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Next plan of attack
My follow up scan showed slow progression again - enoug for me to discontinue the TDM1 trial - it was slowing things down but not stopping anything. As my oncologist said yesterday, my cancer seems to like my lungs.
I have been granted access on a compassionate access scheme to pertuzamab - are going to try carboplatin, herceptin and pertuzamab. Not a common combo at all but I have no exposure to platinum therapy so I had a preference for that over Abraxane at this stage. We will try Abraxane in the carboplatin in ineffective. It will take 2 weeks to get pertuzamab into the country so I will start with just herceptin and carboplatin.
How do I feel? Flat, really flat. Up until now I have had no symptoms but I starting to cough more despite still being able to swim in the ocean (I've even entered an ocean race on Australia Day). It feels a little like a slippery slope. I have tried for the past 20months to get on top of this with both the best medicine around and through my lifestyle and approach to living fully. Here was what is supposed to be the best drug around and I didn't even get 4 months out of it. I am sick of being told how unusual I am. I have a little boy about to start school in a few weeks and it breaks my heart. My girls a still in primary school. My oncologist remains positive and talks of dual blockades and new targeted therapies but I feel like we are clutching at straws. We started talking access to phase 1 and 2 trials in the future should what I try next not be effective.
I've always felt I could cope with this, manage my "chronic illness" for many years. For the first time, real doubt is entering my head. I envisage being there when I have grandchildren and my children's marriages but the picture is no longer so clear.
I know I'll feel better once I start and I am ever so grateful for access to perjeta (I will be one of very few women in the country having it). Just had to whine for a little in a safe place.
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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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