
Hi Folks
No other way to put spin on it - wish I could like NEDenise! I have imagined that I have sarcoidosis, continually have my scans get mixed up with someone else's but alas I think I have to come clean with myself!
So TDM1 didn't work for me and I got compassionate access to Perjeta - we decided to try it with Carboplatin. I had scans today - 4 months down the track - significant progression. 15-20 new spots in lungs, new mediastinal nodes and spreading further up neck but not big enough to cause problems. Existing spots some the same others bigger - overall 30% progression of disease load.
We have a plan - I will keep on Perjeta and Herceptin and swap to weekly Abraxane. There are numerous cytotoxics to try yet but as nothing has really worked for me previously I am reluctant to keep gambling with likely little benefit.
If you meet me in the street you would think I was such a healthy 40 year old apart from the niggly cough. I can still pass people on my morning walks and breathlessness is not a problem. It is difficult to believe we started talking about end of life care today. My son only started school 3 months ago.
I naively have always thought I would get better - that I would be one of the miracle stories despite the odds being stacked against me. I am fast starting to lose that faith. I cannot yet fathom that I am at the end of the road. I do so much to heal my body. I seem so healthy - despite 2 years of chemo, I still menstruate, I have a full head of hair, clear skin and bright eyes.
Can I regain hope?
__________________
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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