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Off the Bolero Trial
Well - it looks like I got 7 months out of everolimus. My last scan showed progression in my lungs - new spots and growth of existing spots.
I am due to start Tykerb and Xeloda next week. Had a lung biopsy yesterday as we could finally reach one - they are still relatively small but numerous. My lymph node and skin met remain stable - just my lungs going crazy.
I am feeling pretty bummed. I have made major lifestyle changes, coped really well with treatments, still mothered my children, meditate and try to enjoy life but this cancer just keeps growing.
I saw my surgeon today - a wonderful man but brutally honest with me. He said the speed at which the cancer spread while on treatment was not a good sign and that the likely course is treatments becoming progressively less effective until there is nothing left.
I find this so difficult to comprehend. I am still asymptomatic. I have three young children 5, 7 and 10 who need their mother. I have been struggling to keep the tears at bay today.
No one seems particularly hopeful regarding Tykerb and Xeloda - just a time buyer - well I guess they all are. My oncologist seems to be ticking the box so that I might qualify for the Th3resa trial.
Probably just my headspace tonight - usually I am so inspired by everyone on here and the hope that abounds but I went searching for threads on Xeloda and Tykerb side effects and noticed that some of them were a few years old and many posts from members no longer with us and struggled with that.
I am looking for wise words from those of you with experience. Any tips on Tykerb and Xeloda also very much appreciated.
Amanda x
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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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